Well, its been an eventful coupla days. We got the stem cells collected on Tuesday and I thought ‘yey great’ this is really good. Got there on Wednesday and my line worked, thank goodness which was a huge relief but it did take us an hour and a half to get to hospital! They left ‘Billy Blood drop’ out to greet me on Wednesday morning too! Thats him there.Anyway after a while Jo, the nurse came in and said that unfortunetley they had only collected 500,000 cells. They needed 2 million and I was predicted to get that in one sitting on the Tuesday or just under but I’d only produced 25% of what they thought. They said Dr. Haynes had been told and that I would stay on the machine for today but there was no point after that and unfortunetley we’d have to look at other options.
So I was absolutely gutted and deflated. I got home and went straight to bed, I just kept thinking, nothing ever goes right for us, when are we going to get some good news. I felt so low and fed up and I did at the hospital too, it was horrible sitting there knowing it was probably for nothing. and the fact that I'd had the needle the day before and was so proud of myself for doing that and getting through it and now it seemed as though it was all for nothing. I went straight to bed like I said. It was only about half 3 but when I'm feeling low all I do is sleep cos then I don't have to think about stuff and it goes away for a few hours....unless I dream about it of course! I sleep alot cos im shattered as well, not always cos I feel like shit! But the two tend to tie in together.
Anyway I got in and went to sleep. About half five dad came in and told me the hospital had rung, with that days collection and the few they got on Tuesday I had managed to produce the required 2 million cells! I have to say I didn’t feel instant delight, my emotions had been played with too much for that, I was mentally exhausted but today I do feel very good about it and I realise how important it is! They can now do a stem cell transplant to hold it until a donor can be found so finally we’ve been given some positive news!! FINALLY!So that’s all good anyhow. Feel better today emotionally though still a bit on edge but better than I have been. I’m tired still and my breathing isn’t great which is slightly worrying but I’m hoping its down to energy levels rather than the lymphoma pushing on something. I can never really tell. I ache a lot as well, in my back, could be GCSF or could just be random aches. I have like so little energy its hard to tell what is causing what. I hope the GEMP holds the lymphoma till they either do another lot or do whatever they are doing next. I think the most realistic outcome of the PET scan will be that its shrunk it down but not by a great deal, it will prob have grown back a bit. Just hope its not starting already!
That’s not me being negative but realistic and its what the doctors think as well. My PET Scan is Tuesday and my appointment with Dr. Haynes a week after on the Wednesday. Apparently he was thrilled that they had got stem cells as they haven’t done it from GEMP at Nottingham before so I’m a guinea pig!
My taste buds are going all funky again, cant find a drink of squash that I like the flavour of, think summer fruits is the best of a bad bunch. And everytime I take big gulps my stomach feels queasy. Its horrible!
But honestly I do feel a lot better today, sat on my computer all day really and done nothing, well except go on facebook! And now I’m on lifesite which always makes me feel better.
I read a story in Take a break today about someone I know through the Internet who had what I have but hasn't had the complications I have had. They have had RCHOP and are awaiting scan results to see if it has worked. There is no reason to think it hasn't. Their halfway scan showed good progress. The article in theory is a great idea to rasie awareness and everything but it made me feel a bit weird reading it, this lady is lovely and if she's reading this I dont want to offend her or anything cos I'm not her and I dont know how she feels but i just thought the article was very negative and a bit dramatic which probably sounds harsh but when I think to all the complications I have gone through having RCHOP wasn't that bad. I'm not saying it was nice but she was talking about dying and about how if she relapsed there wasnt much more that could be done which isn't true - i'm living proof of that! They can offer radiotherapy, stronger chemo, Stem cell transplants, other treatments, there's loads more options and she had planned her 'last days' and thought about her funeral which when I was on RCHOP I never thought about, it has a 85%+ rate of success and her tumour at the midway stage was shrinking so why should that have stopped?! I just found it a bit strange reading it and maybe i'm being really harsh but i just thought if someone who has just been diagnosed is reading this they would be devastated! I just hope the next part is more positive and uplifting cos from speaking to her I know she is a positive person so I was a bit confused. She has a great chance of a cure. I'm not dramatising my story but my odds are 30% compared to her 90% and I just feel that at those odds, thinking about your funeral isn't the best option! I'd love to be in her position, that sounds strange but I mean in terms of treatment being straightforward and working. I just know I never thought about death or planned my funeral when I was at that stage but hey maybe thats just me....maybe I shouldn't have written this but I have now so whatever....I hope I dont casue offence. Sorry to the person whose article it is, if your reading this and I have. Maybe its just me being a bit selfish and over pitying of my situation, everyone feels differently I guess.
Anyway I’m now going to leave this here for today.
xx
xx
1 comment:
hey Mel its niki here no offence taken honey but maybe i was in a different position to you, i have 2 small children and a macmillan nurse came to my home and we did a last days plan i felt this was a very hard thing to do but at te end of the day if my rchop hadnt of worked i had 2 small children a husband, bills etc to think about i am positive but when you are told you have cancer obviuolsy you know you could die, id be a fool to think this is not possible, i wish it wasnt in my mind i wish i didnt have to write a will etc but i did as i have massive responsibilites in my life and they are in the end what have gotten me through this, TAB have followed me every where to each chemo, macmillan appointment, dr appointment gp appointment, my whole life has been followed and they have choosen what to write a tiny look into my life and RCHOP is hard very hard it drained me and made me very sick,and there is no point in lying to the readers and making out chemo is a breeze its not far from it. i am just lucky that it all worked, i was told at the beginning my cancer was curable but if the rchop didnt work(which as we know doenst sometimes) i could be dead by christmas as my tumour was already effecting my organs.This scare me and TAB knew everything i have exposed my life 100% which has been hard very hard at times but i just wanted to show people you can get through it, PLease see what i have done as a positive thing for our cancer i am also now setting up a support line for cancer patients , i ope as you read my next articles some which are very exposing aand personal for me you will see i never meant to dramatise this at all just tell it like it is, Good luck with the new treatment and i will send you my angels xxxxxxxxx niki
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