Thursday, May 17, 2007

Don't panic, don't panic!!

I had a good day yesterday and a shitty night.

We've started to gradually pack up the house to move. Well actually we've started to clear away all the crap that's accumulated, that we haven't got round to doing anything with for the past 3 years, so that we can then start packing. You know how it is.

Anyway that lasted about an hour and a half until I started putting on CDs and Nic and I got dancing until around 11ish. Built up a fair old sweat we did, listening to classic tunes (from 2003/4) and then we went to bed.

I'd noticed on my ride back from work and when I'd been dancing that my spleen was giving me some jip, which is to be expected because your spleen helps in the over-production of white blood cells and swells up as a result. On top of that being off my drugs for a week has been nagging away at me. I keep wondering what's going on, how this things eating away at me with nothing to fight against it. How it might be affecting me.

It must have been nagging away at me much more than I realised because at 12.30 having gone to bed and fallen asleep - uncomfortably because i didn't want to lie on my spleen side - I woke up in a muck sweat and very short of breath. I'd been half expecting the nightsweats to return, as this was what alerted me to the fact something wasn't right in the first place, but they really came back with a vengeance. I was sat on the edge of the bed blowing manically and dripping wet, very disoriented and starting to get panicky, because all my focus went to my spleen and suddenly it felt like it was the size of a football. So I got up clutching my side and went down the corridor and sat on the loo for a couple of minutes then got back up again.

After a couple of minutes I got my composure back and stareted thinking you'll be fine, you're OK, it'll pass, breathe deeply, breathe deeply, breathe deeply and gradually I came out of the panic and I stopped sweating and once I relaxed I was left just with my spleen hurting.

I dropped in to the hospital this morning just to check that everything definitely was OK and I got a clean bill of health - well comparitively - however my registrar said to me.

'Are you back at work yet?'

'Errr, well yeah, I haven't actually taken any time off'


'Well no, I haven't really felt the need to, to tell you the truth. I did go on holiday for a few days afterwards'

'Yeah but you had that booked already. Have you taken any time for yourself, to adjust to things?'

It was a question that threw me slightly, because I haven't taken any time for myself to adjust. It's made me think maybe I should take some time off. I consider myself fairly honest to myself and to those around me. When people have asked 'How are you?' and I've answered 'Fine under the circumstances', I don't think I've lied yet. I don't think I've yet put a front on for anyone. Now that could mean one of two things:

1. I'm fine and adjusting to things gradually and feeling fine

2. I'm in denial, feeling fine, but one of these days I'm going to breakdown and be a wreck

I can't help but feel that it's most likely to be the former. I've never been scared of a bit of therapy or taking time when I need it. I'm no longer someone who puts everything else in front of my well being. Equally, I don't consider myself a shirker either, I always front up.

But it got me thinking. Last night was a bona fide panic attack, it may well have been about a specific issue but nevertheless there's something going on up there, so I've agreed to get in touch with the psychotherapists that are attached to my Haematology unit, to talk things through with them.

I am however going to continue going to work as normal. I don't think it would do me any good to take time. I'm not sure what I'd do. The boys are at home during the day, so it's not like I'd get time to myself to think (I mean that in the nicest way) therefore I'm not sure it would serve the purpose.

And I've tried going away on my own before. I planned to go away hiking on my own for 4 days in the Peak District. At the end of the first day's yomping I headed home, walked through the door, walked in on Nicky, who had 2 friends to stay and when she asked:

'I thought you'd gone away to find yourself'

I said:

'Yeah I did. But I found myself a bit dull, so I thought I'd come home'

I then headed off to Kings Cross, clubbing with 2,000 other people.

I'm definitely better around other people.

Friday, May 11, 2007

Slightly frustrating

Well 5 weeks in I'm feeling very well considering. I got a rather lovely note from my Aunt a couple of days ago and in writing to her I've kind of written a blog entry.

I'm still cycling in to work every day, I have stopped running though as I have found my current drug regime is making me quite tired. A couple of weeks ago I found out that I am Philadelphia Chromosome positive (PC+). Being PC+ means I am able to take Imatinib, which you may remember is the drug that aims to switch off the signal to overproduce white blood cells. Rather frustratingly I won't be able to start the new regime until 29th May for a variety of reasons. First I had to have some virology tests, second I had to freeze sperm, as the drug is suspected to make sperm toxic and in the event that we wish to have another baby it's likely we will have have to go the IVF route.

Having completed those two things I was supposed to start my new regime on Tuesday, however on seeing my consultant she informed me that she's keen to perform a stem cell harvest. It was a decision that was both disappointing and heartening in equal measure. Disappointing in that I was keen to get on with things and heartening in that the decision suggested that my consultant is right at the forefront of fighting the disease. In brief a stem cell harvest is performed at this stage in order to freeze store my white blood cells at the stage of the disease I am at currently. This is performed in case the disease progresses, at which point they will be able to replace the deteriorating white blood cells with the stored cells at this stage. The main debate is around whether to take cells now, or once I am on the new drug and it has proved successful in reversing the disease to molecular remission i.e. the cells are in much better shape than now. At present there is no clear agreement in the profession, so my consultant has decided to take one set now and one in 18 months time, at which point (hopefully) I'll be in much better shape. The issue is clouded by financial constraints, in that there has to be a justification on the trust's part to store two sets of stem cells on my behalf, however at this stage there is no real pressure on this area of treatment. However, in future I may be asked to make a decision as to whether I pay to store one set.

Anyway, the reason I couldn't switch regimes on Tuesday was that I have to be completely drug free for two weeks. It means I have to come off the regime I am on currently as well, which in it's own right is frustrating as it had succeeded in lowering my white blood cell count from 143 to 92 in 4 weeks (target 4 to 8) and by coming off the drug it will more than likely jump back up to the initial level.

Despite all this, I am remaining generally positive. I am having my low moments which I guess is perfectly normal, but the boys keep us extremely busy and the fantastic side effect of this situation is that it's prompted us to get off our arse and do, rather than talk about doing any number of activities. We've also got the move pending which means we've got plenty on generally. Nicky's a bit more up and down and quite angry about things in general, but I guess once again that's normal. We will take this as an opportunity to make the most of what we've got and make sure we squeeze every last ounce out of life.