tag:blogger.com,1999:blog-1789993930487225152024-03-06T20:01:47.182+00:00Past the Point of No ReturnA place for me to record the highs and lows of life on the transplant list, and my new life beyond it.Torhttp://www.blogger.com/profile/16037224044391745374noreply@blogger.comBlogger255125tag:blogger.com,1999:blog-178999393048722515.post-3204092282769825752020-04-26T18:47:00.001+01:002020-04-26T19:10:16.858+01:00Birthday! <div><br></div><div>So a lot of people, many of whom are very kind strangers, have been asking about my birthday this year. My birthday is May 5th and I’m going to be honest it won’t be the best of birthdays by the look of it. We are still in lockdown so no family visits, my body decided to grow cancer in multiple spots leading to a diagnosis of incurable cancer. I may be starting treatment or having a procedure that day,who can say at this point. And in the back of my mind it could be my last birthday.</div><div><br></div><div>There are no presents I really need or want and my family and close friends will have those covered. In honesty I have way too much stuff and aiming to clear a lot of it so I can enjoy more space and a less cluttered environment which I’m going to be in a lot. So while you don’t get a bigger fan of cards and parcels through the door than me, it does seem a bit silly this year. </div><div><br></div><div>I would love to be going out and making memories but who knows when that will be possible again but otherwise I’m good with what I have.</div><div>Unless I get sucked into online shopping and then have to literally squish things into drawers and cupboards.</div><div><br></div><div>Since I had so many asking, I thought that it was bizarre that I don’t need anything but in these crazy times so many do. The NHS is crying out for help and everyday charities are missing out on the events they usually run and The funds they usually get yearly. This has huge knock on effects, for example a huge chunk of cancer research work has been stopped. That will have knock on effects for thousands over the next few years. We are storing up a tonne of extra medical things to be dealt with further down the line, cases put off until this crisis is over. There is no way that Covid victims aren’t going to have any lasting issues from their illness that will need further respiratory or physio treatment.</div><div><br></div><div>So I have set up a fundraiser for my birthday. I picked 4 charities close to my heart and if (IF) you would like to donate the cost of a card for my birthday it will genuinely be the best gift you could get me.</div><div><br></div><div>Now, please don’t feel obliged in any way to donate. I mean it. A message somewhere is. Ore than enough. I know everyone is asking for something everywhere at the moment and you can’t possibly support every one. It is completely up to anyone individually if you want to donate, you’ve bought a gift, you sent a card, you wanted to do nothing at all; no one is judging you! I want to make that very clear and no one to feel pressured.</div><div><br></div><div>That said I have set up a page and if you would like to look, here it is. <a href="https://uk.virginmoneygiving.com/fundraiser-portal/fundraiserPage?pageId=1166179">https://uk.virginmoneygiving.com/fundraiser-portal/fundraiserPage?pageId=1166179</a></div><div><br></div><div>Each charity will get a percentage amount</div><div><br></div><div>The Royal Marsden: obvious why but they run a patient fund which does a lot of leading cancer research and pays for equipment. The hospital are currently dealing with other cancer centres I. London to ensure least interruption to treatment. They will also have a flood of patients and new cases after Covid ends.</div><div><br></div><div>Harefield Hospital: They will always be uppermost in my heart, a small hospital who do amazing things and perform miracles behind its walls. Currently dealing with normal transplant issues, they also have Covid wards and have split their ICU into Covid and non Covid. They are a centre with vast respiratory knowledge and my own consultants are using their skills to help fight Covid. I could cry at their bravery. Despite all this extra work, they are determined that their transplant patients aren’t left to their own devices and treated as they would usually be.</div><div><br></div><div>Post pals: A small charity that I’ve been involved with for years. Check out their work. Fundraising is less so they will struggle to take disabled kids and their families away on excursions and provide the brilliant level of happy post and support that they strive to.</div><div><br></div><div>Saint Francis Hospice: the hospice looking after me. They offer great local support and helped me through my first terminal diagnosis pre Transplant. Hospice’s do incredible work taking the heat off the NHS and supporting their patients to keep them out of hospital. Again, they are self funded and will suffer a lot with reduced funds this year.</div><div><br></div><div>So that’s all the info and if you would like to/ can support please do otherwise please don’t worry you have enough going on to deal with right now! </div><div><a href="https://uk.virginmoneygiving.com/fundraiser-portal/fundraiserPage?pageId=1166179">https://uk.virginmoneygiving.com/fundraiser-portal/fundraiserPage?pageId=1166179</a></div><div><br></div><div>Love to all, stay safe! </div>Torhttp://www.blogger.com/profile/16037224044391745374noreply@blogger.com5tag:blogger.com,1999:blog-178999393048722515.post-1496677051369748552020-04-26T17:52:00.001+01:002020-04-26T17:53:12.806+01:00 Cancer is kicking my arse <div><br></div><div>I’m going to be honest, at the moment Cancer is kicking my arse. I’m stuck between a rock and a hard place. I need to try and stay mobile, to eat and to sleep but I’m carrying who knows how many extra kilos in fluid. The same tumour and fluid is crushing my lungs and it’s a weird throw back to breathlessness, gasping and anxiety attacks of pre transplant days. But with good lungs.</div><div>Eating is difficult drinking bloody impossible as extras just add to the extra weight/heaviness on my chest.</div><div><br></div><div>A lot of people say ‘get the fluid drained like I did before’. 1) this wasn’t a nice experience 2) it lasted around 24/48 hours and was back again 3) it’s entering and moving round a hospital with known Covid cases 4) the only way the fluid will come off and maybe stay off a bit more is with chemo added in. So in light of that I don’t want to get drained more than I absolutely have to and am not able to have a semi permanent one which is a bugger.</div><div><br></div><div>That means I’m at home struggling a lot day to day. Pain has been horrendous as I believe fluid and tumour are pressing on nerves so making them hurt like hell. Thankfully the hospice were great at controlling this for me and it’s still there but vastly improved. Breathing is helped a little by pain relief and trying to stay active but can’t tell you how upsetting this is. I fought the lung battle and to feel this monster ruining my hard work is soul destroying.</div><div><br></div><div>I’m not particularly impressed with Marsdens reaction. I’ve heard nothing since they gave me information of my treatment plan (alone and in hospital) over a week ago. I know they are extraordinarily busy but the check in or indeed some dates of when things will happen would have been a big comfort.</div><div><br></div><div>I’m back to needing help dressing, bathing, etc. I look like someone else so avoid mirrors majority of the time. I was actually mistaken as being pregnant the other week. If only! </div><div><br></div><div>I’m not giving up, but unfortunately I have to wait until certain factors come together for me to fight. It will get harder before it eases which is a great thought but it’s not just doing the right thing but doing it at the right time.</div><div><br></div><div>I regularly crumble into a mass of sobbing blubber then realise I can’t cry and breathe so have to have a mini break before I start again. I never give myself credit but I am amazed by how I’m managing to get through each day at present.</div><div><br></div><div>So yes, cancer has got me completely on my arse right now. But it won’t be for long.</div>Torhttp://www.blogger.com/profile/16037224044391745374noreply@blogger.com3tag:blogger.com,1999:blog-178999393048722515.post-82922241111739700812020-04-26T17:43:00.001+01:002020-04-26T17:43:13.958+01:00 <div><br></div><div>I’m going to be honest, at the moment Cancer is kicking my arse. I’m stuck between a rock and a hard place. I need to try and stay mobile, to eat and to sleep but I’m carrying who knows how many extra kilos in fluid. The same tumour and fluid is crushing my lungs and it’s a weird throw back to breathlessness, gasping and anxiety attacks of pre transplant days. But with good lungs.</div><div>Eating is difficult drinking bloody impossible as extras just add to the extra weight/heaviness on my chest.</div><div><br></div><div>A lot of people say ‘get the fluid drained like I did before’. 1) this wasn’t a nice experience 2) it lasted around 24/48 hours and was back again 3) it’s entering and moving round a hospital with known Covid cases 4) the only way the fluid will come off and maybe stay off a bit more is with chemo added in. So in light of that I don’t want to get drained more than I absolutely have to and am not able to have a semi permanent one which is a bugger.</div><div><br></div><div>That means I’m at home struggling a lot day to day. Pain has been horrendous as I believe fluid and tumour are pressing on nerves so making them hurt like hell. Thankfully the hospice were great at controlling this for me and it’s still there but vastly improved. Breathing is helped a little by pain relief and trying to stay active but can’t tell you how upsetting this is. I fought the lung battle and to feel this monster ruining my hard work is soul destroying.</div><div><br></div><div>I’m not particularly impressed with Marsdens reaction. I’ve heard nothing since they gave me information of my treatment plan (alone and in hospital) over a week ago. I know they are extraordinarily busy but the check in or indeed some dates of when things will happen would have been a big comfort.</div><div><br></div><div>I’m back to needing help dressing, bathing, etc. I look like someone else so avoid mirrors majority of the time. I was actually mistaken as being pregnant the other week. If only! </div><div><br></div><div>I’m not giving up, but unfortunately I have to wait until certain factors come together for me to fight. It will get harder before it eases which is a great thought but it’s not just doing the right thing but doing it at the right time.</div><div><br></div><div>I regularly crumble into a mass of sobbing blubber then realise I can’t cry and breathe so have to have a mini break before I start again. I never give myself credit but I am amazed by how I’m managing to get through each day at present.</div><div><br></div><div>So yes, cancer has got me completely on my arse right now. But it won’t be for long.</div>Torhttp://www.blogger.com/profile/16037224044391745374noreply@blogger.com5tag:blogger.com,1999:blog-178999393048722515.post-23156419406499059102020-04-20T20:19:00.001+01:002020-04-20T20:21:45.762+01:00 No wordsOk so it’s the blog I’ve not wanted to write. It’s not even that so much as it feels like I’ve been overloaded and it’s difficult to explain. I think I’ll be sticking to physical/ practical stuff here and follow up with a more emotional/thoughts post but let’s stop putting it off and explain.<div><br></div><div>Last time I blogged I was heading to Harefield again. I was seen in clinic, found a bed and sent to the ward on Tuesday. There were lots of ideas thrown around initially. My lung function had taken a big drop. I was X-rayed and told I’d be having a bronch the next day (a camera into lungs which can be used for various procedures). A CT scan was mentioned as was draining fluid, palliative teams and water tablets.</div><div><br></div><div>Although I was nil by mouth overnight my bronch was cancelled after my big boss dr looked at my X-ray. The fluid (ascities) on my tummy had gone up into my lungs and was lying between the lung and the lung wall. This makes it difficult to breathe and was causing my issues. I would have that drained in the afternoon instead. I was petrified. They would then test that fluid and CT scan the following day. Although I’d started on water tablets my consultant was dead against me continuing. With my other issues sooner or later it would cause kidney issues or high levels of potassium. I was being tested for this a lot and it wouldn’t be something realistically I could go home on and not have those constant checks. So that idea was scrapped.</div><div><br></div><div>I went down to get the fluid or pleural effusion drained off. It meant me facing a wall sitting up while my back was scanned. I hated having no one to hold me hand or include me in the conversation. I heard the word malignant and was stuck cold. I say shaking while having the procedure where local anaesthetic is injected then a needle or tube is inserted and fluid is drained with a syringe. I wasn’t painful but I just hated feeling so alone and vulnerable. I ended up imagining people I loved and what they would say to me which helped.</div><div><br></div><div>There was no pain after and breathing was a little easier. Sadly by the next days CT scan the fluid was pretty much returned and in my lower lungs too. On the Thursday I was told the Marsden wanted to phone me to discuss results. I was in a state, made myself really nauseous and headachy to find they didn’t ring. Or the next morning as promised. I can’t tell you how hard it is to wait for that kind of news, alone, without family, knowing whatever the outcome you have to tell them and with nothing to distract you. Finally the top consultant phoned me. She was the dr who treated me before and it was nice to know her and be certain of her knowledge. She spent so much time telling me what treatments were possibilities and what weren’t and why. For example immunotherapy is no good because you need less that 4 protein markers in the blood and I have all 4 which rules me out completely. Same with the drug herceptin, you are either positive or negative for that drug, I’m negative.</div><div>As bad as it is, it does help to know that and the why behind it because it immediately takes those off the table there’s no question on them anymore and you can focus on what is available.</div><div><br></div><div>What is available is limited. I also have incurable cancer, that means they will try to shrink, stabilise and control the tumours but they aren’t aiming to “cure” them. Now I took this 20 minute phonecall by myself and was stressed so this is the info as I understand it. The cancer is a relapse of my gastric cancer so wherever it is in my body the cells are gastric. I was high risk for it to come back and it’s not unusual for it to travel down to the ovary as it has here. Chemo is my only option right now, the first option we can try is the original chemo I was on previously. It’s moderately effective and we know it’s not caused the myriad of problems it could with anti rejection, liver issues etc. Which counts for a lot. </div><div>There are also two other drugs that are unknowns with me. Both cause hair loss and platelets problems which are already problematic for me. The other option was do nothing, which is as valid option as any. </div><div><br></div><div>My choice right now is to start the previous chemo. We will drain my tummy when chemo starts and the amount that comes back will be an indicate if treatment is working. After so many cycles I’ll be scanned again to see the effect and go from there. We can change drugs if needed.</div><div>As I understand, treatment with one set of chemo could work for years, or I could run through them all in a few months and then there’s no options left. There is no way of knowing till we do it.</div><div><br></div><div>For now I came home Friday Eve. It’s very difficult as the fluid in my lungs and stomach are extremely uncomfortable. It’s hard to breathe, move, I’m in a fair amount of pain but pain meds are changed so hoping they even it out. It reminds me of pre Transplant. Everything takes effort and I’m sleepy, finding it hard to concentrate.</div><div><br></div><div>Unfortunately Covid is another factor. Chemo will make me so extremely vulnerable that if I contract it I will die. My consultant has had experience of the virus in her patients and against both our instincts we are holding off starting treatment for 3 weeks.</div><div><br></div><div>They’ll be a lot to organise with the need for a picc line, fluid drain and certain medications to give me the best chance with chemo. </div><div>I’m also on the local hospices books in case they can offer me any support during treatment.</div><div><br></div><div>Glad that’s written and out there! </div><div><br></div><div>I appreciate all the love you’re sending. Apologies if I don’t reply, I’m just so worn out but doesn’t mean I don’t read every one xxxxx</div>Torhttp://www.blogger.com/profile/16037224044391745374noreply@blogger.com6tag:blogger.com,1999:blog-178999393048722515.post-78852669799632046072020-04-12T22:25:00.001+01:002020-04-13T17:51:04.181+01:00 Shattered I think most of you already know the basics of what’s been going on here but I wanted to write something. I will be skipping over bits as the last 3 weeks have been utter madness.<div><br></div><div>In my last posts I was telling you how my stomach was hugely distended, how bad I was feeling and the treatment I was trying for a bowel blockage. After a week of intense laxatives and the toll of that on my body I was admitted to Harefield. The intense regime continued but wasn’t working. The incredible doctor looking after me was concerned and had basically consulted with my gastro doctor to potentially operate on me as I was beginning to decline. Remember I’m alone and no visitors allowed, having to pass on bad news all the time. I was on nill by mouth and had an emergency CT scan to get more information about where the blockage was etc.</div><div><br></div><div>My doctor came in to talk to me and asked if I’d like my parents to come up.... I knew then. I asked her to tell me whatever she had to before they arrived. She said that unfortunately it wasn’t a bowel blockage but a large mass coming from my left ovary sitting in the area. It’s pushing on various things causing it to be difficult to go to the loo. She continued to say there was also visible changes to my breast tissue and suspicious mets on my bones. My world fell apart right there. I was very calm and everyone so lovely. I asked for some space and knew I had to make the worst call ever, I had to ring and explain to my parents and then my sister. Both broke me. Parents drove up to bring me home and were told the same info etc. </div><div><br></div><div>I’m now back under the Royal Marsden, they are reviewing the CT scan but have said my cancer is incurable. I cried and screamed like a wild animal, every time I’ve overcome but I fear this won’t be possible now. We collectively cried a lot. </div><div><br></div><div>My symptoms of being so fat were down partly to the huge mass but also fluid surrounding it so on Monday I had to go and have a drain put it (no sedation) watch it drain for several hours then have it removed (It was really awful and has upset me a lot). We drained off 3.5litres of excess fluid, I lost around 5kg and they took blood and fluid samples to send to the labs. </div><div><br></div><div>One of the doctors who saw me through chemo before phoned to check on me and told me the results of everything should be back end of next week. We should have a lot more info and ways to move forward by then.</div><div><br></div><div>Physically I’m not doing well. My lung function has dropped a huge amount, I feel sick to look at the numbers. This needs to be checked. I’m extremely exhausted all the time and needing naps, I’m so miserable and frightened. My back pain has exploded and it’s agony to move. I’m still taking laxatives to help prevent a blockage. Just one week on from fluid drain I’ve gained another 3.3kg and am massively uncomfortable. I’ve got acne spots that continue all over my scalp, itching and making it sore. I’m on my 3rd period of the month. I’m not good physically or mentally coping but I know it’s under incredibly difficult circumstances but it makes it so much harder to have the extra Covid fear and not having anyone with you for support.</div><div><br></div><div>I have had some truly amazing messages, cards, videos and gifts. I’m sorry if I haven’t replied I’m just more exhausted than possible. </div><div><br></div><div>I’m hoping I will have a plan soon and when I do I’ll let you know.</div><div><br></div><div>Just as aside note, we are in lockdown over Easter weekend. Don’t moan, look at the people you live with and love, hug them, voice call, enjoy their faces and tell them you love them. One day you won’t be able to and god you’ll wish you did it more. If you can go outside (safely) appreciate the breeze, the lung fulls of air, the smell of flowers, grass and wood, notice the sun on your face or the time you’re spending. Appreciate it. The thought of losing it soon makes me sob. Make those kids feel special, do something for others. Appreciate life.</div><div><br></div><div>Thank you for your love much sent back.</div>Torhttp://www.blogger.com/profile/16037224044391745374noreply@blogger.com4tag:blogger.com,1999:blog-178999393048722515.post-14117679436895849902020-03-20T18:53:00.001+00:002020-03-20T18:53:58.974+00:00#30daysofblogging Day 12; The Good Guys.Following on from yesterday’s post where I had a rant about those who aren’t helping the situation we find ourselves in right now, I wanted to show the other side of the coin.<div><br></div><div>In times of crisis, people often show their true colours. Companies can do right by their customers and staff, become an example or they can show themselves as unfair employees, perpetuate the problem simply by remaining open or not being a good example (pubs, clubs and restaurants I’m looking at you) or they can do what is right in spite of what that may mean to their profits, especially if they are a small business. They may think of new ways to provide services, be creative, provide a service that will help others or be generous in some other way. I am very driven by this when I buy items. When this is all over I will be supporting those who supported others, shopping more with small business that will need an extra boost and generally promoting, helping anyone I can that showed their true colours are good ones. </div><div><br></div><div>Now I’ve seen a lot of good being done but I’m just going to mention here ones I know about and have seen myself. If there are others you think we need to celebrate please let me know! I’m keen for us all to help each other by promoting and supporting them here, on twitter, Instagram and anywhere else so let’s all share the love.</div><div><br></div><div>S<a href="https://instagram.com/sixtonlondon?igshid=1vvzhne7fjyvc" id="id_85d_e69e_df93_4f73">ixton London</a>.</div><div><br></div><div>I only became aware of this company a month or so ago when I saw some of their beautiful bags and brooches in a small shop. I followed them on Instagram and saw this week that they are generously sending out free pairs of their funky socks to those having to selfisolate. No other reason but to brighten their day. I have nominated friends I know will be isolating for months due to health issues but I just thought what a lovely thing to do. Sixton, I salute you and your happy post!</div><div><br></div><div><img id="id_cfd4_ac3a_abd7_93d3" src="https://lh6.googleusercontent.com/dB4ZV_PbOIC-0oFGhQtF3sRO5yOR4rzm_iAzceobf2lNjnLpEAlCg62FG14DNqM" alt="" title="" tooltip="" style="width: 746px; height: auto;"><br><br><br></div><div><br></div><div><a href="https://leon.co" id="id_8b33_ee33_9ed1_89c2">Leon</a></div><div><br></div><div>So Leon isn’t exactly a small company but they aren’t huge either. I was seriously impressed that they shut down relatively early BUT more than that they are doing amazing things. You can still order their food I believe, healthy and delicious but any NHS or frontline staff get 50% off and are also doing free food drops at local hospitals which is brilliant. Excess produce was donated to food banks and they are setting up their restaurants as mini markets for the elderly to access food while also keeping their suppliers busy. Seriously awesome and a lovely company.</div><div><br></div><div><img id="id_2b6a_9f62_8604_91d8" src="https://lh5.googleusercontent.com/mdchLdgyIPMZClSYFp9GwbgjXSU7mja0Ef6kT1Jp1QTNAAHIGwfGGufa1wMqM-M" alt="" title="" tooltip="" style="width: 746px; height: auto;"><br><br><br></div><div><br></div><div><a href="https://www.honestburgers.co.uk" id="id_27b9_9345_4645_a217">Honest burgers</a></div><div><br></div><div>Very similar to Leon, they have donated food to food banks and are offering 50% discount and food drops to nhs staff. They have also set up extra ‘dark kitchens’ to send food deliveries from. Plus they have excellent gluten free options and their food is dreamy! </div><div><br></div><div><img id="id_4a1b_2187_92e5_bd17" src="https://lh5.googleusercontent.com/Up2N-5QRjxXnrsGpp8dHZZ-W4EvaBd2rkK0wIXzP_q3nOKbW7PYr0ABgZZ4eFRc" alt="" title="" tooltip="" style="width: 746px; height: auto;"><br><br><br></div><div><br></div><div>Carluccios </div><div><br></div><div>As above beautiful Italian food, lots of gluten free, home delivery option and 50% off for NHS workers.</div><div><br></div><img id="id_41c_c272_5647_fd49" src="https://lh5.googleusercontent.com/d_gMKc3NTUnZVTRwK8RbfAZO6VDv-sALhIk9V6BdvGWdpLyskQxNBIYof74JPns" alt="" title="" tooltip="" style="width: 746px; height: auto;"><br><br><div><br></div><div><br></div><div>Homesense </div><div><br></div><div>Have just made the cut by sending me an email as I was writing. Shut their stores but have donated all food products to food banks and are working with charities like The Red Cross to help those in most need with clothing etc. Particularly pleased as I adore their stores and they are my favourite to browse and shop.</div><div><br></div><div><img id="id_3019_ec1f_138d_9cb5" src="https://lh6.googleusercontent.com/SxNwHdyJrCS3kcoLia0aTpz2ogIhHv2FNuJd-T9JtU9EvAVEzyI6ZRO_JF7So8E" alt="" title="" tooltip="" style="width: 746px; height: auto;"><br><br><br></div><div><a href="https://ivyjoan.co.uk/" id="id_722c_614d_18a8_12c7">Shop Ivyjoan</a></div><div><br></div><div>Small business I found recently selling vintage and antique trinkets and finds. Have put together a Spread </div><div>Joy box, £10 with a choice of card that they will write your message in each gift contains a hand poured soy candle, and two small vintage gifts. A lovely way to make someone’s day and an innovative way to keep their business running. Real respect for those thinking of things like this plus they have gorgeous unique things so check them out! But please don’t buy it all because I want some! </div><div><br></div><div><img id="id_a1ae_333e_31fe_aaa2" src="https://lh5.googleusercontent.com/tExjpdFG4lGZvvIWNS-FpQjR_EJ7_6s7OgjjYIeuJ0p8DS-CmyFSmD-rC1w-OQ0" alt="" title="" tooltip="" style="width: 746px; height: auto;"><br><br><br></div><div><br></div><div><a href="https://www.jellyarmchair.com" id="id_4e3_8ff_e9ae_8b9e">Jelly Armchair.</a></div><div><br></div><div>Currently not trading but please follow on Instagram. They are a fabulous team who create the best pun based cards and illustrations. I bought lots of their cards and mum has them for her birthday (and mother’s day). Unrelated but they sent me a bag of goodies when I was having a rough time despite being a small business. Genuinely nice people as demonstrated by designing and printing lots of these help your neighbour cards for people to donate an amount to, then deliver to neighbours etc with offers of help. Promoting just being a nice, helpful, generous human beings really. <a href="https://instagram.com/jellyarmchair?igshid=13zckdpz1win8" id="id_a89e_3f9d_3447_4502">Definitely follow them</a> purely for the excellent puns if nothing else.</div><div><br></div><div><img id="id_70f7_9462_b75d_a2bc" src="https://lh5.googleusercontent.com/mi9lA8yWgRNom4Ycid1AOxYR3q-lE0g9IjB2LTTc4cC7DbV77Lv4Vp1ruBrkkBM" alt="" title="" tooltip="" style="width: 746px; height: auto;"><br><br><br></div><div><a href="https://www.thetheatrecafe.co.uk/2020/03/coronavirus-covid-19-london-theatre-bookings-and-the-theatre-cafe/" id="id_ef6c_7f96_bfad_9124">The Theatre Cafe</a></div><div><br></div><div>Great small business serving the people of the West End in their theatre themed cafe. As the whole of London theatre has closed for now, they are providing concert style live streams with West end performers who will be paid for their work. They support the west end and we should support them.</div><div><br></div><div><img id="id_8fc3_4641_fe3d_ba3d" src="https://lh4.googleusercontent.com/7gfaRK_tg3E1QBCYE6ZEu3-ANwgH_8kwtqTSkbdI-cWqsdp3UTMXFnrOqNszWlI" alt="" title="" tooltip="" style="width: 746px; height: auto;"><br><br><br></div><div><br></div><div>That’s it for now but wouldn’t it be lovely to do instastories or a blog post now and then celebrating these people who don’t just sit back but use initiative in a brilliant way while also helping others? Send me your suggestions! Xxxx</div><div><br></div><div><br></div><br><br><div><br></div><br><br>Torhttp://www.blogger.com/profile/16037224044391745374noreply@blogger.com4tag:blogger.com,1999:blog-178999393048722515.post-87616233784529185922020-03-19T18:14:00.001+00:002020-03-19T18:14:07.094+00:00#30daysofblogging Day 11; A RantApologies before I even write this post but you are getting a rant today. I am so frustrated right now, I really thought long and hard about writing this because I don’t want to be that person, but I think I might explode if I don’t say it.<div><br></div><div>It’s another Corona virus post which, gain, I don’t want to write about but it’s the most important thing right now and believe it or not I plan some positive blogs relating to it but today, is not one of those days.</div><div><br></div><div>The vast majority of those who read this post, these moans won’t apply to you. However I am so angry at all the people out there, in the Uk but abroad too who are not doing what the e parts are telling them to do. I know that it’s been confusing, believe me I’ve been vocal about getting laughable ‘advice’ when this whole thing started but now things are serious and we are seeing a change in how it’s being dealt with.</div><div><br></div><div>Certain countries are on lock down, we in England (and only slightly varied in the uk) have been advised to avoid restaurants, pubs, public transport; to stay at home in isolation as much as possible. Schools are closing as of tomorrow, theatres, cinemas and many restaurant chains, hotels etc have closed their doors. Obviously there are some exceptions to this but even then, everyone should take protective measures for themselves and society.</div><div><br></div><div>I can’t put it any clearer than this. Stay at home unless you absolutely have to go out and take precautions like gloves, covering your mouth, hand sanitizer, hand washing etc if you do. I do not mean going out to socialise or buy up the entire stock of your local supermarket. THAT IS NOT A REASON TO GO OUT. </div><div>While I’m here, will everyone STOP PANIC BUYING. There have been numerous posts from Italy, a country in lockdown who are still able to buy supplies that they need and have not got empty shelves because they aren’t turning into selfish expletives.</div><div>By buying things that others need 1) you are keeping them from those who need them, the elderly, those on low incomes, the vulnerable and small children (there is no way you need to stock pile baby milk if you don’t have a baby, even then you don’t need huge amounts). Also do you live in a mansion with a walk in freezer? Because if not where the hell is it all going to go?</div><div><br></div><div>There is plenty of information around. Use it instead of turning up at hospital if you don’t need to. These amazing NHS staff have actual problems to deal with, families they don’t get to see, breaks they don’t get to take because they are risking their own help selflessly to help us. DO NOT MAKE THEIR JOB HARDER. If I need to tell you not to steal hand sanitizer, masks, any supplies from a hospital, don’t ever come back to read this blog again and instead go and look at yourself in the mirror. You disgust me.</div><div><br></div><div>Lastly, will certain people QUIT YOUR WHINGING AND SELFISHNESS. I’m seeing people going on trips in the US because ‘well I’m going to party it’s my holiday/ I’ve had it booked for months’. If that’s your attitude then you don’t need to be getting drunk on a beach you need a course of bloody reality. I’ve seen people moan about cancelling holidays, someone in Bali moaning they had to come home a week early, people going against advice and eating out because ‘it’s my birthday!’. I’ve spent a birthday in ICU and consider myself lucky because it’s only been once. I know friends who have done this multiple times.</div><div>The chronically ill are often overlooked. We cancel things we have looked forward to all the time. Last year I planned to go for a special meal in March, 6 times we rescheduled because of health issues and ended up going in September. I’ve cancelled holidays, theatre trips, days out; you name it I’ve probably rescheduled it. I’ve lost money and faced severe depression and self loathing in the process, the eternal grief of cancelling things I look forward to. What’s more I know while armies of people in the same boat, those that like me, self isolate on a regular basis to avoid germs the majority of the world couldn’t care less about. Those who are bed bound. Bed bound. As in don’t leave their beds, for months or years. Those who are housebound who can’t join the rest of the world. Those like myself with little immune system who have survived so much but can be taken out by a simple cold. Plus thousands more with illnesses, hidden conditions, mobility issues, fatigue, pain, the list is endless who constantly live with the sadness of not being able to plan things, cancelling things they look forward to, are restricted in what they can do, are often isolated and are as terrified and fearful as most people are now, but constantly. In two or three weeks they will still be dealing with these issues when many won’t.</div><div><br></div><div>Basically suck it up. If you are lucky enough to be able majority of the time be grateful because for some, they are restricted full time, they are also the ones at greatest risk right now. Stop being so selfish and think what you can do to help not hinder. I’ll leave you with this as it sums up my thoughts pretty well.</div><div><br></div><div><img id="id_ad1_cec3_1daa_55bf" src="https://lh5.googleusercontent.com/14xjDvXX_fkaKE4-e5v84anMel40pYvYa8iRvsRxS9l-1Ir-ra8pSQB5o6um1C8" alt="" title="" tooltip="" style="width: 746px; height: auto;"><br><br><br></div><div><br></div><div><br></div><div><br></div><div><br></div>Torhttp://www.blogger.com/profile/16037224044391745374noreply@blogger.com0tag:blogger.com,1999:blog-178999393048722515.post-91904298101593711172020-03-18T22:27:00.001+00:002020-03-18T22:28:17.945+00:00#30daysofblogging Day 10; My mum. <div><br></div><div>There may be some of you out there who believe you have the best mum in the world. Sorry to disillusion you but that title belongs to my mum.</div><div><br></div><div><img id="id_e797_509c_c08c_2f1" src="https://lh5.googleusercontent.com/gvv7w1SmI1RGbGLqshvvsuCrRhh_q3aRhhdSd3uLG2pO3v5Z_0GBrIT5OKkfIss" alt="" title="" tooltip="" style="width: 307px; height: auto; margin: 4px auto; display: block;"><br><br><br></div><div><br></div><div>Today is my mums birthday. We are in self isolation so I knew it wasn’t going to be ideal, but damn it if I wasn’t going to do my best to make it special. I had some decorations already and I made a few more! I felt very ‘Good Life’ to be making my own! Thankfully I’d already bought her present as I try to plan early for birthdays etc as I’m not always able to get out and about as needed. </div><div><br></div><div><img id="id_59f2_a62b_faa4_8621" src="https://lh3.googleusercontent.com/C3HsPcaJ8Yosnz7M1R4PQmJPOUKiHERfHM2W2mfwFgQWm6b3wZO47qhTIJ0EKFQ" alt="" title="" tooltip="" style="width: 746px; height: auto;"><br><br><br></div><div>These paper fans were made from a stash of scrapbook papers. They were fairly easy to make and look really good! I’m slightly obsessed with making them now, I’m thinking some single sheets of posh wrapping paper would make some gorgeous ones. Also want to try and make them able to be folded down so they are reusable so I’ll work on that.</div><div><br></div><div><img id="id_c2bc_e2c8_a979_f33b" src="https://lh6.googleusercontent.com/yKYvko2ecx1fJMNRfYsxX2nsTjOkF1H-0G1iDWpU67WvKtWFdtAfCrrIRBf2V8o" alt="" title="" tooltip="" style="width: 746px; height: auto;"><br><br><br></div><div>Anyway, I decorated the kitchen before bed last night and made a meringue pavlova base. Mum isn’t into birthday cakes or really puddings but she loves a pavlova so that’s always her birthday cake! </div><div><br></div><div><img id="id_e96d_8962_d63_71e1" src="https://lh6.googleusercontent.com/aU9Zg-de9_a6tvfwtJyAfv2AY5GAv6252l7OkxTKXPQsKtITPh8TZ3H1CrnoaQ0" alt="" title="" tooltip="" style="width: 746px; height: auto;"><br><br><br></div><div><br></div><div>It was a quiet day at home. I made her some garlic prawns for lunch, nice, simple, tasty and quick. Then my speciality mushroom risotto for dinner so she didn’t have to cook. We were together and she saw family in doorstep/garden path visits. </div><div><br></div><div>The house is also full of flowers which is lovely! </div><div><br></div><div><img id="id_873c_61a8_cbe5_b1f8" src="https://lh4.googleusercontent.com/f321lC79vY5x_zs-5RifiocyTRiiYxY2W1zHKwVUvcfvy5aC1IhPBB4NXY0SW0A" alt="" title="" tooltip="" style="width: 746px; height: auto;"><br><br><br></div><div><br></div><div>I couldn’t get through all the hard times without my mum, there simply wouldn’t be any point. She is my rock. She does so much for me and others and would always be there. I love her more than anything in the world and our relationship is incredibly close. I don’t thank Cystic Fibrosis for much but the fact that it has shaped our closeness is something I will always be grateful for.</div><div><br></div><div>Doing extra work today has left me exhausted and high pain but it’s worth it to have made her birthday special. She always does the same for us.</div><div><br></div><div><img id="id_9269_e4f4_7f38_ccf1" src="https://lh5.googleusercontent.com/9Sy8nhAAIDvz_ZWXYt0L0Zc4neSDuQ1FSGoaVqPQe-hbV0DfeVInXFP2014_Ffs" alt="" title="" tooltip="" style="width: 746px; height: auto;"><br><br><img id="id_3b8a_be45_61b9_af5b" src="https://lh6.googleusercontent.com/DinGW_aroDSmgkFzXPvvrjwZq8Rs9NGsljrZ7rHzokaFDdmKQgTTTux5zuE4EzY" alt="" title="" tooltip="" style="width: 746px; height: auto;"><br><br><br></div><div><br></div><div>A London restaurant that is based in Covent Garden, <a href="https://www.joeallen.co.uk/?utm_source=GMB&utm_medium=organic" id="id_3699_d285_8fea_f9d0">Joe Allen’s</a> ran a competition about a woman you wanted to celebrate. Mum has wanted to go there for ages so I entered and....we WON! A three course meal and champagne, unfortunately we can’t attend while Corona is so dangerous but they have been amazing at letting us hold over the prize until we are able to travel again. I’m going to leave you with what I wrote about my beautiful, kind, loyal, wonderful mum. I’m so so lucky she is mine.</div><div><br></div><div><i><span style="-webkit-text-size-adjust: auto; font-family: UICTFontTextStyleTallBody; font-size: 17px;">Dear Joe Allen’s </span><br style="-webkit-text-size-adjust: auto; font-family: UICTFontTextStyleTallBody; font-size: 17px;"><span style="-webkit-text-size-adjust: auto; font-family: UICTFontTextStyleTallBody; font-size: 17px;"></span><br style="-webkit-text-size-adjust: auto; font-family: UICTFontTextStyleTallBody; font-size: 17px;"><span style="-webkit-text-size-adjust: auto; font-family: UICTFontTextStyleTallBody; font-size: 17px;">I would like to nominate my amazing mum Christine. I have had many health issues in my life. I was born with Cystic Fibrosis a genetic condition that effects mainly my lungs and digestion but has other conditions linked with it such as liver disease and diabetes (both of which I have!). 12 years ago my health took a bad turn and I was told I needed a double lung transplant or I would die. I waited 4 long years and was very close to the end, we had conversations with medical staff that no mum should have to hear. Thankfully I received my transplant and after a lengthy rehab am still going strong. Again, transplant brought its own long term challenges and days aren’t easy but I’m alive. 2 years ago I was given a completely out of the blue diagnosis of stomach cancer and entered the scary world of chemotherapy and surgery, scans, and blood counts. By some miracle I survived that too, battered and bruised but still here. There was not one minute along the way of any of this that my mum wasn’t beside me. If she could be in the room she was. If not she would be nearby and never came home or left me for more than a few hours. I live at home and need daily help and she is always there to provide it. I know I couldn’t have got through everything without her. She is the best thing in my life and there is no way to say thank you that seems enough and no words to express how lucky I am that she’s my mum.</span><br></i></div><div><i><span style="-webkit-text-size-adjust: auto; font-family: UICTFontTextStyleTallBody; font-size: 17px;"><br></span></i></div><div><i><span style="-webkit-text-size-adjust: auto; font-family: UICTFontTextStyleTallBody; font-size: 17px;">Tor x</span></i></div><div><i><br></i></div><div><br></div>Torhttp://www.blogger.com/profile/16037224044391745374noreply@blogger.com2tag:blogger.com,1999:blog-178999393048722515.post-72864703621256985272020-03-13T17:40:00.001+00:002020-03-13T17:40:58.487+00:00#30daysofblogging Day 9: Park LifeMy last post seemed to get quite a big response which was odd as I felt a bit nervous posting but I’m glad I did.<div><br></div><div>So as I explained, as there is still no useful advice from the government on how the elderly and those with health conditions should be dealing with Covid, we are having to decide what we are comfortable with as individuals. For me, I don’t want to fully self isolate too quickly, this could go on for months yet and that could mean me being stuck in my house for all that time when if I had not acted so quickly I could have another few weeks doing certain things outside these 4 walls. That said, anyone can be carrying these germs, anything you pick up could have just been handled by someone with Covid 19, we are not at all sure how it’s transmitted yet. Therefore, most outings feel super risky right now. </div><div><br></div><div>So while still assessing on a daily basis I feel happy to keep up outings in open spaces. One of the only places I’ll go is to the local parks. I wrap up warm, am not near other people, we are all outside in the fresh air and I get to have a change of scene without any physical contact in a low risk environment. Plus I get to see other dogs and animals which are way better than people anyway. </div><div><br></div><div>Being out in nature really boosts my mood too, seeing the spring flowers, the ducks and geese in the lake, green everywhere and crisp cold air. I’ve also got some bloody amazing photos if I do say so myself! The goose hissing below was hissing at my dog Lucky because he got a bit close! Hope you enjoy some of the shots I took.</div><div><br></div><div><img id="id_477b_c70e_10b9_26d1" src="https://lh4.googleusercontent.com/h5G9fEn2hTF9Lkq4Q0ZqBlZ8wxxZc7N-lFxRHcX5tHDFQZn5dyiYV_XlG5Q-57o" alt="" title="" tooltip="" style="width: 746px; height: auto;"><br><br><br></div><img id="id_cbc1_e7d5_7c3_2a9f" src="https://lh3.googleusercontent.com/UcJgz_M3SunTF5CKpkiZ3bIFiV1WIgTrmutU_ivxSUQR49OrDpO8Oe9ZsTUYGgk" alt="" title="" tooltip="" style="width: 746px; height: auto;"><br><br><img id="id_5631_5b81_88a8_c791" src="https://lh5.googleusercontent.com/_fCmFdMecSswWOGJZ7K15brXDBWCNW9tfVYNSGF2pE33u5rtivbdsPe6pjETMN8" alt="" title="" tooltip="" style="width: 746px; height: auto;"><br><img id="id_4eb2_e348_8eed_c9d1" src="https://lh6.googleusercontent.com/vlr9s4ZKY108dTBE1xa2gsTXeCljpTtZIufVJ-6W48xN6j9pzzx1yT8yH5G5Z18" alt="" title="" tooltip="" style="width: 746px; height: auto;"><br><br><img id="id_f35a_bd10_c9fd_6243" src="https://lh4.googleusercontent.com/oraDtpreJgWPKjCgyeO_11vZJMfNjKnANTSwb2Oys-9b9uShKiQlhfaRJlCTuHo" alt="" title="" tooltip="" style="width: 746px; height: auto;"><br><br><img id="id_2d7e_c42_bd1e_b8dd" src="https://lh4.googleusercontent.com/HRDQM9UAF5SSZlFQ4Q6-tEbnjFkzt3NrLcSzF_p_xoXpSi2ZRDUi3LQdem-eVQQ" alt="" title="" tooltip="" style="width: 746px; height: auto;"><br><br><img id="id_d2b3_c205_2464_9083" src="https://lh5.googleusercontent.com/lkYrAm8Le8b3-rZeRlmZODFSaN1TFx0hMCdpbghoVHSIGMRX-Mo0rCKH49WeJvs" alt="" title="" tooltip="" style="width: 746px; height: auto;"><br><br>XxxxTorhttp://www.blogger.com/profile/16037224044391745374noreply@blogger.com1tag:blogger.com,1999:blog-178999393048722515.post-81593442098180954852020-03-11T19:20:00.001+00:002020-03-11T23:12:47.792+00:00#30daysofblogging Day 8: Covid-19 (come on Eileen)I imagine you must have read about Coronavirus everywhere else, that you knew I’d tackle it at some point. Fun Fact before we start, you can say Covid-19 to the exact tune of ‘come on Eileen’ and once you do, that’s the way you will read it forever after. You’re welcome.<div><br></div><div><img id="id_4a12_13bb_14f8_fd97" src="https://lh6.googleusercontent.com/MX6vw3wxXv_gj_LMU14AA4Jzac8OcSoq_ui5Q0zVuzCNPtpgej2Q2NQ15hsw4Mw" alt="" title="" tooltip="" style="width: 385px; height: auto; margin: 4px auto; display: block;"><br><br><br></div><div><br></div><div><br></div><div>When you've read about this virus before, it’s more than likely to have been from a news or media outlet. I want to talk about it from a patient perspective. You know how everywhere keeps saying that the risks are minimal and Covid isn’t a big deal to those who aren’t older or with underlying health issue? How, when people have died it’s somehow reasoned away as ‘well he was 80 and had underlying health issues’ with the subtext of ‘thats not the norm, no wonder it killed him’? Well I’m (shock horror) one of those weirdos with an underlying health issue, several actually, who are brushed off as ‘not the majority’. So I am in the at risk group and I must say it’s been enlightening in many, all awful, ways. </div><div><br></div><div>Firstly, I’ll explain why I’m more at risk. As my mum put it the other day, in terms of Coronavirus bingo, I have a full house 😂. I already suffer with a weakened respiratory system, my body is immune suppressed since transplant meaning I pick up infections and viruses very easily. I have liver disease, I’ve had cancer which left me even more vulnerable and made my blood counts go a bit crazy so again with lesser immunity and I’m diabetic. So practically all the. At risk categories covered. We are being told we are most at risk, but given no official advice about what we should do to protect ourselves. Crazy right? </div><div>We are so a group of people that rely on hospitals and medicines to function daily yet these places are under hideous strain and are the worst places for us to visit in case we pick up the virus. We also have non Covid related medical needs that it’s hard to evaluate are worth risking seeing a doctor for.</div><div><br></div><div>However, it’s been really upsetting to see people on social media sneering about how everyone is panicking and this illness is nothing worse than flu. It’s a very cast away attitude to those who would be in danger from it. That’s why I have a flu jab every year. To protect me as my body couldn’t survive flu: sorry but there’s no corona vaccine yet so yes, I am very concerned. What’s the absolute worst however, is those people buying up every cleaner, sanitizer, storable food stuff etc when they simply don’t need it, or even worse, to sell for ridiculous prices. These people are keeping supplies from those like myself who really need them, who will depend on them. The are doing it out of fear, ignorance or plain profiteering. I’ve seen posts with individuals bragging about selling hand sanitizer for £25 a pop. It’s profiting from the vulnerable and knowing it. They disgust me.</div><div>It’s shown a really shocking attitude to how we treat the ill and vulnerable that sadly doesn’t surprise me.</div><div>As an immune suppressed patient I always carry hand gel and practise good hygiene which I’ve stepped up at the moment. I tend to buy a couple of the sanizer I use if I see them on offer as I use it so often and have plenty to get me through. However I could easily be running low or needed to grab some when next out and now, I wouldn’t be able to. </div><div><br></div><div>With every outlet telling us how at risk our subgroup are but simultaneously offering no specific advice on what the most vulnerable should do, I like many others have to make decisions ourselves based on our own circumstances. </div><div><br></div><div>I wouldn’t say I’m self isolating as such but it’s an issue we as a household do have to review. Any time of year I trust my friends and family not to visit if they are ill or coughing. I put off plans constantly due to this reason. It’s very hard to cancel things you enjoy but I tend to think of the transplant rehab and the many rounds of chemo and recovery that I’ve been through to survive to this point and think that I’ve not come all that way just to spend vast amounts of time fighting for my life because I caught something unnecessarily. Stupidly putting myself in danger when there’s no need. If people do turn up ill I will come upstairs to my room, if they are offended, tough. I’m offended that you think so little of me that you didn’t postpone.</div><div><br></div><div>That’s the other big problem, the minority group of people with pre existing health problems must rely on the rest of society at large to protect us. We desperately need you to practise good hygiene, to seek medical help only when needed, to cough into tissues and contain your germs, to use sanitizer and to self isolate when you are ill for the proper period of time in order to stop it spreading and multiplying. If everyone did this, the group most vulnerable would become a lot more empowered. This should in my opinion, be the thing being drilled into the population rather than scaremongering. The government should also have enforced this better. It is lunacy to be pushing things with large crowds like the St Patrick’s day london parade because it just encourages crowds and virus spread. I believe we could make huge positive changes to the situation but unfortunately that won’t be done.</div><div><br></div><div>So no visitors with coughs or germs, good hygiene, high home cleaning standards and avoiding going out as much as possible are the measures I’m currently taking. It sucks! I’ve already cancelled a family christening and a theatre trip but it’s better than risking my health because it’s a very real possibility that if I catch this I will die. Plain and simple. </div><div>That said my mental health is important too and sometimes I may need a break from being in the house which I’ll assess the risks of just as I always do. I’m hoping to continue with going to walk the dog in the park where there are open spaces and little contact with others but I’ll review as usual. In the meantime, I’m trying to make my environment at home, the nicest it can be by decluttering and giving it a little revamp because I’ll be spending a lot of time in here.</div><div><br></div><div>My plea to anyone reading this is please, please be sensible. Do what you can to help prevent the spread of Corona virus and most important of all, don’t be a dick.</div><div><br></div><div><br></div><div>Ps: I’ve just seen this article from the charity Wellchild which basically reiterated these issues and urges the government to help protect vulnerable children and young people. Well worth a quick read <a href="https://www.wellchild.org.uk/2020/03/11/wellchild-calls-on-government-and-society-to-step-up-for-vulnerable-children-with-serious-health-needs-in-light-of-covid-19/">https://www.wellchild.org.uk/2020/03/11/wellchild-calls-on-government-and-society-to-step-up-for-vulnerable-children-with-serious-health-needs-in-light-of-covid-19/</a></div><div><br></div>Torhttp://www.blogger.com/profile/16037224044391745374noreply@blogger.com1tag:blogger.com,1999:blog-178999393048722515.post-43805095794040405432020-03-10T18:26:00.001+00:002020-03-10T18:26:37.465+00:00 #30daysofblogging Day 7: update Thank you to everyone who messaged me after my last post, I thought I would give you a little update. <div><br></div><div>To cut a long story short, yesterday my team at Harefield sorted some much stronger laxatives for me. They also told me that while ideally they want to limit their patients exposure to hospitals right now, if I want to get checked out then I’m very welcome to go up. Immediately I felt a bit calmer knowing I had a plan and wasn’t isolated with the problem. I’ve also just had a call (6pm) from a registrar phoning to check up on me, which I doubly appreciate when the hospital is under so much extra pressure with Coronavirus. </div><div>Anyway the laxatives, Gastrografin is the stuff of legend in Cystic Fibrosis circles, if you’re taking those your stomach must be screwed up! They are also renowned for being absolutely disgusting to drink. I’m having 2 bottles each day and let’s say the situation has gone from one extreme to the other! It is the most foul tasting liquid and each bottle is 100ml. After slight experimenting I find taking a shot of it in one huge gulp, followed by tea to wash mouth and something strong tasting to over power the taste. I’d describe the taste as a very potent mix of strong aniseed/liquorice crossed with mouthwash. </div><div><br></div><div>My stomach is a bit softer today and is gurgling which is good. It’s still pretty swollen but, a little bit less than it has been. Unfortunately, even with diarrhoea, you can still have blockages which take a few days to go so I’ve got another 8 bottles most likely to get down. I’m really hoping though that it continues to improve a little each day. I’ve not even been able to wear leggings the last 4 days, just pj bottoms that are not so uncomfortable.</div><div><br></div><div>These things sadly don’t happen in isolation, I have other non medical stuff happening which is a bit rubbish as well as just feeling utterly run down physically, sensitive teeth, skin going crazy, and feeling below par to name just a few symptoms. I’m also staying at home firstly due to an emergency need to be within 20 seconds of a loo! And secondly because Coronavirus is a very serious threat for me (I’m planning to blog about this tomorrow). My mental health is very sketchy, but I am able to clearly understand why which is important and I know that feeling isolated at home is a sure way to make my depression kick off, so again it’s risk vs benefit balance.</div><div><br></div><div>Again, thanks for those who tweeted or messaged, I’ll hopefully be back to blog again tomorrow x</div>Torhttp://www.blogger.com/profile/16037224044391745374noreply@blogger.com1tag:blogger.com,1999:blog-178999393048722515.post-73315693687172812482020-03-08T19:07:00.001+00:002020-03-08T19:07:02.025+00:00 30daysofblogging Day 6; No S**t! So, unfortunately I had to take a couple of days out already. Usually I’d really beat myself up about this but <div>1) I have a good reason </div><div>2) I don’t want to ‘force’ posts for the sake of writing everyday.</div><div>3) you will still get 30 days and they will be regular, if it’s not every day, that’s ok.</div><div>4) I’m not even sure anyone is reading! Please say hello if you are.</div><div><br></div><div>Anyway. I’ve hinted that I’ve not been feeling the best these last few days and I thought I would explain why, now I’m slightly less scared and the weekend is over so I can actually get more help.</div><div>With Cystic Fibrosis bowel blockages are common. I am lucky enough to never have experienced one until now it seems. For over a week my stomach has been constantly so bloated that I look 7 months pregnant, I’ve been really uncomfortable and not able to go to the loo much. My system is very sluggish and I do take daily laxatives to keep my system running smoothly. Btw apologies but when you have CF and indeed stomach cancer, you talk about poo so much that it’s normal, won’t get more graphic I promise. </div><div>I’ve gone from taking one daily gradually up to 7 with no real improvement. So not only do I feel really not very well but I’m also slightly concerned. Stronger laxatives are very common for CF but not if you’ve never experienced this level of constipation before you don’t have these on standby. So after drinking so much water, hot tea, hot lemon water, mint tea, and constant rounds of heat pads, massage, exercise, and TENS machine with no improvement at all you start to worry. Add to that the fact I’ve had stomach cancer, and surgery to remove a portion of my stomach and intestine. That I had a insusseption which I know very little about but know that can result in a preforated bowel and I haven’t slept, have searing back pain from such a distended belly and breathing is tricky. Panic rises.</div><div><br></div><div>Also the weekend so no one to really advice, and to top it off, the country is in a state of emergency with Coronavirus, that is a huge risk to those are immune suppressed, diabetic, cancer patients (yes, yes and yes) you don’t want to visit A&E or your GP. They don’t want to see you either as you are extremely specialised and they don’t want to risk killing you somehow. </div><div><br></div><div>This is how something really quite simple, rapidly gets out of hand. Ironically, neither of my main hospitals are specialists in bowel issues.</div><div><br></div><div>What’s particularly upsetting is that we had planned to leave today on holiday. Just for a few days but the dog was going to his sitter, parents had booked a hotel and I was staying with my best friend who I don’t get to see often. We had plans and ideas and visits (to the Emma Bridgewater factory, I have become addicted and put aside money to treat myself) she had got shopping in. And we couldn’t go. I’m sitting at home as swollen as ever. Gutted to have let people down and knowing with the virus in full swing I’m going to be staying at home more and more.</div><div><br></div><div>Mentally I’m feeling quite down. I’m trying to keep a bit of a distance from sliding into the pit of feelings. It’s working but I’ve also had some serious break down ugly crying too. Ive felt extremely isolated alone and uncared about. I’ve had a viral thing for weeks now that goes but then seems to start coming back. A blocked ear, stuffy nose, scratchy achy throat the flare up and down. I’m exhausted from everything, look as white as a sheet and my usually very clear skin has tonnes of under the skin spots which I can only guess may be from the sheer amount of water I’ve drink to flush my system?! Any ideas?</div><div><br></div><div>My incredible gastroenterologist replied to my panicked email on a Saturday night (he is an angel) and has put my mind at rest that I’m doing the right thing and need to get my hands on some stronger drugs to try and if not get myself checked out, so getting stronger laxatives is tomorrow’s task.</div><div><br></div><div>I hope you all didn’t find this post too uncomfortable to read but this is my reality at the moment so I wanted to explain it.</div><div><br></div><div>Xx</div><div><br></div><div><br></div><div><br></div><div><br></div>Torhttp://www.blogger.com/profile/16037224044391745374noreply@blogger.com7tag:blogger.com,1999:blog-178999393048722515.post-83162380300683184502020-03-05T19:19:00.001+00:002020-03-05T20:26:02.756+00:00 #30daysofblogging; Day 5 World Book Day<div><img id="id_dac8_368a_dbd8_bbce" src="https://lh6.googleusercontent.com/ZAzDHNj3254-RCqHFtubFvWmIhmhoPaYizqYO04l7AhZIBl1Lk4aNLhnvRmp8Ak" alt="Both bought from The Literary Emporium " title="" tooltip="" style="width: 385px; height: auto; margin-left: auto; margin-right: auto; display: block;"><div style="text-align: justify;"> Both bought from The Literary Emporium</div><br><br></div><div>Apologies for the lack of blog yesterday. It was a pretty horrendous day. I’m still feeling rubbish physically but after a few days looking for my beautiful embroidery scissors. Today we found them, behind a gap in the skirting board... behind my radiator. As you can imagine hilarity ensued trying to fish them out, it took hours we couldn’t see them and mum and I were hysterically trying to use a coat hanger to hook them which remarkably somehow she managed. You couldn’t make it up and I laughed so hard I honestly could not sit up. It hasn’t transformed my mood but it’s a start.</div><div><br></div><div>Anyway, today is World Book Day and I felt like writing about my love of reading. Now the more I thought about it the more must reads I wanted to mention and memories came up so I’m going to try and compress it down a bit. I want to talk about my love of books as a child but if you’re interested I’m happy to bore you some more with books I love as an adult. </div><div><br></div><div><img id="id_329_4fee_f673_49a1" src="https://lh5.googleusercontent.com/GBG4G_3GptgY29-DouJkqsXJg68HBrQs4f9btuTOMYXLYOhQmk-zUy0jjJ1Ndt0" alt="" title="" tooltip="" style="width: 746px; height: auto;"><br><br><br></div><div>Reading was a huge part of my childhood. My mum used to read to me everyday, I started reading quite early and never looked back. I was always one of the first to be on the highest reading level at school. My mum used to record herself reading my books onto a cassette (yes I’m that old) and then I’d play that and listen to them over and over while I did other things. Audio books from the library were also a big favourite. Although not physically reading, I got captured by the characters, the stories and the voices of those who read. Off the top of my head, mum read a lot of Mr Men books and our special one was Mr Skinny. It was a conStant struggle to gain weight (like more than you can imagine) and I needed extra weight to fight infections. Not to ruin it for anyone but at the end of the story Mr Skinny gets a tummy (ironic as I post this currently bloated to look 8 months pregnant). I used to adore My Naughty Little Sister stories, read by Felicity Kendall whose gentle but mischievous voice I can hear now. Wind and the Willows I remember a lot too although never a favourite, my abiding memory was Toad yelling ‘Poop poooop!’ From what I’m now wandering was David Jason’s voice.... Pam Eyres frequently read me a story about a little pig called Piggo, who I think was the smallest of his brothers and sisters.</div><div>The Worst Witch books were devoured, as were most things really. I loved Enid Blyton everything, the Far Away Tree and the Wishing Chair. Secret Seven, Famous Five. </div><div>In my day (!) we didn’t dress up for book day. But I can remember my excitement at the staff wheeling the bookcases into the hall, full of all kinds of books. We each got a voucher for money off and I was allowed to browse and pick one out. Definitely one of my favourite school memories. I remember buying a Michael Morpergo Book with 3 stories. One called The Marble Crusher, ended up reading all his others after that.</div><div><br></div><div><img id="id_45b8_7f31_5f15_de79" src="https://lh6.googleusercontent.com/L7yGHK1PiOM4YyhQTJGVguBeS7sH01asBDQXeukzTNvr3aA3foCzK77ymRb48hI" alt="" title="" tooltip="" style="width: 746px; height: auto;"><br><br><br></div><div><br></div><div>There are too many to mention but believe me I read a LOT! At school I remember reading a series called My Best Fiend, Charlie was the main character and her best friend Angela was always getting her into trouble. I don’t know why she put up with it so long if I’m honest. Jacqueline Wilson’s books were every girls dream and I ate them up in particular The Ilkustrated Mum and Lola Rose spring to mind. For some reason I think I must have got one of these for Easter as it really reminds me of that. I never had any appetite and eating was a chore so books were far more interesting to me than any sweet shop.</div><div><br></div><div>Roald Dahl is iconic to any childhood reader. I only have to see a Quentin Blake illustration and even now I get a happy little jump inside! His books are exciting, adventurous, dark worlds, where there are awful, disgusting, terrible people but you can’t getenough of them! My favourite book was George’s Marvellous Medicine, and the Twits. I adore the original film of Willy Wonka and Matilda. I loved the books too but those films are deeply a part of me. </div><div><br></div><div><img id="id_de11_5b7a_9510_f19f" src="https://lh3.googleusercontent.com/zCgJAYv7Q6rz5IcHc1r2aa7HpqKYv0MGKKY05dRQWyZE15VTujm8-9N1nYpWUaQ" alt="" title="" tooltip="" style="width: 746px; height: auto;"><br><br><br></div><div><br></div><div>Harry Potter can probably encapsulate the feeling I get when I read maybe best. If I find a good book or even better a series of books then I have found bliss. I found this out when a few weeks ago I read the His Dark Materials trilogy and as an adult couldn’t put the books down. It reminded me vividly of Harry Potter. I was fortunate enough to have grown up in the golden age of Potter, the first 3 I think were out when I started reading them. Then every time we had to WAIT for JK to write the next one! The waiting though made it even better. I’d regularly go through and reread the previous books waiting for the next. There were countdowns for the next book, people queued at midnight and every time my dad would have the next book waiting for me when I woke the next day. No word of a lie I would often read it in one sitting. Curling up with a book, cancelling out the real world to enter another as fast as your eyes can read it. It was like a sickness, all encompassing until it was finished when you came out of your haze and in the the words of Ron Weasley thought ‘Bloody hell!’. </div><div>I experienced this utter joy all over again with His Dark Materials and many other books a long the way. </div><div><br></div><div><img id="id_767b_6680_7d5a_5577" src="https://lh3.googleusercontent.com/o6Nb2810Wku5Lv6B3Evz_HFFEUPq3Es9VpFwButlFQz29TkVR6Liv9tacQhSVKI" alt="" title="" tooltip="" style="width: 746px; height: auto;"><br><br><br></div><div><br></div><div>It makes me sad that neither my niece or nephews have the vociferous need to read that I did at their age, purely because they are missing out on something so magical. I hope it will come to them in time, it only takes that one read to start the obsession.... </div><div><br></div><div>PS All these photos are of my own well-loved, well read copies. X</div>Torhttp://www.blogger.com/profile/16037224044391745374noreply@blogger.com1tag:blogger.com,1999:blog-178999393048722515.post-15522597693206196172020-03-03T18:44:00.001+00:002020-03-03T18:45:09.533+00:00#30daysofblogging Day 4; Not today <div><br></div><div><img id="id_13b9_afa1_12b3_5f73" src="https://lh5.googleusercontent.com/tbBUqMgk9vX0Sj7g8Ic5U5Jy1d1HVuzlZu3DDeHxgdVrx2WlNgO6sDlNE1AaqD0" alt="" title="" tooltip="" style="width: 457px; height: auto; margin-left: auto; margin-right: auto; display: block;"><br><br><br></div><div><br></div><div>Number one policy on this blog is honesty. </div><div>Today I’m feeling crap, mentally, physically, on every level just bleh. I found the motivation to post and that was bloody hard but I’m here and I’m doing and I’m a bit proud of that. For some reason at the moment I am feeling horrendously run down, and I spend a lot of my time/energy thinking ‘no I’m ok its just a blip, I’ll start feeling better soon’ but I’m not really. I had a virus thing about 6 weeks ago, had extra medication to stop it hitting my chest, took ages to get over by I felt I had. But I feel better then get a sore ear, scratchy throat etc, not enough to be ill but enough that I feel rubbish, it goes off again but I only have to exert myself and it’s back as a warning. My stomach is also looking like I’m about 8 months pregnant. Not unusual for me, it often bloats out, goes down again but at the moment it’s just bloated, all the time. No offense by I know my stomach best and can usually cajole it out of a mood but right now I can’t. Add to that the usual pain, fatigue, and I’m pretty sure a sinus infection and I’m just done. </div><div><br></div><div>I also tick practically every of the ‘at risk’ group for Coronavirus and it becomes really hard to function. Debating what outings will help my mental health against the risk associated with doing them.</div><div><br></div><div>Right now a lot of things are going on and I do feel I’m having to act as though everything is ok. People know it’s not but I don’t know what to do so I’m just carrying on despite it feeling extremely hard at the moment. Others need attention and I don’t want to add to the pressure. Going to bed is a highlight because I can just ‘be’, quiet, and tired and not worrying what my face is showing and just escape for a few hours from it all. </div><div><br></div><div>Sorry for the miserable post but hopefully things will start to improve soon. </div><div>Xx</div><div><br></div>Torhttp://www.blogger.com/profile/16037224044391745374noreply@blogger.com1tag:blogger.com,1999:blog-178999393048722515.post-66547578147609247312020-03-02T22:14:00.001+00:002020-03-02T22:14:02.564+00:00#30daysofblogging Day 3: Volunteer<img id="id_94dc_9e45_6f67_aad6" src="https://lh5.googleusercontent.com/lbdcDfBcp2XPg9j42vc9WMD2Cge4aJVNnANfmZjzIuSp7IRHf_3fYi8UzQCl0uk" alt="" title="" tooltip="" style="width: 442px; height: auto; margin-left: auto; margin-right: auto; display: block;"><br><br><br><div>Carrying on from yesterday’s post I wanted to tell you about my experience on Saturday.</div><div><br></div><div><br></div><div>A good few months ago I was in my local town and saw a lady doing a bucket collection outside one of the stores. Basically standing with a bucket that people can drop money into that then goes directly to the charity in question for those that aren’t familiar.</div><div>Being a strong 32 year old woman I made my mum go and speak to this lady about how you could volunteer to do collections like these and get involved- turned out she was the lead fundraiser in the area so had all the info. The charity was Macmillan.</div><div><br></div><div>I remember as a very young child going with my mum and dad to do collecting for CF before really it was a well known charity. I always quite enjoyed it from memory but I know mum especially used to get downhearted by lack of donations and sadly a lot of filthy looks as though she was begging on the street. </div><div><br></div><div>So a long story short I volunteered and mum came with me for the first attempt, to do a local collection when the chance arose. How it works is that the charity told its supporters where and when they had permission for a collection, in this case Tesco. Volunteers then respond back if they can make it. There’s no obligation to do a certain amount. Then we decided on our time slot 2-4pm and I mentioned I would need a chair as I couldn’t stand for that long. </div><div><br></div><div>We turned up, everything was ready. We donned our sashes and grabbed our baskets. I’d been feeling a bit trepidatious to be honest, wondering what people’s reaction would be, if we would have any nasty remarks or challenges, would people be generous, would I enjoy the experience? I needn’t have worried. </div><div><br></div><div>It’s easy to think ‘oh come on it’s only the change you just got shopping you can spare it’ but for a start, many people can’t. For another many don’t carry cash anymore just cards. There’s also the fact that ‘giving fatigue’ is a real thing. In daily life you are asked to support this cause and that one, collection boxes at till points, pleas for direct debits, emails asking for support with personal stories attached, the list goes on and on. You can’t support everything. End of story. </div><div><br></div><div>I support quite a lot of charities but how and when I can. Macmillian is a cancer support charity and they do an amazing job supporting patients during and after cancer. I’ve had to phone with medical queries and someone is at the end of the phone 24/7. They can advise you and call ahead to the hospital etc if necessary. You meet them at clinics etc and I cannot adequately describe the amount of help they offer. There website I found to be a godsend. They have so much information on all cancers and while giving detailed information I found it to be put in a way that wasn’t terrifying as so many other sites were. They had a whole range of leaflets at the hospital with advice on benefits, pain, exercise, body image, nutrition, everything you can think of. I am really grateful for their support.</div><div><br></div><div>Anyway, back to collecting. It was a lovely experience. First of all because people were indeed very generous. More than that though, it was nice to have that contact with people. 99% was just a smile and acknowledgment, other times a few words of conversation. I realised that to smile at people and make eye contact, just for a second, really made a difference, more people donated and majority of those who didn’t seemed to enjoy the contact as much as I did. How often do we take a second to look at someone and smile, then receive a smile in response? Hardly ever when you’re busy marching to the next very important thing, or zoning out on our phones or heads buried in newspapers or just tired and shutting out the world. Honestly try it. Sometimes they won’t smile back but don’t be defeated! When they do it’s a lovely glow of satisfaction.</div><div><br></div><div><img id="id_8a75_11ac_fc61_4ecb" src="https://lh4.googleusercontent.com/kxsUCS-uYe1hXirZRfG8iwHJTO-dfO8n7Z1TJny72Ou4S6BeHpKHzDRM7-RMu4c" alt="" title="" tooltip="" style="width: 349px; height: auto;"><br><br><br></div><div><br></div><div>The point of this blog is to say that I loved collecting and was proud of trying something new and pushing through the anxiety to do it anyway. I will be doing it again. However my main point is that in this blog alone there are a few ways of giving and most don’t involve spending money. Obviously charities run on money and any you can spare will help immensely. Something as valuable though, is your time. Volunteering your time and skills can make a huge difference to a charity. Volunteer to do a collection, or go litter picking. Offer to walk dogs at a local shelter, offer to pick up shopping for an elderly or disabled neighbour. Could you cook at a soup kitchen or hand out leaflets on a stall? Plant some flowers in a community garden to make it a nicer place to live? </div><div>Honestly the possibilities are endless and only you know which charities you want to support and what you have to offer that they might need.</div><div><br></div><div>If you aren’t able to do any of that (I’ll be providing more ideas in the next few weeks) then simply smile at someone. You might make there day and if it doesn’t? What have you lost?</div><div><br></div><div>Xxx</div>Torhttp://www.blogger.com/profile/16037224044391745374noreply@blogger.com3tag:blogger.com,1999:blog-178999393048722515.post-30921906773465613052020-03-01T18:06:00.001+00:002020-03-01T18:06:26.958+00:0030 days of blogging Day 2; Giving <div><br></div><div>It’s only day 2 and I am vaguely panicking about what to write! Good start Tor.</div><div> So I do have ideas and bigger subjects I want to tackle but it doesn’t feel the right time to deal with them just yet. </div><div>There’s a nice discipline to writing each day but also a pressure of ‘what to write what to write?? Make it something good!’ That it’s easy to fall into but I’m keen not to! </div><div><br></div><div>So I was actually requested more than once to talk about acts of giving and kindness. </div><div><br></div><div>Now, I’m making it very clear that I do not consider myself some saint like creature who is an expert on bestowing kindness wherever I go whilst bathing in the glow of my own brilliance. Far from it. But I can see why people asked me to talk about it. Firstly, I come from a place of seeing the need for help. I’ve been on hospital wards, felt lonely, seen opportunities to help etc just by being in that environment so often. I’ve also experienced a lot of kindness myself, appreciate it and am inspired by it. I enjoy paying good deeds forward and there is definitely a need in me to give something to others. I think one of the biggest reasons though is that I have a lot of time to find these opportunities, I have less commitments like work, kids etc to find and try them. People are so busy that they don’t not want to help they just don’t quite know how and it’s not a priority to find out. Completely fair.</div><div><br></div><div>Good news is it can be so so easy and also cost nothing. So incorporated in this 30 days will be things I do or have done that ‘give back’ in some way. It’s not an exhaustive list by any means but might give you ideas or just be interesting. </div><div><br></div><div>I’d love to hear your experiences and ideas too. X</div>Torhttp://www.blogger.com/profile/16037224044391745374noreply@blogger.com0tag:blogger.com,1999:blog-178999393048722515.post-9645654007144029872020-03-01T00:03:00.001+00:002020-03-01T00:03:21.265+00:0030 Days of Blogging: Day 1 what’s wrong with me?Like I said before my friend Oli is doing a version of this over on his YouTube channel <a href="https://www.youtube.com/user/olilewington" id="id_56c8_5a7d_70f8_e134">(here)</a>and he made a video explaining his multiple conditions so again, I’m nicking his idea. Oli I promise I won’t just steal all your ideas but it seemed a good way to start my 30 days.<div><br></div><div>Most of you know, I have a few obvious conditions but I probably have more than you think! This isn’t at all a pity plea, or a toP trumps of the medical world. Just informative especially for new readers.</div><div><br></div><div>1) Cystic Fibrosis: is a genetic condition that effects every part of the body but usually the lungs, stomach and pancreas are most badly effected. The body produces a thick sticky mucus that clogs the organs which impairs their function. Excessive mucus in the lungs means they become a breeding ground for bacteria, constant infections cause scarring and damage to the lungs which often leads to the need for a lung transplant. Which leads me nicely on to.....</div><div><br></div><div>2) Double Lung Transplant: When lungs become so damaged by Cystic Fibrosis it often comes down to a lung transplant or dying. Transplantation is not a ‘given’ you have to be extensively tested to make sure you’re ill enough to need a transplant, but not so ill you won’t be likely to survive the big operation. Transplant is also not a cure for CF. Only the lungs are replaced and because CF is genetic, it can’t damage the new lungs. However CF is far reaching as I will discuss further on.</div><div><br></div><div>3) Pancreatic insufficiency: directly linked to CF I don’t produce the enzymes I need to break down and digest food. I take replacement enzymes when I eat to break down food. Forget to take them and any CF patient will tell you, stomach cramps and being attached to the loo for long periods of time will ‘encourage’ you not to forget again!</div><div><br></div><div>4) Cystic Fibrosis related Diabetes: its not type 1 diabetes or type 2, it’s a type specific to CF sufferers. The mucus I mentioned earlier clogs the pancreas until it fails to produce insulin anymore. Many Cf patients take steroid as part of the treatment regimens which is also a factor in developing diabetes.</div><div><br></div><div>5) Osteoporosis: malnutrition from not digesting food adequately often causes loss of bone mass.</div><div><br></div><div>6) Liver problems: specifically for me, an enlarged liver and Spleen. I’ve mentioned before that liver stuff terrifies me but *touch wood* I haven’t had many issues with it. There is damage, it’s not ideal but it’s working and I love it more than I can say for that. Does make surgery riskier for me though.</div><div><br></div><div>7) Stomach Cancer diagnosis: I was diagnosed with stomach cancer in late 2017 completely out of the blue. In order to have a transplanted organ and stop the organ being attacked by its host body, you must take anti rejection tablets for the rest of your life. These are strong, toxic drugs that keep me healthy and alive, however they have nasty side effects of which cancer is one of them. It’s not that common but obviously terrifying. I received a year of treatment; chemotherapy, surgery to remove half my stomach and then more chemo which has so far kept the cancer away.</div><div>I am high risk of cancer returning and it becomes very involved when needing treatment as my other conditions prohibit what I can have. </div><div>I’m regularly checked with blood tests and scans to make sure we are on top of the situation.</div><div><br></div><div>8) Sinus issues: same deal with CF in other areas, thicker mucus, more infection. Often sinus infections and facial pain. Past surgeries.</div><div><br></div><div>9) Chronic Fatigue: I have a degree of adrenaline insufficiency but after extensive tests, fatigue is just something I live with and can’t really be improved much. It’s soul destroying because you never know how you will feel on a daily basis.</div><div><br></div><div>10) Chronic pain: I get pain in my joints, hips and mainly back. My pain relief of choice is oxycodone a signed for drug but works well generally. Standing in particular really causes pain but bad as it sounds anything can trigger me. My muscles are also very weak made worse due to steroids. I’m also hyper mobile which means I’m very bendy so I require even more muscle support which I can’t because of the steroids and weakness.</div><div><br></div><div>11) Depression and anxiety: Conditions that can obviously effect anyone but for me are definitely influenced by my physical health tremendously. Specific links include survivors guilt that I feel both for friends who haven’t survived the same situation as me and for my donor.</div><div><br></div><div>12) Immunosuppression: My immunosuppressant does what it says on the tin. Having a repressed immune system means I pick up viruses, infections and anything going much easier than others. Therefore I take extra measures with using tea tree oil (a natural antiseptic), regular hand washing, using hand sanitizer and often traveling at quieter times to avoid crowded public transport. If anyone in the family are ill I avoid contact even if that means missing out on family gatherings or seeing friends. I’ve also had times especially during chemotherapy that I’ve become neutropenic which means I’m basically without any protection from my immune system. During these times I’m either kept in isolation in hospital or at home, not leaving until the numbers of white blood cells start to improve.</div><div><br></div><div>13) Unspecific but my conditions effect me everyday. Sinusitis causes headaches. I’m always in some degree of pain. I get fatigued and have to cancel plans both short term and plans for the future. My stomach bless it, has gone through hell and back and often has issues with pain, bloating, rushing to the loo, all of which are very uncomfortable.</div><div>My conditions impact every day of my life and my needs change throughout the day. </div><div><br></div><div><br></div><div><br></div><div><img id="id_f7e6_696d_fba5_ebe3" src="https://lh4.googleusercontent.com/0R3o2lPftsg3vpkFQcPA0Cj0l6_TObYuRbTJrcwdQC9xDh4e7g4ixVJ73-Iz-Tg" alt="" title="" tooltip="" style="width: 385px; height: auto; margin: 4px auto; display: block;"><br><br><br></div><div><br></div><div>And I *think* that’s it. I may have missed a couple but that’s all I can think of tonight! I hope I haven’t made you depressed as the post wasn’t in any way meant for that. I just wanted to explain my conditions, tell you something you might not know and fill you in a little more about me. Even with all these issues, I still live a life. Not always the kind of life I want and I get plenty frustrated but it’s still a life and I’m still here.</div><div><br></div><div>If you’d like to know more about Cystic Fibrosis and it’s associated conditions please visit <a href="https://www.cysticfibrosis.org.uk/#" id="id_9d33_8ed4_e3f9_d286">The CF Trust</a>.</div><div><br></div><div>For more information on stomach cancer and cancers in general please visit Macmillan Cancer Support.</div><a href="https://www.macmillan.org.uk" id="id_f884_54b1_853a_84c1">Macmillan Cancer Support.</a>Torhttp://www.blogger.com/profile/16037224044391745374noreply@blogger.com5tag:blogger.com,1999:blog-178999393048722515.post-71062904793237198522020-02-28T22:40:00.001+00:002020-02-28T23:00:26.437+00:00 30 days of me<div><br></div><div><img id="id_cdb8_7ff_7898_80b0" src="https://lh5.googleusercontent.com/MHRtwHnPrbdQkXoYqBiMKykJ4q169rWoPA4hOoU6c-fCXIuFVp8tMkRAHJ39A9I" alt="" title="" tooltip="" style="width: 307px; height: auto; margin-left: auto; margin-right: auto; display: block;"><br><br><br></div><div><br></div>Well hello.<div><br></div><div>It’s been ages. Not all bad but not all good either.</div><div>There have been many times when I’ve wanted to write but just haven’t had the words or the energy or have felt I needed to give a full explanation and haven’t let processed the whole thing myself yet let alone known how to explain it to others.</div><div><br></div><div>Anyway, I have really wanted to get back to blogging and desperately need some structure in my life (we’ll get onto that eventually). So inspired by a friend who is also going through similar issues and decided to make a YouTube video every day for 30 days, I’m going to attempt something similar.</div><div><br></div><div>I need the discipline to hopefully get back on the blog band wagon, so I’m going to try and write regularly, too much pressure to be tied to every day, so hopefully most days but sometimes every other day, or even every couple ‘god forbid’. I’m not sure what I’m going to be writing about. I want to give you some updates on what’s been going on. Maybe talk about some issues or ideas I have. I’m also open to hear what you would like to read about if you have anything you’d desperately like to see. </div><div><br></div><div>Some days might be full blog posts, others just a few lines but it’s the commitment I’m trying for. </div><div><br></div><div>And so let the 30 day blogathon commence! </div><div><br></div><div><br></div>Torhttp://www.blogger.com/profile/16037224044391745374noreply@blogger.com1tag:blogger.com,1999:blog-178999393048722515.post-22462792622995302732019-11-21T15:16:00.001+00:002019-11-21T17:10:17.401+00:00A different kind of fighting.<div><img id="id_9749_e63b_f0d2_bb2d" src="https://lh5.googleusercontent.com/CT7QpqNpBlh_4fnQWwZgKlGk8hdAVtzCZxzusaMiEiNKKJX8Lp-JceMwHhc" alt="" title="" tooltip="" style="width: 746px; height: auto;"><br><br><br></div><div><br></div>I wanted to write a little update....without an update! Nothing else to report medically that has (knowingly changed) more how I feel and how I’m coping. <div><br></div><div>Honestly, these last couple of weeks I’ve been an utter mess. I can’t even tell you how much has been pounding through my head. All the options in front of me, the repercussions, the potential problems/benefits, the fact that I by no means have all the information that I need, so everything was made even more uncertain. The fact that I need to fight again, the way it feels like the year I spent in treatment was for nothing. Wondering what will happen. Being terrified of dying. On top of the usual suffering physically but now with a hefty dose of anxiety related problems; shortness of breath, dizziness, panic, feeling faint, shaking etc.</div><div>Also the feeling of bringing this horrible news down on my loved ones yet again. Knowing I’m hurting them. And as a nice top off, a fair amount of fakeness, misinformation, disappearing acts and general ignorance from certain people close to me. It has been torturous.</div><div><br></div><div>So I spoke to my psychologist and told him I was in desperate need of an appointment. He arranged this for me and I am so grateful he did and realise how incredibly lucky I am to get an appointment so quickly when I know many others don’t. Despite wanting to speak to him I also couldn’t think of anything worse than talking to him. I’ve noticed this generally, I don’t want to talk about cancer, yet at the same time cannot stop talking about it. I guess it’s my brain trying to sort out the mess of everything coming at it.</div><div><br></div><div>Anyway, we chatted for an hour, I cried. I knew before I answered the phone that he could do absolutely nothing to change my situation. He sadly doesn’t have a magic cancer expelling wand. I couldn’t see how he would help but also was drowning by myself and needed to try anything I could. </div><div><br></div><div>And it did help. Not really in any way I can explain other than him helping my poor brain to separate all the strands so tangled up. When I came off the phone I felt calmer.</div><div><br></div><div>He explained that I couldn’t possibly make a decision at the moment as I don’t have all the information needed to make an informed decision. I have very limited options in terms of treatment. </div><div>As I understand it: Due to my transplant, immunotherapy wouldn’t be suitable for me, I have so many other health conditions that I wouldn’t be a suitable candidate for any drug trials either. Radiotherapy I believe isn’t effective with this type of cancer (although it wasn’t discussed fully). Which leaves chemotherapy, the one I used previously, and two others. That’s it. One option would be to take it weekly for 6 months another mentioned being on continuous chemo ie, until it stops working and options run out. </div><div>He also broached the subject that I’d been holding in and too afraid to voice; I am allowed to decide that I don’t want more treatment, whether that’s long term or short term. </div><div><br></div><div>It’s not as simple as I’ve written, I still don’t know statistics for each drug combo. I have to consider side effects like sickness because again it will effect my immunosuppression and not to be crude, dead is dead whether it’s through cancer or rejection. </div><div>During my many conversations surrounding death over the years quality of life over quantity of life has been a big feature. I have always wanted to fight with everything anyone has to keep my life no matter what. That survival drive hasn’t disappeared. I do have a problem though with the many well meaning people telling me I ‘will fight like I always do’. Firstly, why should I have to fight for something that most people take for granted? Second who are you to tell me or expect me to do that? Third, if I stop treatment it is still fighting, just in a different way.</div><div><br></div><div>If I am bald (which I don’t care what anyone else says, would understandably devastate me)in bed, or worse in hospital, head in a bowl unable to focus on even a tv program, is that how I should choose to spend my remaining life? For drugs we don’t even know would work or have a ‘chance’ at working. I would hate my families abiding memory of me to be bald, deathly pale, dying after a long, painful end. Is that fighting?</div><div>Or is choosing the lesser aggressive treatments that may not work so well, but let’s face it who knows with me, but gives me happier days, able to do more than be sick or at the hospital less valid? To still be able to do things I enjoy, to be Tor. That’s what I want, I never want to lose my Tor-ness, my love of musicals, love of family, gratitude to be alive, crap tv, dark humored inherent Tor-ness. Especially not to f*****g cancer.</div><div>Our conversation let me actually consider the option of stopping treatment without me immediately addressing it as ‘giving up’. In fact it isn’t giving up, it’s knowing what kind of life I want and fighting for it in a different kind of way. </div><div>One last thing that a friend and my mum have also said is that, it has to be my decision, and mine alone. I may choose to not discuss it or get everyone’s opinion and take a twitter poll! But when it comes down to it I need it to feel right for me, and only me.</div><div><br></div><div>That’s not to say I’m anywhere near making a decision yet. To make an informed decision you need to be as informed as possible. My first way to do this is to visit my team at Harefield next week to get checked over before things get busier at Marsden and discuss my thoughts with them. Then they can hopefully liaise to make sure current treatment options ar in fact good options and to rule out anything that won’t work from both hospitals points of view. I am also delivering my Christmas treat bags to inpatients on the wards. After that I have a Christmassy city break for a few days which is terrifying but also going to be really amazing. Let’s face it there’s a big chance I might not get much chance for holidays if I start on weekly chemo so I’m making the most of the opportunity.</div><div><br></div><div>After that I have my scan right after new year. Then appointments to discuss what has shown up. That’s the time to ask the right questions, come away and take the necessary time to plan what the best way to fight is. </div><div><br></div><div>Life shouldn’t always be a struggle, it should be finding the value in the life you have. If you can’t do anything you enjoy is that living? Whatever I decide I would like to fulfill some of my dreams and pack in as many lovely experiences as I can.</div><div><br></div><div>To leave you with one thought. I know it isn’t easy mentally or logistically to get help for your mental health but if you are feeling down or alone or lost please please don’t dismiss talking to a professional and get the help if you can. I could see no way it would help, but it really did. Never feel that you don’t deserve that help.</div><div><br></div><div>Xx</div>Torhttp://www.blogger.com/profile/16037224044391745374noreply@blogger.com2tag:blogger.com,1999:blog-178999393048722515.post-86060889506948848772019-11-06T18:40:00.002+00:002019-11-06T18:40:59.373+00:00RelapseAs you may have guessed from my lack of updates things have gotten quite busy in my life. There’s been a lot of health updates but all pretty rapid fire with constant changes so I’ve held off until I’ve had something more definite to report. Also my last post was such a happy joyous one that I didn’t want to post bad news.<br />
To cut a long story short, it looks as though the cancer has come back. God I hate writing that.<br />
<br />
I had my regular scans, there was a lot of toing and froing. My blood tumour markers were very high (should be double digits mine are 4 figures). My lymph nodes around my stomach had also swollen a little. We waited until my next scan in September. I repeated the tests only to find the numbers were a little higher and the lymph nodes more enlarged. So I went for an endoscopy to check we weren’t missing anything. That showed no tumours or issues, biopsies came back clear. I was elated. However, I was called back to the Marsden and it all felt a bit wrong somehow. I saw my consultant and she broke the news that although they couldn’t find any tumours the fact that both the lumph nodes swelling and the bloods being high meant that something was definitely something going on. Unfortunately they think I’ve relapsed. The decision was made that I will most likely be resuming chemotherapy in January. I asked to enjoy a couple of months over Christmas which she was fine with. I will probably be trying a new chemo and I will most likely lose my hair. It will take around 6 months to complete but very much depends on my response and what they decide with fresh scan results etc.<br />
<br />
So still much to be decided and it’s possible they could retry my old chemo it just has to be discussed with up to date information.<br />
<br />
I’m gutted obviously. It’s been a lot to process and I feel mainly numb as though all extraneous movements, thoughts etc have been shut down while all mental energy is focused on understanding what the hell rollercoaster I’ve been on these last couple of months. Literally one Friday I was crying with joy over cleat biopsies and the next walking around dazed to know I’ve relapsed.<br />
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It’s hard to talk about but at the same time I can’t stop talking about it at tunes as it’s like I need to share the burden and get these emotions out of me.<br />
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The positive is that whatever this is appears to be slow growing. I am under the best hospital teams in the world and I am so incredibly grateful and thankful for that. I don’t know if I can get through this again. The hair loss concept has broken me, I have always managed to keep my illness hidden for the most part aside from when I used oxygen. The thought of it changing my appearance so drastically feels like I’m losing a huge part of myself.<br />
I am worried sick about if chemo will effect my transplant or immunosuppressants, what side effects I’ll have and how I’ll cope and obviously if it will work. It’s terrifying. To carry this evil thing inside of me that’s trying to do me harm. Don’t get me wrong I intend to fight as hard as I can but I’m going to need help and support more than ever.<br />
<br />
Already the promises have flooded in, friends, acquaintances, who will be there any time day or night and already someone who promised just that has turned me down twice when I suggested getting a drink. For anyone who has a friend in a situation such as mine please don’t promise more than you can keep. It makes us feel utterly alone again and it effects our ability to fight.<br />
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Anyway I hate making this update but I wanted you to know. I’m intending to enjoy Christmas and it’s lead up as much as I possibly can before the hard work starts. I’ll be doing my hospital goodie bags too , it’s really important to me and so good to be able to brighten someone else’s dark days.<br />
XxTorhttp://www.blogger.com/profile/16037224044391745374noreply@blogger.com0tag:blogger.com,1999:blog-178999393048722515.post-10118018744975698582019-09-01T22:08:00.001+01:002019-09-02T08:51:04.644+01:00Up on the RoofI did it! <div><br></div><div><br></div><div>After a few days getting decidedly nervous on Wednesday 28th my parents and I headed up to London for my O2 arena climb. I was really worried, people had shown such faith in me, I’d collected more money for my charities than I could have imagined, and while I knew everyone would understand if I couldn’t finish the climb I also knew I would be gutted and feel like I’d let everyone down.</div><div><br></div><div>We drove up, it would have been ridiculous to think I could get there and back by public transport. Instructions were to get to the Up at the O2 area 15 minutes before climb time which was 12.15. I had some time and hadn’t visited the O2 since it was the Millenium Dome many years ago! It was cool to remember bits and see how it had changed. We didn’t go far round it but soon it was time to climb.</div><div><img id="id_ebef_b52f_7d9_46f5" src="https://lh5.googleusercontent.com/5R3zYmBG-hPbOCWtsCajZmYxH88lhxvECueMSmiPz-3buMWiH1a_34CcOG0" alt="" title="" tooltip="" style="width: 746px; height: auto;"><br><br>So I’ll be honest, looking at the climbing walkway from the ground I felt an anti climax. It wasn’t very far and I felt a bit of a fraud. There were two walkways and then that was it...... that wasn’t it!</div><div>I went in and joined my group, we filled in a form and watched a video about the building and the safety procedures. Our guide was Jack who was lovely, and he showed us how to put on our harness and what we could take with us. Then we went through to the next room. Each of us were given a harness, a pair of trainers (soooo comfortable) and if you wanted you could wear a thin gilet that had a pocket to keep your phone in. There was a fairly large zipped pocket so I was able to keep my diabetic supplies on me which was reassuring. I was first one ready (fear spurred me on!) and soon we were ready. We started by having another check of our harness then we walked up a few flights of stairs onto a platform. </div><div><br></div><div><img id="id_cf2f_9ac8_4ed9_a7fe" src="https://lh4.googleusercontent.com/9gc2W28nY24uKPAcSGrei5UQy0562ES_YXFs_Z5IXE600l7L1DqNq-TdHGo" alt="" title="" tooltip="" style="width: 746px; height: auto;"><br><br><img id="id_6d5c_d408_d5d7_95" src="https://lh5.googleusercontent.com/fO9YAkgcDYjymTMbxj660AFSC-uo6lyaJ1KzntNDTf6FR-XQtUdMcE_Zfv4" alt="" title="" tooltip="" style="width: 746px; height: auto;"><br><br><img id="id_8675_1dbe_d1a1_1864" src="https://lh5.googleusercontent.com/iiXA-t7Bq20ZdlX0L_D_qTn9h6hYRuXfVVhFCkib7A3NUfKbQ2MUsc94moQ" alt="" title="" tooltip="" style="width: 746px; height: auto;"><br><br><br><br></div><div>We had a short lead that attached to a wire up the walkway. The lead locks onto it, and to walk you have to push up on the mechanism as soon as you let go you stop which was reassuring! Then up we went. Up the two walkways.... then another two.....then I believe another three 😳 Not as short as I thought!! </div><div>It was hard going for me especially to start with. I was very lucky as the previous day was ridiculously hot, and I could never have managed to do it then. Thankfully, Wednesday was cooler but still sunny. The incline is quite steep 30degrees in places, and it was good that it was a slow climb. Contrary to what people might think, I often find slower and standing still more difficult, I’m more likely to rush through things then collapse into a heap at the end. Being forced to go slow made me adjust and think about taking deep breaths and pacing. Let’s say by the time I got to the top I was elated! Slightly dizzy and exhausted but pure joy radiating from me as you can see in the photos! </div><div><br></div><div><img id="id_b2e6_c49b_d8e6_8e64" src="https://lh6.googleusercontent.com/8oZReLR3YK_xad4IO_glnEy7mfAGdOO5kJzuyKYFVp7CU7HV83PR7R2DbaQ" alt="" title="" tooltip="" style="width: 746px; height: auto;"><br><br><br></div><div><br></div><div><img id="id_5af6_55d6_90f8_cd1f" src="https://lh4.googleusercontent.com/DHSQBkWB-BB5LcTtY-bYaVZq8vXdSzbcr7F_Ffb_NWsf6JFteCDX1QJcgIk" alt="" title="" tooltip="" style="width: 746px; height: auto;"><br><br><br></div><div><img id="id_983d_346c_8064_24b3" src="https://lh3.googleusercontent.com/vf9cf_1O-xSqEeS1tIrDB0VoiJ9xyQ7sODN6lpRmlt_l4h5-Z_Wi2rBqg9s" alt="" title="" tooltip="" style="width: 746px; height: auto;"><br><br><br></div><div><img id="id_e619_6fc6_107e_3ec7" src="https://lh5.googleusercontent.com/cM693eHOYSpDslEiCJ8LZZK1UHbBmoNRXP1zu9C_gXz_Xtx-BNpkBPWA46s" alt="" title="" tooltip="" style="width: 746px; height: auto;"><br><br><br></div><div><br></div><div>The views were amazing. It was lovely as I was the only lone climber and a couple of the group came up to me and asked if I wanted them to take a couple of photos which was so kind. It was a really emotional climb for me and I found myself thinking of all the friends who were not around anymore to feel the joy I was feeling and the sun warming my face. My donor too was obviously at the forefront of my mind and I sent up a silent thank you to him. I stood and took a moment to think of them all and appreciate how lucky I am to be alive against ridiculous odds. </div><div><br></div><div><img id="id_7435_d36b_ab2e_8617" src="https://lh3.googleusercontent.com/xG9ZKxVvdLP9WpYKGOmoqmYOfVmpBKLJuIyBXr4QH63_-EZG055HQVLSVKc" alt="" title="" tooltip="" style="width: 746px; height: auto;"><br><br><img id="id_aa9b_89c4_5f14_9ecf" src="https://lh6.googleusercontent.com/VAMOYYClHRzYBAuRfRNDW03CgQdcGojQAFLncCoOMdY3ZgliJxeD6d08oQE" alt="" title="" tooltip="" style="width: 746px; height: auto;"><br><br><img id="id_e286_ae63_7248_9ece" src="https://lh4.googleusercontent.com/eDbtDNh5o4z2EAwlvvHxWFMew7pki6ezwNweFWAuohkGddVeZJeLAcB8lKE" alt="" title="" tooltip="" style="width: 746px; height: auto;"><br><br><br></div><div><br></div><div>We had some time to take some selfies and capture the views and then it was time to descend! </div><div><br></div><div><br></div><div><img id="id_d4b9_8900_d4c0_226d" src="https://lh4.googleusercontent.com/2p-M67XZZ7gD84NblvSwoHyw5FVnj0B42NCW_KoRaUYcDJk_zj127Dp8UQg" alt="" title="" tooltip="" style="width: 746px; height: auto;"><br><br><br></div><div>The climb down was really hard! It was very steep so I had to lean back a lot to counterbalance. It felt as though you could literally slip and take out everyone on the way down. Descent was much faster and suddenly it was over! As soon as I came off my arms and legs felt like jelly. I was very shaky but hyped up on adrenaline. We went and got changed, returned our borrowed kit and left via the gift shop. </div><div>I’m a sucker for a souvenir and my parents had basically followed me over the roof on the ground! They had bought one of the official photos and a medal which I was more excited about than I had any right to be! Souvenirs weren’t too expensive which was good and the climb itself was £30 which I thought was really good. The climb lasted 90 minutes in all.</div><div><br></div><div><img id="id_88d4_db3e_6d99_1fe6" src="https://lh3.googleusercontent.com/gRWBN9hXb5GLa6mP1VHRfnOkpTUkrQzkELzQ4-NhCO-C5BiSruSIBmbN2M4" alt="" title="" tooltip="" style="width: 746px; height: auto;"><br><br><br></div><div>I was tired and we had taken my wheelchair in case but I walked slowly to help ease my muscles down a bit. I was t hungry but we stopped at Las Iguanas and what we had was delicious! They had great gluten free options and veggie options for my dad. We all got some tapas dishes and sides. I was hungrier than I realized and it really hit the spot. We drove home and I slept in the car! </div><div><br></div><div><img id="id_d5ef_6d4e_e666_78ff" src="https://lh4.googleusercontent.com/0q-DTEXzpPJSj1liv6mR5g8smmaauIQOL2fqXyS3OlUrXuzHFFAJrk4oGHE" alt="" title="" tooltip="" style="width: 746px; height: auto;"><br><br><br></div><div><br></div><div>Unsurprisingly I am paying for my little adventure, but sometimes you have to pay the price for it. I’ve been exhausted and also struggling to sleep despite being fit to drop. I’ve had pain too but had booked a massage in advance so that helped tremendously. Annoyingly it’s not been a hideous unable to do anything but over quickly flare, but one were I feel ok, do something then a few hours after am trembling and feeling awful. Nothing constructive to say but hell it was worth it. </div><div><br></div><div>I wanted to take a minute to say a huge thank you to every one who has supported me a long the way. It’s been an amazing experience and made me proud of my little body. I’ve had such lovely messages, some have brought me to tears. Also my fundraising page has achieved more than I could ever imagine, at the moment the total stands at over £1200 and still getting a couple of donations in. My target I think was £150. As usual you guys astound me with your kindness. Without Harefield hospital and The Royal Marsden I would be dead by now, no doubt about it.i see first hand the incredible work they do and I am so unbelievably happy to have been able to give back to them and say a thank you.</div><div><br></div><div>My donation page will officially close a week from now so<a href="https://uk.virginmoneygiving.com/fundraiser-display/showROFundraiserPage?pageId=1089085" id="id_2817_26a_bc16_bcd2"> if you would like to add to the pot you still can</a>! </div><div><br></div><div>I have no idea what the future holds or if I will get the chance to push myself like this again but I hope I do! Any suggestions for future challenges gladly received! </div><div><br></div><div>In the meantime, thank you so much you have warmed my heart. ❤️</div><div><br></div>Torhttp://www.blogger.com/profile/16037224044391745374noreply@blogger.com0tag:blogger.com,1999:blog-178999393048722515.post-2467009856520623552019-08-27T16:15:00.001+01:002019-08-27T16:15:00.398+01:00Happy daysI wanted to post about some happier days I’ve had recently. It’s been lovely to have a bit of proper happiness in my life again and combined with a few days of decent health worked out to give me a lift. Firstly I should point out that by ‘happiness and decent health’ that doesn’t mean I was ithout anxiety, depression or my usual health issues but more that they were controlled for a time or were able to be helped. Not to bring a downer but it’s important for me to recognize that chronic illness is just that. There are better days and worse days but never a ‘normal’ day if you want to call it that.<div><br></div><div>Anyway onto the good stuff! I had planned a day in London with a friend of mine, she has health issues too so it’s easier to work out a not too knackering day. We were meeting outside the <a href="https://www.vam.ac.uk/exhibitions/mary-quant" id="id_2b08_6999_278_2135">V&Amuseum to visit the Mary Quant exhibit</a> I had a bad start where I got a bit lost between stations. It was proper panic, I felt vulnerable everywhere was shut and the buildings high so I couldn’t really aim for any direction. I’ll admit that I got into a really bad place mentally and it’s a wonder I didn’t come home or more likely just disappear off somewhere, but I’m so glad I didn’t and overcame the way I was feeling even though it was awful. I had a bit of time to chill before we met and went into the exhibit. We had a walk round and took some photos. I’ll admit I’m not really a museum person or art galleries for that matter but I did appreciate this. Short enough not to be too taxing, the way the outfits and information was displayed was done really well and it was so interesting to see how Quant’s ideas are still so relevant today.</div><div><br></div><div><img id="id_f768_2f3d_ed3c_89a4" src="https://lh6.googleusercontent.com/JBk2rdkEoCukjUzDcYX2mAZLsXinwqhbBWiOXOJeTFSZlQJiJBWCpkPgqiY" alt="" title="" tooltip="" style="width: 746px; height: auto;"><br><br><img id="id_10a8_10fe_1ecf_c5d2" src="https://lh6.googleusercontent.com/HaE39IIHRwt8OV76YybjzJvORyq26AWRs_MuMFgW6woU_P1ahY-QXCtghX8" alt="" title="" tooltip="" style="width: 746px; height: auto;"><br><br><br>We had an afternoon tea booked for 3pm but managed a quick trip to see the science museums space exhibit next door. It was interesting but crowded and very hot! We looked round but didn’t stay long. Opposite the V&A there was a little patch of grass that we sat and had a chat/rest. We spied a phone box and decided to get some cheesy Instagram photos which was fun! I’d like to say that there were a bloody lot of spiders webs in that phone box! Hands throughly disinfected afterwards! </div><div><br></div><div><br><img id="id_3848_93f1_bebf_32bf" src="https://lh6.googleusercontent.com/p3xuuGbHRswlXlZLFJwqRRR4-Br69Yl7k3Lx5t0q8fa773SEee6R4I5XnPo" alt="" title="" tooltip="" style="width: 639px; height: auto;"><br><br>Then we had time for a leisurely walk down to<a href="https://ampersandhotel.com/eat-drink/the-drawing-rooms/science-afternoon-tea/" id="id_f21e_8c3e_920f_1d39"> The Ampersand for their science afternoon tea</a>. They had a beautiful flower arch as you walked in and then the room was sort of divided into two smaller rooms. On one side they had families with children and on the other just adults which was nice. I’d booked because the theme of the tea had really been used to full effect and the had the whole thing available in gluten free and vegan. Actually, item for item rather than I get something and my friend gets something amazingly better which is what often happens. It makes such a difference to get the same as everyone else (which I should because I’ve paid the same). </div><div><br></div><div><img id="id_e4c7_c218_397_f125" src="https://lh6.googleusercontent.com/dVc4np5fAE7KsR8Y6LNeU6ojnxyOpNs9L6UQT2RJonnZNKcU_m0yQOXrlyQ" alt="" title="" tooltip="" style="width: 385px; height: auto; margin-left: auto; margin-right: auto; display: block;"><br><img id="id_a293_ee3f_efdb_7651" src="https://lh6.googleusercontent.com/58Zeas4Jz8MLCU9RTYaoGprNw1HhN3OMuvAaKGCBihXDaq7Xdd2JDO2Uf30" alt="" title="" tooltip="" style="width: 746px; height: auto;"><br><br><br><br>Our first item was to pick a tea (coffee and hot chocolate were alternatives) and on the table were 3 test tubes filled with freeze dried raspberry and pineapple pieces and salted caramel balls, these could be added to any of the puddings or scones. Next they brought over the ‘experiment! A kidney dish, beakers, pippettes, syringe, and more that you used to create a small drink! Very nice touch and got you right into the spirit. </div><div><br></div><div><img id="id_7cc5_bf2b_6c91_7fc1" src="https://lh5.googleusercontent.com/fHX04LihJBwFCu02MVXUr08HDrpqwQG5FEANLNEjmfDuBDJSdONiNj3NFkg" alt="" title="" tooltip="" style="width: 746px; height: auto;"><br><br><br></div><div><br></div><div>Then for the tea! It was amazing. A tea stand with sandwiches and a vegetable tart on the bottom tier, second tier with a plain scone and a cranberry/white chocolate scone with jam, cream, and lemon curd in a tube which felt bizarre to squeeze onto my food! Then the top tier. There was a planet with chocolate mouse and passionfuit gel (my favourite) this came on dry ice which they poured water onto so it smoked for a good 5 minutes! I loved the spectacle and drama of it! There was a coconut cake with a little green spaceman, a galaxy macaron with a pipette which was delicious but turned your tongue blue, and a fruit jelly in a Petri dish which I’ll be honest grossed me out! </div><div><img id="id_9e19_ff46_42a5_fecc" src="https://lh5.googleusercontent.com/szsblm9vTRYVUKtWr0KQ4SMP8uYLuKvZ3ZhVJ90SVTdGW3e3ttcR8FPLZRk" alt="" title="" tooltip="" style="width: 746px; height: auto;"><br><br><br></div><div><img id="id_726d_b288_23ad_ed5" src="https://lh3.googleusercontent.com/CgAErfsgpbi_AY2I83G2kzJq5WWu9QvjXry81aGGNH0s9puu5KUnXUXGivk" alt="" title="" tooltip="" style="width: 746px; height: auto;"><br><br><img id="id_9ebd_dbe0_3de7_7eb" src="https://lh3.googleusercontent.com/Trj9eCG7ZUYcDsnjjZuGplQuOI6qwkVsc6hzpkNfqeojAEZY3L5LJFqdL-o" alt="" title="" tooltip="" style="width: 746px; height: auto;"><br><br><br></div><div><br></div><div>We also had a little wooden box with a paintbrush. Inside it was edible dirt that we brushed to find our ‘fossil’ a tiny chocolate dinosaur truffle. </div><div>The food was great and we were both full up. They were bring refills for other tables (sadly we weren’t asked) and they also give doggy bags if you want to take some home. </div><div>The price was at the higher end but The Ampersand had really gone the extra mile to create something fun that wasn’t just a tea but an experience. The staff were lovely too. Definitely recommend. </div><div><br></div><div><img id="id_7d8e_cf36_28b4_3ec7" src="https://lh5.googleusercontent.com/U1vf0n_IHXv5uPTEFoFEbFvqkZWkMLMf2JfS5xuqrJrGVe0KzSYHY25m3Wc" alt="" title="" tooltip="" style="width: 746px; height: auto;"><br><br><br></div><div><br></div><div>We even managed to grab a quick drink around the corner at <a href="https://townhousekensington.com/k-bar/" id="id_f4bb_a9e5_d735_82c1">The Townhouse Kensington</a> Such a beautiful and welcoming place, cocktails were delicious and I really want to go back there to explore and eat! </div><div><img id="id_f0d9_1c64_d58b_b443" src="https://lh5.googleusercontent.com/B2LPZ8cWwXTAl5My3yqhHDcAvVMyl6IBMzwgdEKumghI1wjJUswVaLBXGNs" alt="" title="" tooltip="" style="width: 746px; height: auto;"><br><br><br><img id="id_6a6e_3d87_e4a5_61f0" src="https://lh5.googleusercontent.com/r0RMc0HwPT3HKhQoYqUkhP3tLMM3JO4sGZ08MCfHVQOzXPj05SWadhDrrAI" alt="" title="" tooltip="" style="width: 746px; height: auto;"><br><br><br></div><div>A brilliant end to a day that started badly. The fact that we stayed in such a small radius as well meant that we managed to do more than expected.</div><div><br></div><div>I was also able to spend time with my niece and one of my nephews later in the week. I always feel bad as all of them live far enough away that I can’t just get on the bus to see them and often days out get rescheduled when I’m not doing well. I rested all morning and took my niece to a pottery painting place which we both enjoyed! Then we met nanny and went to a small park nearby so she could play and we all had an ice cream. </div><div><img id="id_1efe_d8a7_b781_a144" src="https://lh3.googleusercontent.com/lr_WX-fglMNPIcGcRrQP7S7HuySVSAO_Ry73RN-ExZQ4rGvwDeNn503z-Vc" alt="" title="" tooltip="" style="width: 746px; height: auto;"><br><br><br></div><div><br></div><div>On the Thursday my sister invited me to go crabbing with her, my bro in law and my nephew. Usually my instinct would say no, it was hot and could I manage etc but for some reason I opened myself up a bit and said yes. Another glad I did! I loved crabbing! We had a lovely day in the sunshine but with gorgeous breezes from the water. A yummy pub lunch and a ride on a boat. I was so tired I fell asleep on the way home and made use of my liquid morphine but totally worth it in cost and worth as discussed before.</div><div><br></div><div><img id="id_3ffa_a28a_cbf1_aef3" src="https://lh6.googleusercontent.com/BTsiawFK2K7FPGzScC1VVVihRs_lxOrYHl3EPGqx3FQH5AsEseLP6a_kkrY" alt="" title="" tooltip="" style="width: 385px; height: auto; margin: 4px;"></div><div><span style="-webkit-tap-highlight-color: rgba(0, 0, 0, 0);"><br></span></div><div><img id="id_a82a_991d_de05_dd54" src="https://lh3.googleusercontent.com/KPvsOoXkRcEM6So66UCP6lR0oet1XylX3pNwZksXJ315n7A2ZgUEo6jbw_g" alt="" title="" tooltip="" style="width: 385px; height: auto; margin-left: auto; margin-right: auto; display: block;"><br><img id="id_da4_9411_8126_d26e" src="https://lh3.googleusercontent.com/rQScsolPgYmJuKRP8FyO7fGxh505cVRcwZ1pDQ-e265LUXC8kUhsq_0ij18" alt="" title="" tooltip="" style="width: 746px; height: auto;"><br><br><br>Tomorrow is the big day, <a href="https://uk.virginmoneygiving.com/fundraiser-display/showROFundraiserPage?userUrl=TorTremlett&pageUrl=3" id="id_5506_de20_4427_16fd">I’m <font size="4">climbing</font> the O2!</a> Why did I sign up for this?! I’m really scared but I’ve had so much support and raised money for my two amazing charities, I want to do everyone proud. It will be tough, so tough but I will give it my best shot. I’ve been resting for days to gather energy I just hope it’s enough. </div><div><br></div><div>Anyway if this proves anything it’s that life is not perfect. It’s not perfect for majority of the time. My depression could flare the second I press publish or might stay away for longer. I might fail miserably tomorrow or I might get bad news at the next round of tests. The whole point of living is to live. To change your mindset a little and challenge yourself now and then, enjoy the bits you can and the people you love who really were the reason I was happy. Also it’s made one of the biggest changes to me, to feel valued. To be asked to do something, to know people want to spend time with you. If you can do that for someone else please do it can change their world.</div><div><br></div><div>Please think of me tomorrow I’ll be needing all the positive thoughts to get me up that O2, it’s higher than I bloody thought! </div><br>Torhttp://www.blogger.com/profile/16037224044391745374noreply@blogger.com0tag:blogger.com,1999:blog-178999393048722515.post-80985163596811652442019-08-11T19:11:00.001+01:002019-08-11T19:17:32.843+01:00Cost, worth and climbing?! <div><br></div><div><img id="id_b18b_6600_c3f9_674d" src="https://lh3.googleusercontent.com/0u1BF1RZVm6sDiVkuLitxtk1BAJHywjvGkq3yWsAGBGSpVQAUE4fx2_P6-M" alt="" title="" tooltip="" style="width: 746px; height: auto;"><br><br><br></div>So I thought my last post was the end of that chapter but sadly it wasn’t. I’ll sum it up as quickly as possible but if you <a href="https://tor-pastthepointofnoreturn.blogspot.com/2019/06/the-long-explanation.html" id="id_4fa_43e6_29d3_becd">read my last post</a> you’ll know that I ended in a pretty bad headspace, was at the end of cancer checks without specific ‘clear results’ but without having actually found a definite tumour or problem either. I was having a final CT scan purely to check on a piece of bowel. However after having many reassurances that the scan was fine, it turned out that unfortunately the lymph nodes in my stomach (where my original tumour was) have enlarged since the previous scan. It could be a sign of relapse and the whole team had a multi disciplinary meeting to discus if chemo would need to be restarted. It was decided that there wasn’t enough evidence to declare it a relapse but that I would be checked again in September, a watch and wait to see if there’s a change, eg visible tumour, lymph nodes getting bigger or shrinking, blood markers elevating further.<div><br></div><div>In all honesty it’s been difficult but I did really need a few weeks break. The constant uncertainty and fear, as well as the physical toll of the frequent visits to the hospital meant that physically and mentally I couldn’t sustain it. I had an appointment at Harefield and my consultant of 8 years was really concerned for both mum and myself saying she’d never seen us look so broken. I’ve been having sessions with my psychologist who had encouraged me to let the hospitals know how I was feeling and to fight for a bit more support. I wrote a letter to my consultants requesting that appointments be justified and if there was any potential for phone consultations in between necessary visits which made a tangible difference and also gave me a feeling of power when I felt I’d lost any say in my own life. My Transplant consultant adjusted my anti depressants, scheduled more frequent psych sessions for me (on the phone) and was genuinely caring and compassionate. Just knowing that everything I felt was valid made a huge difference. </div><div><br></div><div> So I’ve had a few weeks with more support and less hospitals. I am still in a bit of a mess but getting there. I’ve been having bouts of bad stomach pain, general pain, upset stomachs and fatigue which as you can imagine doesn’t do a lot for feeling like you’re having a medical break or a great atmosphere for healing. I’ve made some difficult decisions that were for the best even if they weren’t what I wanted. I have stepped down from my post as a tissue donation ambassador, which I was sad to leave but weren’t able to give it my attention and energy that I wanted. I also decided I couldn’t attend my best friends wedding to be her bridesmaid. She was absolutely amazing about it but I was so gutted. The wedding was in Scotland and what with the travel there and back, the all day activity of the wedding day and the fact that I would be suffering a lot from the exertion and mum would be left to sort me out in a foreign city, it was just impossible.</div><div><br></div><div>It is still incredibly hard, one day last week I had such a happy day a few days later I couldn’t stop crying and was so desperately unhappy that I couldn’t bear waking up to feel the same way the next day. I am trying though. Despite the wedding and ambassador roles having to be given up, I knew it was for the first time, me thinking what was best for me rather than pushing through and not enjoying it plus being even iller for an indeterminate time. Cost and worth is something that I’m having to consider more and more but I feel I am making some progress however hard and slow. </div><div><br></div><div><img id="id_7cbe_fc45_6375_44cf" src="https://lh3.googleusercontent.com/G3r-IMhYSJd1uix_puAbVK1pRPIgN1cBZbJ0WKrPrSnYLFqcgcHsRxMB71Q" alt="" title="" tooltip="" style="width: 746px; height: auto;"><br><br><br></div><div>I’m also trying to do more things that make me happy. It’s hard to remember sometimes for me and health professionals that life and living are different things. Living is being psychically alive, but living is experiencing life in a way that makes you happy and meaningful. It can’t be all one or the other. I’ve been able to take on some cake orders which while it isn’t my dream job, is nice to feel purposeful and be creative. I’m working to declutter and make my environment nicer to be in, and I have had a few days out or with friends, carefully planned where I feel for want of a better phrase ‘like a real boy’ ( Disney’s Pinocchio was a family favourite and we used to joke that one day I’d be a real boy, obviously girl but you know what I mean! Where I’d go out and live and eat properly and not be constantly sick).</div><div><br></div><div><img id="id_7b20_a6a3_79be_4328" src="https://lh5.googleusercontent.com/sVilNe2IZAQ5PkX1b7vg3AWR61loMNvBMpUWjcfGjU3Ah3_mbvZT8C4hACM" alt="" title="" tooltip="" style="width: 653px; height: auto;"><br><br><br></div><div><br></div><div><br></div><div>I have also done something a bit stupid or brave or potentially both! Again, judging on what I thought would be an accomplishment without being absolutely killer, I am booked to climb the O2 arena. I went past it on the train yesterday and it’s bigger than I remember..... It will be a huge challenge and the payback will be a bitch BUT cost and worth. I want to feel like I’m doing something meaningful and short term this is. I already have a massage booked for the following day! </div><div>I have set up a fundraising page. I have had so much support in the past that I genuinely don’t want people to feel pressure to donate, I’ve made it for those who can and however small or big the donation it will help two amazing charities, Harefield Hospital and The Royal Marsden Cancer Charity, fittingly the people who allowed me to still be here to attempt this. Thank you to anyone able to donate. <a href="https://uk.virginmoneygiving.com/fundraiser-display/showROFundraiserPage?userUrl=TorTremlett&pageUrl=3">https://uk.virginmoneygiving.com/fundraiser-display/showROFundraiserPage?userUrl=TorTremlett&pageUrl=3</a></div><div><br></div><div>I’m hoping to write some more blogs, hopefully a little more generally topic wise, chronic illness and the ways it effects me but also others. If there’s anything you’d like to know about please let me know. I’ll also be updating you on the success of not of the climb. I’ll be honest I’m only doing it for the photo at the top! </div><div><br></div><div><br></div>Torhttp://www.blogger.com/profile/16037224044391745374noreply@blogger.com0tag:blogger.com,1999:blog-178999393048722515.post-57473359404775876602019-06-20T18:07:00.001+01:002019-06-20T18:10:38.317+01:00The long explanationVery long, emotional and overdue blog post coming up so settle in, grab some tea and maybe some snacks.<div><br></div><div>To give you an overview of the last couple of months. End of April I had my regular 3 monthly cancer check up. As part of my blood results I have tumour markers which are specific to my stomach/bowel. There are many tumour markers that check for other cancers in other parts of the body too. Anyway, these came back high and rising which obviously rang alarm bells. I’d already had a CT scan, so the next step was a PET scan <a href="https://tor-pastthepointofnoreturn.blogspot.com/2019/04/pet-scan.html" id="id_d240_e4e5_d0b9_5c7d">explained in detail here</a> My PET scan showed two ‘hot spots’ one in my stomach and one in my bowel basically indicating something being awry without being definitive. Next I had a MRI scan on my stomach and bowel (slightly different to a standard MRI) that shows a 3D image of your insides. One of the hotspots was dismissed as being ok but my bowel looked as though it had a polyp. I was told it didn’t look worrying but no one could be sure until it was looked at and biopsied. So I was booked in for a colonoscopy and an endoscopy (I was due one in August so we moved that forward). As long term readers will know a CF patient having a colonoscopy is not the same as a regular colonoscopy. I had to have a low fibre diet for a week followed by a liquid only diet for 3 and a half days while drinking 3 liters of laxatives each of those days. It was exhausting.</div><div><br></div><div>I had the endoscopy which was fine. The colonoscopy however didn’t show a polyp but did show a problem in a portion of my bowel. It’s technical name is an intususection or ‘telescoping’ of the bowel. This is not my area of expertise but this is how I understand it. Imagine a telescope, how one piece fits into the other, that’s what’s happening in my bowel it rubs together and can be caused by a few things as well as having the potential to do some damage. I could actually see it on the screen while having the procedure, the bit I could see was ischemic, or had suffered a cut off of its blood supply. Even I could clearly see it was stark white compared to the pale pink healthy bowel around it. The dr took biopsies and reported that everything else looked fine. </div><div><br></div><div>Last Friday I found out that the biopsies were all clear of cancer. So why had certain things shown up? </div><div>The answer is we don’t know. </div><div><br></div><div>Now I am obviously very happy there’s no obvious cancer. I am also extremely complex, unique and medically have a lot going on so we aren’t exactly sure why things are showing up. I’m also extremely frustrated, it’s not a clear cut no cancer. It’s very open still as to not knowing exactly what’s happening but having ruled out as much as it’s possible to. To be honest it feels like there isn’t any cancer showing up.....yet. It’s been enforced even more emphatically that the 3 monthly tests are the way to go forward especially as I am high risk of reoccurrence.</div><div><br></div><div>I have very little idea about the intususection. Don’t google it is all I can say! It may need treatment it may not. I will however need another CT scan which I’m scheduled for tomorrow. </div><div><br></div><div>I haven’t been coping well. Writing this down is the basic bones, it’s not the lengthy waiting for tests or results, it’s not being exhausted from the extra hospital visits. It’s not all the clinics and dreading my phone ringing. It’s not making plans that need to be cancelled and it’s not the feeling of everything feeling unfinished and like I can’t make plans just in case. I was told last week that the next cancer stuff would be in September. I booked a theatre ticket for this Saturday. Yesterday I was given a CT appointment for Friday, silly as it seems having a chronic illness and plans changing like that really messes life up. I plan each week carefully according to how I am and space out activities to give myself the best chance to be able to do them and not feel awful or have to cancel. </div><div>About ten minutes after the scan booking I had another phone call about a hepatology appointment that I’ve been on a waiting list for (so long I’d forgotten it) to book me in for next Wednesday, I declined. I have a counsellor appointment on Monday and Harefield for a clinic I’ve had to move twice already, on July 1st. Also at least another appointment to get the results of the bowel CT.</div><div><br></div><div>It has overwhelmed me. I’m fully aware that some people live their lives with more hospital visits than this, and that I am very lucky, but at the moment I can’t cope.</div><div>I feel as though all the things that made me me, have disappeared. I’m confused, constantly frightened, depressed, anxious and exhausted. I don’t feel I’m recovering mentally or physically between disasters or tests. I’m bursting into tears often and more than once I’ve cried for hours unable to stop.</div><div>I’ve cut right back on my cake work. I’ve also been thinking how impossible it would be to work anywhere at the moment, constantly having appointments and a decline in my health means there’s no way any company could accommodate me. I’ve missed so many activities this year including things I’ve paid for and lost the deposit, around £150 so far, it feels easier not to bother. The things I have managed to get to I’ve often rearranged at least once. People see photos of me doing something on social media and quite rightly assume I’ve gone out and had a lovely time. But I don’t take pictures of the desperation to sit down, the evenings stuck in the loo with violent stomach cramps, the days after not being able to do anything or the syringes of oxycodone to help my pain. They don’t know the anxiety and planning that’s gone into getting me there.</div><div>Ironic as this sounds, I am aware that this is a ‘good’ time for me. I’m not in rejection, I have no obvious cancer; I should be going and doing all I possibly can while I’m able to. Except I’m not able to.</div><div>I feel so far removed from everyone else I’ve pretty much stopped talking to any one. I have also been hurt by the friends who have completely disappeared except for the odd comment on Facebook saying they will always be there for me. Someone said to me (not in any accusatory way) that they hear how bad I am but then I’ll put a photo of a cake I’ve made and they’ll be amazed... it made me feel quite guilty. The fact is I constantly worry people think I’m over exaggerating my illness when if anything the opposite is true. Anything I do is planned so carefully. My parents ferry me around, cook, clean and help me in many ways majority of the time. This is so my energy can be reserved for things I need or want to do. Cake decorations are often made long in advance and I will nigh on kill myself to complete an order if I say I will, I’m that kind of person. It’s not a criticism of anyone but it all adds to the feelings of depression and inadequacy.</div><div><br></div><div>Dating, having my own home, my own family, feeling well enough to travel, having a career not just a job, have all been shelved. As has really making a go of something with full force rather than hanging back because I’m not well or ‘hospitals and health’ come first. It’s like I’ve whittled down all the things that were important to me to lesser and lesser ideas and even those feel impossible right now. My sole reason of existence is to fulfill my illness requirements and that is such a horrible waste.</div><div>I look to the future and just can’t face it. What if in September this whole cycle starts again? Another nearly 3 months of hell having tests and worrying sick. Aside from feeling awful and having just been pushed too far. Everything is a struggle. The lines of relative normality that I cling to have shifted and I can’t hold on anymore. I feel worthless and find it so difficult to relate to others, I have no idea why anyone would want to spend time with me right now. I certainly don’t.</div><div><br></div><div>I’m craving something good to happen. Genuinely to realise there are things worth trying for but even then it just feels exhausting to consider. I dream of checking into a gorgeously plush hotel to recover but I realise I won’t recover, health may change but it’s not likely to dramatically improve. </div><div><br></div><div>In short I’m lost. I’m not saying I’m sucidal or there’s nothing to go on for. I’m saying I honestly do not know how to go forward anymore. More than anything in the world I want to start feeling better, to recover my identity again and find a way where life isn’t a struggle but the joy I know it can be.</div><div><br></div><div>Xxx</div>Torhttp://www.blogger.com/profile/16037224044391745374noreply@blogger.com0tag:blogger.com,1999:blog-178999393048722515.post-6861542514468492732019-06-06T18:21:00.001+01:002019-06-06T18:21:37.030+01:00We might win an award! Hello, <div><br></div><div>Apologies for shocking lack of blog action. My next blog will be a sum up of what’s been happening but in a sentence, chronic chronic fatigue, every conceivable scan, hospital visits, fasting, scopes and waiting about sums it up. I want to start regular blogging so much and I have so many ideas for posts it’s just waiting for life to get a bit less scary and stressful which I’m hoping it should be very soon. </div><div><br></div><div>Anyway, this wasn’t what I wanted to write first in the list of posts I have waiting to be written but it is time sensitive so it got priority.</div><div><br></div><div>I love this blog. Even if I don’t get to write as often as I’d like, I think about it and ideas etc a LOT of the time. I enjoy writing, sharing, connecting with my readers and I find it immensely cathartic. I’m very proud of my little blog and I have big hopes for it going forward,</div><div><br></div><div>That is why I am very honoured that it has been nominated and shortlisted for a health award! We are in the Best chronic Illness and Recovery category (yes we are best at having chronic illness 😂). It means so much to me to be nominated and even more shortlisted. You can vote for Past the Point of No return or in any of the categories by clicking this link. One vote per person (however many categories you want but only once if that makes sense) and voting ends June 24th. I wanted to post here about it to say a huge thank you to everyone who nominated and most of all anyone who has read once or on every single post. I’m not going to be super gooey but know that your support and love mean a real lot to me.</div><div><br></div><div>Anyway, if you would like to vote please do and thank you!i genuinely don’t think we’ll win (votes are only 30% of the decision) but let’s give it a good shot! <a href="https://fab1.typeform.com/to/hYlOD1">https://fab1.typeform.com/to/hYlOD1</a></div><div><br></div><div>New post coming very soon hopefully by the weekend xxx</div><div><br></div><div>PS I’m not being weird referring to ‘us’ and ‘we’ but I feel like my readers are part of the blog! I mean without you it might as well be me writing in a locked diary?! </div>Torhttp://www.blogger.com/profile/16037224044391745374noreply@blogger.com1