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.

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. 

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.

Unless I get sucked into online shopping and then have to literally squish things into drawers and cupboards.

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.

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.

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.

That said I have set up a page and if you would like to look, here it is. https://uk.virginmoneygiving.com/fundraiser-portal/fundraiserPage?pageId=1166179

Each charity will get a percentage amount

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.

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.

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.

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.

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! 

Love to all, stay safe! 

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.

Eating is difficult drinking bloody impossible as extras just add to the extra weight/heaviness on my chest.

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.

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.

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.

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! 

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.

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.

So yes, cancer has got me completely on my arse right now. But it won’t be for long.

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.

Eating is difficult drinking bloody impossible as extras just add to the extra weight/heaviness on my chest.

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.

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.

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.

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! 

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.

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.

So yes, cancer has got me completely on my arse right now. But it won’t be for long.

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.

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.

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.

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.

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.

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. 

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. 

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.

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.

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.

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.

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. 

I’m also on the local hospices books in case they can offer me any support during treatment.

Glad that’s written and out there! 

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

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.

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. 

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. 

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. 

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.

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.

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. 

I’m hoping I will have a plan soon and when I do I’ll let you know.

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.

Thank you for your love much sent back.