Sunday, April 22, 2018

I'm sorry I haven't blogged before now. I've wanted to but I've been finding it all quite hard going and every time I've tried to blog I just haven't had the words. So here is a much shortened update for you all. 

I finished my chemo at the beginning of March, it wasn't as bad as I thought it would be and everyone was impressed with how well I coped. The last few sessions were tougher and throughout my platelets (blood clotting bits) kept going very low which was dangerous as I risked internal bleeds. On those occasions for my safety we had to miss a couple of sessions. 

After that I had a scan, my tumour had shrunk a tiny bit, but hadn't got bigger or spread which is what I hoped for.  Then came the question of if I could have surgery to remove it. Basically the operation removes both the cancer and a significant portion of the stomach to make sure the cancer and any stray cells nearby are removed. It's the only hope of a cure. Without it I would be on permanent chemo but because of my other health issues there aren't many forms safely available to me. I would be on it for the rest of my life as it would only slow cancer growth, they gave me roughy 12-18 months without surgery. A time that would certainly be spent feeling fairly bloody awful. 

So surgery is what I pushed for but being me it isn't so simple. They remove a portion of my stomach, take around 40cm of intestine to reply b everything back together. However I have essentially a higher blood pressure in the veins surrounding this area because of my liver disease. This means there is a very real chance of causing a large bleed. It can also cause a lot of pressure on my liver and spleen so they have a risk of deteriorating after surgery and may require a stent to be placed. Immunosuppression means more risk of infection or sepis. I've therefore had to have tests, on liver, heart, exercise capacity, and been assessed by various health professionals whose duty have been to inform me of all the risks and possible going wrongs. My odds of death are higher and to be honest it's been quite scary. Very much being back to pre-transplant life.

That's the thing I have been granted 6 wonderful years, not all of it wonderful but always thankful for my extra time. But it will never be enough. I have so much more I want to do. My risks of cancer returning again due to a lowered immunity are higher than average to. But surgery is a chance and once more I have to make the ultimate risk to have the ultimate gain. I want this thing trying to rip me apart out of me asap. 

Thankfully despite all my extra needs my amazing surgeon has agreed to operate. I will go in this Thursday to have surgery the same day. We all know the risks but the team at The Royal Marsden have been incredible and I cannot be in safer hands. We have a great team, a liver surgeon who is literally in the room as a 'just in case you liver goes crazy' scenario. The Critical care team apparently feel the president is coming as they know my case so well! They have covered every base and I cannot ask for more than they are doing to make me as safe as they possibly can.

I'm still really scared. It will (hopefully) be a new life ahead with many changes. Potential liver issues, definitely stomach issues. I won't be eating normally for a good while if ever again. I start with no food to let stomach heal, sips of water, other fluids, soft foods then will experiment with what works for me without causing problems swallowing etc. It's bloody daunting to think I might not ever eat a normal size meal again especially as post transplant I love food and the social side of it.
 I will need scans every 3 months to check no cancer is returning. Potentially more chemo too but that's not decided on yet. 
 I will also be in hospital for my birthday which I'm a bit sad about but also kind of amazed hasn't happened before despite my history with deadly illnesses, and also thankful as I know lots of people including many kids who have spent lots of birthdays in hospital. I'm pretty lucky this is my first time.

So that's the update. I will try to let you know how things are going. Your support on my journey has meant so much to me. I'm not planning on checking out just yet but know that if I had to live my life over I wouldn't do anything differently except enjoy it a little more. 
Please send healing thoughts, prayers, whatever you do, the first few days seem to be the most important an dthey would be appreciated. 

See you soon, beyond the point of no return xxxx 

"If I should die in the fight to be free, where the fighting is Hardest there will I be" Les Miserables 

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  1. I've been checking back regularly to see if you'd updated! I literally just watched a documentary on CF and at the end I thought of you - and now you've posted again! Thank you for taking the time to write an update. Good luck for your surgery and I'll be thinking of you. It sounds really, really tough. I'm glad you got those extra 6 years and I hope you get many more.

  2. Constantly inspired by your beautiful writing and your courage, I'll be thinking of you, Anna xx (long-term blog reader!)

  3. Hello Tor, I'm sure there are many more readers like me who never comment because there never seems anything sensible or helpful to say in response to everything you go through with such grace and courage - let alone all the wonderful things you do that many of us with far less excuse don't get around to (performing, writing, cakes, the gift deliveries to hospitals, and your campaigning and support for others).

    I'll take the risk of putting my foot in it today in case it helps, though and tell you that I regularly think of and take inspiration from your story and your attitude. I wish, (I even pray), hope, and believe that the surgery will go as smoothly as possible.

    If it was possible to offer something practical by way of support to help make your recovery less tough please keep telling your readers what you need whether it's tips or something tangible (audiobooks? music?) or, later, a project that you're looking forward to and need help with. Meanwhile, very, very best wishes are pointed at you, for this week, and for the future too.

  4. I really hope all goes well for you on Thursday and you stay positive before then. We will all be keeping an eye out for your posts when you feel up to writing.

    Best wishes : )

  5. I'm so pleased they agreed to do the surgery for you. I'm sending all of my love and thoughts that all goes smoothly. Jen x

  6. I am also a long term blog reader and have been reading your twitter updates since before your translplant. Like others I haven’t been posting comments but I just wanted to say how truly inspiring you are. All the best for the operation, I can’t put into words how much I hope everything goes well for you. All the best.