On March 20th 2002 at 00:30 my mum was rushed into the John Radcliffe
Hospital with acute myeloid leukaemia (aml). This is a journal of our
fight against the disease and all things in between. What's written will
sometimes be happy, sad, distressing, and occasionally mundane.
She was in remission until March 2004 when the disease relapsed. In July 04 she had a
non-related bone marrow transplant. So far everything is going well and she has returned
to full time work.
Originally mum was meant to trek The Great Wall Of China. However due to the leukaemia relapse I went instead.
We raised £4124.40 for the Anthony Nolan trust. But that's only the beginning, in November I shall be trekking in the jungles and mountains
of Mexico to raise money for the same charity.
Although yesterday was a good day last night was a bad one. Ma had a very severe case of the tremors, so bad in fact it has a name: 'rigor'. According to the nurse its like watching someone who is possessed the shaking is that bad, in the end they had to give her pethidine which brought her down after 30 minutes or so. They now think that its brought on by the anti-fungal they have to give her so now she's scared eveytime they administer it, fortunately this is the last day of chemo so things should pick up from here and now its recovery time.
I have to say happy birthday to Rammers and sorry I'm not there!
Time spent at the hospital: 3.5 hours
Music in the car: 'Big Red Letter Day' by Buffalo Tom and 'Substance 1987' by New Order
explained si @ 17:46
A good day today, in fact it was a very good day! Virtually no tremors and the ones that she did have were over very quickly. Tomorrow is the last day of chemo for now, from monday onwards it's recovery time building up to going home hopefully in time for her birthday on April 18th.
Today she looked through the wards wig catalogue, they are damn awful but I take great pleasure in telling her she should a Barbara Winsdor/Peggy Mitchell. Shes been cracking jokes and having a laugh but she's still pretty drained and spends a lot of time asleep. This isn't a bad thing because if it helps her get her strength back and get her home then more power to her!
Time spent at the hospital: 6 hours
Music in the car: 'Rooty' by Basement Jaxx and 'Since I Left You' by The Avalanches
explained si @ 20:04
I didn't post yesterday and in some respects that's not such a bad thing. Yesterday had been a good one certainly during the day, however, as I discovered today the night was very bad. Due to ma's very low haemoglobin count (as a result of the chemo) she was having extreme difficulty breathing so much so that they had to put on oxygen for a while and I think it really scared her. Although I'm slightly worried about the situation or more significantly its possible repitition I'm more relieved because she came through ok.
So today they gave her blood today and it certainly helped her breathing and general energy level, her temperature was down to below 37°C and she definitely looked better. However her legs are very swollen, this is apparently due to water retention because her liver and kidney function is being affected by the chemo (not working properly). I bought her a pair of O'neill sandals and a Thorntons easter egg and thankfully this managed to cheer her up.
Only 2 days of this first chemo session left!
At some point, when my grasp of html code is better, I shall find a way of putting a permanent thankyou to all my friends who offered words of sympathy, encouragement and support or even turned up on my doorstep! For now you know who you are and I can only say thanks, but big thanks!
Time spent in the hospital: 8 hours (3 thurs, 5 friday)
Music in the car: 'Music Has The Right To Children' by Boards Of Canada, 'King For A Day Fool For A Lifetime' by Faith No More and 'Cold Water Music' by Aim
I have to say thanks to the welshman for lending me his laptop. It means I can log in and update on the day over the next weekend instead of trying to remember a lot of detail on tuesday!
Today doesn't seem to have been too bad, however the doctors and nurses think that the antibiotics are causing the really bad tremors and very raised temperatures. The very high temperatures are also causing some really bad red blotching on her legs which are sore. So they eventually decided to change the medication to a different antibiotic but in a episode typical of the state of the NHS it costs more than the current medication so there was a huge debate of whether to actually administer it! Surely there shouldn't be any question of giving her or any patient any medication if it benefits them? Maybe I shouldn't bring politics into this weblog but I believe it's relevant, it's frightening that an institution which the general public depend on should be in such a state?
Time spent at the hospital: 3 hours
Music in the car: 'The Last True Family Man' by Freddy Fresh and 'El Oso' by Soul Coughing
explained si @ 21:16
OK so today was a better day, ma's temperature was down for a change it even got down below 37°C. She had the last heavy duty chemo shot of this session as well, the big red one! She's slightly affraid? intimidated? by this shot because its a) big and b) red and looks really alien. It also goes in very slowly via syringe over the course of about 15 minutes and is quite a shock to the system. The other chemo doses are all small and clear and easy to deal with, all the other medicines they administer (the saline, antibiotics, antifungals etc) are all clear so there is that subconcious connection...
I have to give credit to my stepdad, he is staying over every night while the chemo is taking place and this is a massive pyschological boost for her. I think that just having someone there when things get a bit rough, like when she has bad tremors or her temp is way up is making a big difference to the way she feels.
Her friends have been very supportive too. She got a fantastic letter yesterday from the head of the college where she used to teach, it was quite an emotional thing and certainly made her cry but it was full of support and encouragement and hope and positive vibes!
The consultant, doctors and nurses (especially the nurses!) have been fantastic and I can not praise them enough! The ward catering leaves a lot to be desired though, they come around when I'm there in the evening and everything smells like mince beef and I think it's that which is making her feel sick all the time. All the patients are only supposed to eat carefully prepared food to avoid the risk of infection but when you see some of this food they bring you really have to wonder what's going on. We've started taking in food for her now so that she can eat and keep her strength up because the catering is just a bit too dodgy for our liking!
Time spent at the hospital last night: 3 hours
Music in the car: 'Let Me Come Over' by Buffalo Tom & 'Songs From Northern Britain' by Teenage Fanclub
explained si @ 08:55
Yesterday evening was a diificult one. Mum was running a really high temperature, 40°C+, and completely burning up. We had the windows open, the fan running and wet flannels and towels wrapped around her head and neck. It took a while before her temperature came down and it was a scary one for a while. The previous night was pretty bad as well with a similar situation, high temps etc and it really scares her because this is all an unknown quantity, fortunately my stepdad is staying over at the hospital which helps her amazingly.
Today is the 5th day of the first course of chemo, halfway there! Her white blood cell count is down from 700+ to around 6, so the chemo is doing its job, the doctors are happy and the consultant is happy which means that we, and more importantly mum, are happier. All we need now is for her temperature to break!
Last night though my stepdad was winding me up a bit. When her temperature was really high and she was suffering, all she really needed was silence and to be allowed to sleep but he couldn't keep quiet. Every couple of minutes he would do something that would just break her out of her slumber, there would be a silly comment or a spoon rattled around a cup, he didn't seem to be able to accept the silence for what it was. I understand that he feels helpless and frustrated, but all we can do is be there for her and sometimes that involves just doing nothing!
Time spent at the hospital last night: 3 hours
Music in the car: 'Hinterland' by Aim
explained si @ 08:41
Unexpected phone calls are freaking me out. Everytime my mobile rings or my land line goes off I loose it for a couple of seconds until I find out who is on the other end of the line! It shouldn't happen but I guess its all part of getting used to the situation, I haven't learned to relax since wednesday and I'm constantly on edge. Things that I watch on tv that normally make me laugh just don't, its like I'll feel guilty about laughing if I do so I just shut it out...
explained si @ 13:28
This blog is to be the diary of the fight against a disease, not my fight but my mums, this is just an outlet...
Last wednesday we discovered she had contracted acute myeloid leukaemia (aml). how do you deal with that? You go to bed and everything is right with the world, you meet a new girl, you've got good friends, and an ok job! You wake up and the world has changed, you have new priorites and your girl bails! When my stepdad phoned to tell me the news (at 07:15) I thought the worst, he was loosing it on the phone, I thought she was dead! When he managed to tell me what the situation really was I was relieved, compared to the alternative it was good news!
She's had 3 days of chemo so far and it's doing it's job but it's early days yet, and this is going to take 6 - 12 months before we get the result that we want. There's a 70 - 80% chance of getting to full remission and this is the first goal, but it's a day by day process and we all have to stay strong for her and thats easy for now but i suppose time will tell.
I have to thank my friends especially Vicky and Rammers and Bully, because they've been there for me. Most of them live a good distance away so who do I turn to when I need a hug?