I'm alive! So sorry there hasn't been an update since surgery but to put it in briefest terms, the surgery went really well, I recovered much better than anyone could predict and was cared for by the most incredible team of people. 

I will be updating you in more detail soon but I just wanted to write a short blog in the hopes it may be cathartic. My tumour was removed as were 22 nearby lymph nodes. 11 came back showing cancer. I will almost certainly be needing more chemo, I had a CT scan last week and will be getting the results this week. I am terrified.

Scanxiety is the term coined for the fear you feel waiting to hear results of your scan which will tell you whether the bastard that is cancer has returned, gone or spread elsewhere. I've been in very similar situations all my life, being checked in various ways and waiting for results. However I think this is the worst fear I've had. 

My treatment options are limited due to all my other health problems. It is genuinely a miracle that I am still here. Istruggle every day and get bloody sick of it. 
But I love life. I want to continue with that life and I battle every day to do so. Right now I'm terrified they will have found cells elsewhere. I can't think of any future plan, idea or date without that nasty little voice saying "you might be dead by then". To think of hearing those results makes my stomach churn, nausea take over, experience panic symptoms and makes my breathing erratic. I've been angry, sad, defeated, determined and constantly on the verge of tears. Not knowing if I'll leave that appointment extatic or heartbroken. 

I want to live, but life seems to keep getting in the way. 

It has been an incredibly hard time and I have a hell of a lot of new war wounds to show for it. I don't want more treatment but I will do anything that needs doing to try and give myself the best chance. Is it easy? No, none of it, not one bit. Am I scared? Utterly. Have I always felt supported? No I think this has been one of the loneliest times health wise which I really didn't expect. Yet as much as every fibre of me cannot bear to go to that appointment, every little bit of me is tired of the waiting and just want to know if I've dodged the bullet for just a bit longer. 

I will let you know xxx


All change

So sorry to have to post again so quickly with different news but what can I say? That's life! 
I heard today my surgery is cancelled until next week. Two of the big team involved can't make it this Thursday and my surgeon isn't comfortable to go ahead without them, and if he's not 100% then neither am I. 
Gutted as I got mentally ready to do this but it's for the best and I trust the team implicitly so if they say wait then we wait. 

Just wanted to keep you updated. Thank you so so much for the wonderful comments and messages on this post  http://tor-pastthepointofnoreturn.blogspot.co.uk/2018/04/surgery.html they've made my day xxxx



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