The one with the Bad News....AGAIN!

So I’m still in hospital as most of you know. I had my meeting with Dr. Haynes and its not good news in all honesty. Some of this is lifted from facebook cos I’m tired and there’s not a whole lot to add. Some stuff is different and added in. Thats me last week sometime.....Bald!

The PET scan results showed that the lump was worse than on the last PET I had, it shows the tumour is growing and its spread. I now have lumps in my belly, around my heart, there is lung involvement apparently and it’s also moving to the other side of my chest. So yeh not good. Before it has always just grown back to what it was before, this time its getting bigger.

So where do I go from here??

Well my central line has decided to be a pain in the arse right when I least needed it and has stopped working, nothing is going in and nothing is coming out! So first thing in the morning this one is coming out and a new one going in. Fun stuff but it needs to be done. I’m nervous cos I hate, well any surgical procedure, no matter how small it may seem but I just keep thinking, once its in, it’s in and I can finally start chemo which I know I need!!

Later tomorrow or maybe Saturday I start my Stem Cell Transplant which is essentially 5-6 days of high dose chemo, they put the stem cells back in on like day 7 and then we wait! My counts will drop and I’ll be prone to infection. Side effects include the usual; hair loss (not an issue anymore), sickness and sore mouth etc. Prob be in hospital for another three weeks minimum. I am having what they term ‘half a transplant’ not the full ‘BEAM’ chemo but the E and M drugs used in that, I think that’s because of the wear and tear on my body and I guess they see that as most effective at the moment.

From this comes 3 potential outcomes:

ONE: it gets a sustainable response for at least a few months (12 weeks min but really longer) enough time for me to find a donor and they and me be ready for the Bone Marrow Transplant. For me to have the BMT this stem cell transplant has to do this, it has to provide a sustainable response. Something that my tumour hasn’t done yet!

TWO: it gets a response for longer than before, maybe 4-6 weeks or so but not long enough to get a donor or enough to have the BMT. So I get some relief and feel better for a while but essentially I don’t get the BMT

THREE: it lasts about 2 weeks, same as before, again no BMT.

Dr. Haynes said he doesn’t want to guess, he would suggest logic says stronger chemo means better response but that hasn’t worked on me so far so we don’t know. He has this way of being so honest with you and making you realise how serious it all is without inducing panic which I think is a rare gift! I really get on with him and I trust him 100% that he's doing EVERYTHING to help me so I can't stress that enough. Same goes for the nurses in hospital, EVERYONE is soooo nice. I just wanted to get that across!

If I don’t get the BMT which in all honesty is likely because I need option 1 to work and that’s the most unlikely one, it will then turn to palliative care. Which means we can’t cure it, we just control it, whether that be with chemo, some radiotherapy I don’t yet know. If I get the BMT it has been explained there is no gurantee of that working but obviously we need to get there first!

After the BMT should I get it, I need to be in remission for like 4-6 months for it to work and also in my kind of lymphoma the cells can disguise themselves or something so the new immune system doesnt attack it which is the whole point of the BMT though obviously that doesn't always happen! Sometimes it works! I have to realise though my chances of a cure now are lower than ever. Not negativity - FACT! Its just how it is and I have to deal with that. I am at the moment but they'll be times when I'll find it hard but I'll keep going and I'll keep believing until I'm told otherwise!!

On another note we were told they can’t use radiotherapy as a curative option because the mass is too spread now and the toxic rays would be too much and too risky and could damage my organs meaning my chances of a BMT should I get there are much more limited.

So that’s the situation. Honest as ever, I’ve told you all the facts. I’m ok at the moment, obviously shocked and upset but I don’t think its hit me yet. I think it’s starting too. I feel like I need to cry to release everything but I can’t bring myself too yet. Maybe the tears will come tomorrow. I sort of want them too in a weird way, I think it will help! I feel like I should be reacting more…I dunno!

I’m not positive anymore, you can’t be in this situation really anymore. I’m not negative but I’m realistic. I know what’s happening, I’m not stupid and it’s not possible to keep my chin up and keep positive anymore, I’m done with that now. I’m being upbeat, I’m hoping it’ll work course I am but I’m done with all the crap of ‘just keep thinking positive and you’ll get there and it’ll help’ cos you know what sometimes it don’t! Sometimes it helps to be miserable and sit there and cry!

I saw Alison today too, my Stem Cell nurse who collected my cells last week. She said she had wanted to come see me but wasn't sure how we'd be feeling with all the bad news but like I said I'd rather see familiar faces and people who know me and can chat to me about stuff. It was such a nice visit, I really did appreciate it!

I love all the messages I get, both texts, on my walls on facebook and in my inbox and they do help. You can leave comments on here too I think but I dunno how! Never be afraid to say anything no matter if you think I’ll be offended, I won’t be. I know how hard it is for everyone to know what to say. Hell I wouldn’t know what to say! I’m also in the Aston Times (uni newspaper) this week though obviously the story is a bit outa date now and I don’t know if it’s accessible online or not.

My dad also writes a blog for anyone who wishes to read how we’re all doing and sometimes it’s a different perspective…well it is! You can access that from this link:

http://blog.myspace.com/index.cfm?fuseaction=blog.ListAll&friendID=237496223

Thanks again and I hope to see some of you soon, if you ever wanna visit notts hospital in the next three weeks or Burton after that just ask and we’ll try and arrange something.

Ooo I just had some oramorph (painkillers) cos my pain in my chest is soooo annoying and it tasted RANK! Lol as long as it takes this pain off I don’t much care!!! Least being here you can get stuff like that ASAP! I think that’s where I’ll leave it for now, I should get some sleep but I’m not ready yet….I wish my hickman line was all in and done!.....this time tomorrow…..just keep thinking!!!

I went on the lifesite chat-room tonight which is like a chat-room for people affected n who have/had lymphoma and it never fails to help….so thanks to anyone who was in there tonight n is reading this cos I’d never cope without all you lot!!

I’ll let you know how tomorrow goes…..:S