>And again….bollocksy bollocks! (apologies for the second time to mum and dad)

>I was going to save writing again until my next check up on Friday when I would know some stuff for certain but this last week has just been so eventful, and I now feel I must have been such a bad person in a previous life (thank god I don’t believe in reincarnation in reality!!) that I thought I’d share.

So it all started on the day of the Royal Wedding (and can I say what a lovely, lovely ceremony I thought that was….perfect and it seemed so personal for such a HUGE event). We had friends over for a bbq lunch with their kids and after having spent a number of hours eating in the garden, the men decided to take the children to the park for a quick run round. We were to join them 10 minutes later. 8 minutes later, they’re back with Rebecca being carried. Bless the poor honey, she had fallen off the posts on the obstacle course, hit her eye on the next post and gashed it open. 1.5″!!!! So a couple of hours in A&E, glue and 10 butterfly stitches and we were home! I have to say she was very very brave and we were very proud of our beautiful, if bloody and bruised girl.
Anyway, all stayed quiet until my next check up yesterday at the Marsden. I’d been a bit nervous as the cheats test that we’ve been able to rely on until now had not looked good when I was there last 2 weeks ago. But since then, I’d felt pretty rubbish and so was hoping that the drugs were kicking in. Sadly, it looks less positive than that and my results look the same as they did 3 weeks ago at the last consultant appointment. I will find out for definite on Friday. I spent the rest of the day pretty miserable and couldn’t stop crying at the hospital (which I have NEVER done – I want to be known as the strong, happy patient despite being young with kids!). And it was a long day – 6.5 hours as it was mega busy and then they forgot to send my prescription down! I’m not worried about where it leaves me now, as I am comfortable about them going ahead with the transplant which we think is the next stage. It’s not like the velcade didn’t work…it did…it brought me down from 27 to 14 which is great. And overall I’ve come down from 50. So while for some people 14 is a bad number, for me, it’s a pretty good one.
What I’m sad about is that it potentially rules out 2 main drugs from my treatment regime in the future…unless they’re prepared to keep swapping me between drugs on a fairly frequent basis, I just don’t seem to respond for more than a couple of cycles at a go. So that scares me and the ‘what if’s’ start coming up in my head.
‘What if the transplant doesn’t give me a good remission (2-3 years) and I end up having to consider the allo (sibling transplant with 30% mortality rate in first year)?’
‘What if I don’t respond to any of the drugs any better?’
‘What if I can no longer look at 5-7 years as a life prognosis, but am looking at 2-3 or less’
And then there is the whole frustration of that I now have to do another 1-2 cycles on the velcade while they decide if I’ve definitely plateaud. I don’t mind being on it and having the neuropathy or the exhaustion, or any of the side effects if I know it is working. But to do it for no reason at all, when I know the drugs aren’t working, just seems rubbish, unfair and totally totally crap. In some ways I hope the neuropathy gets worse so that they take me off for that reason.
And then I slap myself and tell myself to stop doing the ‘what if’s’ and the miserableness at as it doesn’t help anyone. And today I felt better about it than yesterday. So perhaps giving myself permission to do that whole morbid, sad thing for a day isn’t a bad thing….it gets it out of my system (for a while at least) and allows me to get on with life like you have to, and to be honest, like I want to. I am always much happier when I don’t allow it to take over my life.
So today started off better. I still feel ok as the neuropathy and other side effects have died down since my week off, and hopefully won’t kick in for a few more days at least. So I went shopping, caught up with people and was doing ok. Until I heard the news that someone very close to me in the family has had some test results that aren’t ideal. I don’t want to talk about it in great detail on here as it isn’t my place, but I love them very much and don’t want them to be going through all of the insecurity that I can truly sympathise with. I don’t want them to have to go through it and I now understand how helpless they feel with me. And if that person is reading this, I will ALWAYS be here for you and will ALWAYS do what I can for you while I am.
And here’s hoping and praying that all the worry will be for nothing…..for them and for me!!
So bollocksy bollocks (oh out of all the words I shouldn’t use, I love those so much!!) really does sum up the last week or so….and there are about 3 other events that I haven’t even mentioned. I think 2011 could be a tough year for us as a family…but we are strong and WILL get through it. We are all very lucky to have each other, and very lucky to have close friends too.
Anyway, will update again after Friday…..
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4 Comments

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4 responses to “>And again….bollocksy bollocks! (apologies for the second time to mum and dad)

  1. >Hi Deb. Try not to worry too much (I know, no chance). I remember getting into a right state when Mike plateaud at 10.Your poor daughter looks like she as been in the boxing ring with Mike Tyson. Luckily kids seem to heal really quickly. Lorna

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  2. >You have had a tough week and I am sorry you are going through this but I am intending that good news is coming with your next doctor visit, for the highest and best good of all concerned…so be it and SO IT IS!!! whoooo! amen.

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  3. >A fine use for bollocks! ;)Here's my tuppence-worth: at least you have the option of transplants… and by the time you come out of remission from them (if that's what happens)the medics will have come up with another set of super-drugs to try. It is such a fast-moving field that I have LOTS of hope for young people like yourself. Oh and big hugs to your poor daughter – ouch!

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  4. >What a shiner! It would make a lovely shade of eyeshadow. A complete stranger said to me recently that his father used to say, it's okay to be concerned about things but worrying constantly doesn't do you any good. Sounds about right to me, although I know it can be hard if that's your nature. Chin up and well, all that bollocks! ;D

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