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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8.22.2018

Good news!

A short post BUT I had to update you!

Yesterday I went for my 5th week of chemo and recieved news from my amazing doctor at Chelsea and Westminster that the biopsy of my stomach was clear of cancer. I'm A) so incredibly relieved and B) so grateful to him for letting me know so quickly and putting me out of my misery.
 I knew I was worried but I had no idea how much it had effected me. I cried when I read the email. I felt lighter, happier, and completely and utterly exhausted. It could have meant more treatment or no more options but for now all is well. 

I have had lots of congratulations lots of lovely messages and lots of questions which is why I wanted to clarify on here as I would have questions too! So, my ulcer is just an ulcer. We didn't expect to find anything that needed a biopsy during the endoscope so it was very unexpected and a complete wild card shock to be honest. My doctor had asssured me that he thought the ulcer was in line with a reaction to my internal sutures but until it comes back you just don't know. It doesn't mean I am completely cancer free although we have no reason to suspect otherwise. I had a scan before chemo restarted and that was clear as was the biopsy. I have 4 more weeks of chemo to complete as we planned and then that should be it. I'll definitely be glad to have it over with! I don't know what will happen after. We know there were aggressive cells and that with my immunosuppression the likelihood of cancer coming back is high. However I think the plan will be regular scans to check me out. I feel like if scans are for example every 3 months, then I plan to live the crap out of those 3 months, take whatever news the scan brings and hopefully live the crap out of the next 3 and the next. It's hard to not look further than the next scan but also hopefully negates needing to cancel plans so often. 

And that's it I think. Having an end in sight is amazing.



Our elated faces! 

Thank you to everyone who has messaged it has meant so much. I can't reply to everyone but please know I'm overwhelmed with your love xxx
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