For now, I've won!

Sunday, October 07, 2018

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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  1. This is a very beautiful post.I was searching for such information. You are doing very good work. Good Luck.
    From Team Impossible Rally Racer

  2. Hugs and love.
    So happy you had your last chemo and now are on your road to recovery your energy level. Glad you had a good time in Center Parcs. Now, rest and heal more!

    Karen |

  3. Wow, I'm new to your story but you sound like you've been through it. Take care of yourself and I hope the positivity continues.

  4. Amazing journey! SO glad that you are feeling a little better! I am keeping you in my positive thoughts and prayers!!

  5. What strength you show! Wishing you steady improvements in your health now that you have finished chemo. Thank you for sharing your story.