As 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.
To cut a long story short, it looks as though the cancer has come back. God I hate writing that.

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.

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.

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.

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.

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.
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.

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.

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.
Xx