10.07.2018

For now, I've won!

Hello bloggers! 

Sorry for the delay in writing, exactly a month I just realised! 

Firstly, thank you so much for all your love on my last post about organ donation week. I'm so grateful. I also have my own link to sign up now so I can see how many people sign up as a result of my awareness over time. 
Anyway, thank you.

So I have updates if you missed them elsewhere.... I had a CT Scan, and then the results. I was actually too ill to get to the hospital for my results, honestly just hideous. However the Marsden as usual were incredible and arranged as a one off to talk to me over the phone. My CT scan is currently free from disease. Free from disease! 17 sessions of IV chemo, daily oral chemo, a major operation to remove my tumour and half my stomach, a year to the day that my endoscopies started and this whole nightmare unfolded. But for now I have won. Maybe not forever but for now.



[my last chemo sign although I looked like crap in the photo! And a bell my sister upcycled so I could ring the end of chemo bell. ]

I have finished my chemotherapy now and am waiting to start feeling better. Right now I feel pretty bloody terrible, there's literally a new or different symptom every ten minutes. I'm absolutely exhausted and sleeping quite a lot and I'm using my wheelchair to help eek out very little energy. I have heard that recovery can take months and even years in some cases. Sometimes other complications develop as time goes on. 

It worked out well as we had Center Parcs booked for a weeks holiday the week after my chemo finished and a week before my transplant anniversary. We were able to go and while it was vastly different from our past holidays it was still lovely. I had to use the wheelchair majority of the time, I slept A LOT! And I felt ill most of the time but it was great to go for a short walk or wheel (!) in the most gorgeous settings. I'll post about my experience soon. 

So what now? Do I happily skip off into the sunset waving cancer goodbye? Sadly not. Realistically, it is very likely that with my immunosuppressive drugs the cancer will return somewhere. You can't say you're in remission for 5 years. I also have my transplant complications to consider, infection, and rejection risks. I will be scanned every 3 months to hopefully catch anything early and have signs to look for when I would need to be seen earlier. It's very much like still having an axe hanging precariously over my head. 

I cannot believe how lucky I have been to be under our incredible NHS and not paying for this treatment. I've had the most amazing people caring from me, from top surgeons to nurses, to the lady who offers me tea and biscuits every week. You have all made this so much easier and I will be forever grateful. 

I have lots and lots of ideas for blogs and will try to get them up soon, it all depends on the fatigue etc. 

Thank you all for being there and supporting me. 
If you're going through hell, keep going my lovelies. Xxx
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9.07.2018

Organ donation week

I've had the worst week since I started this cancer journey. It's been a real strain on my body and I'm gutted I haven't been able to promote organ donation this organ donation week as I have other years but I wanted to write something without letting this week go by.

Before my transplant I was dying. I was breathless to the point most of you can't imagine because I have a job remembering now I can breathe. The fatigue, pain and burning in my lungs. The constant fear that something could happen and start off down a road I wouldn't come back from. The hospice that were so supportive but also there for end of life care which hung over us like a black cloud. 




I had a difficult recovery, I've had problems since. Infections, bouts of terrible depression, biopsies, fractures, and both chronic pain and fatigue. I've had more hospital appointments, canulas, X-rays, scans than I can count. 
And the heart stopping, stomach plunging diagnosis of stomach cancer, potentially caused by the toxic drugs that stop me rejecting my organs. A picc line, chemo, major surgery, half my stomach removed, injections, pain and fear. 




Someone pointed out to me that many people would not choose my life. There have been times when maybe I wouldn't either. For me though, these have been fleeting moments. I can honestly say, that knowing what I do now if I could go back and make that choice again, transplant or no transplant I would say YES every single time. 

Life is fucking hard. Unbearable sometimes and often the nice bits are marred by pain and exhaustion. I have to change plans or plan with precision how I do things so that I can manage them. I often miss out. I will never have kids or probably my own place, or the career I long for solely because of my health. 

BUT. I am alive, and not just alive but living. I have my incredible parents, siblings, friends. Many friends I wouldn't have met if it weren't for my transplant. I have nephews and a niece that I've seen grow up for the last 7 years. I've gone to Florida and New York and Paris and Dublin and I intend to go to even more places I've never seen. I've started my own business and my cakes allow me to be part of someone's birthdays, weddings and special occasions. I've done many things not in spite of but because of my health issues. I've seen theatre, eaten delicious food, made memories. I've met medical staff who feel like family not the health professionals caring for me. I got my dog who I love so much. I've graduated. I've become a godmother. Ive been and will be a bridesmaid. I've seen my sister get married. I've connected with old friends. I've learnt so much about myself. I've overcome so many of my fears. I'm quite proud of myself rather than always hating the body but can't help but break down. 








Hopefully I have overcome cancer. Think what you like about this but I'm sure it will come back, by I intend to live a lot before it does and I will meet it and fight if it does return.
I know my life will be shorter but I intend to try and enjoy it as much as I can and do as many things that want before my time comes.  For the Harry Potter fans among you I would like to be the third brother I The a Tale of the three brothers. The one who walks away from death, lives his life and then returns to greet death as "an old friend" and "go with him willingly". 






What I'm saying is, that despite issues with post transplant issues I would always take that call and be insanely grateful for my life. I love my life and fight for it with the ferrocity that I do for that very reason.

This organ donation week please sign the donor register if you haven't already, and talk to your family because they need to know your wishes. If you'd like to help even more please spread the word on social media and encourage others to sign up. The link is in my side bar. 

I have written a short blog about my journey for NHSBT and you can read it here if you want to! https://inside.nhsbt.nhs.uk/blog/i-will-forever-be-grateful/53863/

Someone, many people in fact will not get the chance I did purely because not enough people have signed up. Give someone that chance to live. 

As a quick addendum (right word?!) to that I was interested that people were asking me to blog about my opinions on opt out and other related topics, if there are any transplant related questions or topics you'd like to hear my views on I'd be happy to address them! Leave me a comment or a tweet and let me know xxx


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8.26.2018

London day out Part 1: Clarence House, Fortnum & Mason, and Spectrum

A couple of weekends ago I had a day out. It was the first full day out since I started this whole cancer journey back in November last year. I haven't dared to plan anything and so I was very excited but really nervous about how I'd manage.

My friend Becky and I (her blog is here) booked to go to Clarence House, Prince Charles London residence. It's only open during August and we thought we'd check it out. We were excited to be out as you can see...! 


There was extremely strict security in Clarence House so there were no photos anywhere in the house or grounds. The house was absolutely beautiful and I enjoyed our visit. You are taken on a guided tour around 4 rooms with the tour guide giving a rich history of the house which I found really interesting. It was particularly nice to see a lot of personal photographs of the royal family, including the young princes and princesses and photos of Meghan and Harry's wedding. I also loved seeing a piece of Charles' own art work. 
I have some mixed feeling about this tour. So I would say if Royals are your thing then this would be something you'd really enjoy. It feels quite exclusive due to the fact that it's only open one month of the year. The house is beautiful, the information interesting, the tour guide was very engaging and it seemed very accessible with wheelchair access.
However, we found staff unwelcoming to start with, there was a delay on getting through security (leave a bit of extra time for this) and we had booked disablity tickets and were not approached about any ways in which they could assist. Our tickets were also cheaper and I'm not sure there was quite enough there for me to justify the full entrance fee. I have contacted Clarence House and they have been really apologetic and helpful about the way we were treated. Even offering us tickets for a future exhibition to show us that this was a one of problem. Clearly customer service is very important to them and I will definitely be taking them up on this offer. 
In conclusion, I'm glad I went but wouldn't go again,

We had something else booked for the afternoon but had left plenty of time to get there slowly. We had a slow walk over to Carnaby Street taking our time and stopping to look in Fortnum and Mason on the way. It's been years since I've been here and I love it! We only explored the first level but I just adore the colours, the displays, smelling the various teas, and browsing the foods and gifts. The window displays I had to get snaps of. These teacups were all made from paper and were so simple yet so incredibly effective visually! I quite fancy making some at some stage. 




We walked on to Carnaby Street and had about half an hour before our next booking. I'm so glad we decided to take a wander because we immediately found the new Spectrum brushes shop. I knew nothing about this but Becky did! The shop had only been open a couple of days, an Instagram hit pop up shop it showcased the brands amazing brushes on the ground floor, they do Disney collaborations as well as just distinctive beautiful designs. Upstairs is the prettiest cafe you've ever seen. Millennial pink, gold and dark green, it's a bright, light space with plenty of plants and large screens showing make up applications. 



The tables are comfy and you can get coffee, tea and cake. We shared a lot of hibiscus tea that was pink and really delicious! It was one of those places that you didn't plan to go to but are so glad you found. We weren't there long but it was such a nice space and I genuinely could have stayed all afternoon. Plus will you look at that glass cup and saucer with the gold spoon?! I'm not easily won by stuff like that but it was just so pretty! The staff were happy to chat, very polite and welcoming. For me it was such a nice break from the cancer bubble too! I would highly recommend checking it out but good luck leaving without buying something downstairs.





Part 2 up soon! 




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