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.
Mum had a really good day today. As part of her job she went to visit an illustrator in Henley who is working on some new fungus the bogeyman style guides. She got dressed up, put on some slap (or makeup or war paint, call it what you will). They had lunch in pizza express and she caught up on all the gossip. This will sound really trivial to anyone who doesn't know the history of this site but that's the first time in over 6 months that mum has eaten out in public and now she is beginning to grab back even more of her life. She is planning to back at work in a couple of weeks and she went in to see the co-disrectors of her company who were over the moon to see her again.
For now things are going well.
Listening to: 'Portishead' by Portishead
explained si @ 19:33
I realise that I've been neglecting this site, my head has been all over the place in the last couple of weeks and I haven't been able to post much of any worth. So I decided to change the html myself, this is only my second go at this so if anyone has any constructive criticism please feel free (tips on posting images would be welcome!).
I'm not sure why I haven't been posting very much or very regularly but I think it may have something to do with a lack of drama with mum's leukaemia at the moment. Basically she is very well, they have started doing up the new house and she is driving herself all over the county. There are some fairly significant days coming up such as the removal of the hickman line and the first test for leukaemia cells but I'm not sure when they are. Her blood counts are rising nicely but I'm still in quarantine because of my cold.
explained si @ 16:31
I feel better about things today. I've had the chance to talk it through with S and I feel ok. Monday was equally tough and sunday had definitely got to me.
Mum is very well and should be having her hickman line removed soon. She is in good spirits and they have been making plans for the new house.
explained si @ 17:35
Today was a difficult day. I spent 6 years living in Portsmouth but haven't been back in 3 and it was a strange feeling to go back again after so long. Some things haven't changed, however there is now a landfill mountain on the way in, but the docks are still there as is the smell. I had thought about taking a camera with and getting photos of some of the places I had lived and pubs I had frequented but decided against it in the end.
It was good to see old friends again it was just a shame that the circumstances couldn't be more pleasing. There were people there I hadn't seen in something like 7 or 8 years, and for at least one person I had never met I had become a myth. I suppose the scattering of the ashes went well, it's hard to say. The ashes were scattered so does that make it a success? I suppose it does. It was a nice day, the sun was shining and there was an offshore breeze and a good number of friends and family had gathered. Some tears were shed by family and friends and I think it gave them closure, the final act in that story if you like. I didn't cry but we all have our own way of dealing with these things but should I have felt more? I don't really know, I don't feel guilty but I sometimes wonder if I have some emotional void somewhere. I didn't feel any emotion at my uncle's cremation...
explained si @ 21:06
Ok told mum about Portsmouth and the ashes scattering this afternoon whilst visiting their new house. Barb, you were right she was really good about it, really understanding and genuinely sympathetic, so thankyou. I guess I was just affraid.
I have mixed feelings about tomorrow though. On the one hand I'll be seeing a lot of friends who I haven't seen in a long time (we're talking years) but this will tempered by a certain amount of sadness. I don't think it'll be too bad though.
explained si @ 18:23
I haven't told mum about sunday yet, about scattering the ashes. Part is to do with the timing of when it all originally happened (21/06 - 22/06) but I think a large part of it is the whole death thing. I don't want to upset her and I can't see any reason why it should but I still think it might, remember she no longer watches ER et al. I suppose I'm going to have to explain if and when I tell her I'm going to Portsmouth for the day.
Listening to: 'Irresistible Bliss' by Soul Coughing
explained si @ 19:19
Once more I'm in quarantine. I have a stinking cold and because mum's white cell count isn't high enough yet it means no contact because the risk is too high. Mum herself is very well, she went up into town and was even going to walk around the park in the palace grounds except she forgot her pass. The walk itself is about 2 miles of glorious parkland which may not sound like a lot but when you've been having chemo, blood and platelets that's a long way.
I guess we've all begun to relax a bit. The next big milestone will be when they test for leukaemia cells, I don't know when that is but I'll let you know. I hope that I can think about getting back to my life which is a bit selfish of me I suppose. I'd like to think about finding a new job, do some travelling (hopefully Canada if I can save the cash), and go and visit some friends who I haven't seen in a while and maybe take in a football match or two (superbees!).
Listening to: 'Unseen Ripples From A Pebble' by The Wolfhounds
explained si @ 19:12
Mum is very well. She had to go into clinic today for blood but doesn't have to go back in until friday and hopefully this will be her last blood.
Listening to: 'Asquarius' by Cud
explained si @ 18:24
On the 10th I wrote (briefly) about a fellow patient and friend of mum's who was told he was going to die. They gave him up to a year to live. Today mum found out he had died within 48 hours of being told. It would seem some people just give up, conciously or sub-conciously, when they receive this information. The same thing happened to my uncle when he was diagnosed with cancer. Of course for every one patient this happens to I'm sure there are many more who go out fighting. Feel free to shoot me down in flames.
explained si @ 16:37
There is someone inspired working at or for Lego. The camelot song from 'Monty Python And The Holy Grail' as performed by lego figures (with thanks to The Guardian Online supplement). Also check out the 'Han Solo Affair', I want a Boba Fett lego figure.
explained si @ 17:25
A breakthrough by Cancer Research UK? This BBC news article reports a DNA breakthrough for boosting the effectiveness of chemotherapy drugs. A practical application would be a few years away but it gives hope for the future.
Listening to: 'Repeater' by Fugazi
explained si @ 17:06
Well that's that.
Once more the devil farts in my face and calls me susan.
explained si @ 07:34
Despite having to gp into clinic on a regular basis things are picking up. Mum's blood counts are starting to rise and her white cells are regenerating now.
I need some advice. What would you wear to the scattering of someone's ashes? One week on sunday we are scattering my friend's ashes in Portsmouth and for some bizarre reason the only thing I can think about is what to wear.
Listening to: 'Trojan Dub Box Set' by Various Artists
explained si @ 19:32
Mum is doing well but she finally bit the bullet and shaved her head again. When we spoke on friday during dinner with S, she had found out that a friend from the ward was dying. Today at clinic she found out that another friend was dying, some tears were shed but what can you do? I discussed the situation with S and 'survivor syndrome' came up, it's an interesting concept. However mum doesn't suffer from said syndrome because she isn't a survivor. We discussed the issue tonight and basically she feels bad, sympathetic, sad even but she is still living with leukaemia and isn't cured and isn't a survivor - yet!
Listening to: 'The Prime Of...' by Horace Andy
explained si @ 19:02
Mum is doing pretty well although she had been in a lot of pain for a few days. She had, for want of a better description, a cyst in her nose and pain down the entire left side of her face. She went into to the hospital on friday to receive blood and platets and while she was there they changed her antibiotics and gave her gave her some nose drops and hey presto the pain pretty much disappeared and now she can sleep at night and she has her appetite back.
Listening to: 'Man Mountain' by Blue States
explained si @ 16:43
I have spent 28 hours feeling joyously happy, 28 hours of glorious, splendid isolation. It's amazing the effect that 2 people can have on each other. For a time I could forget everything else and just concentrate on being happy.
explained si @ 15:42
After the emotion of yesterday I noticed something on the way to work. I had a spring in my step, I actually felt really good, really happy. Why? Only you know the answer to that and you know who you are.
Listening to: 'The King Of Nothing Hill' by Barry Adamson
explained si @ 15:14
My friend died just over 2 months ago.
I just this minute crossed his name out of my address book.
I never had any time then to think too hard about it, I think I was going through the motions.
For the first time I feel real sadness.
I want to cry. Cry is wrong, just a profound sense of loss for a while.
explained si @ 10:08
It's strange the things that can reduce you to hysterics (that's laughter) and an amazing feeling when you know it can still happen. Tonight it was down to the fact that my stepdad can't roll his tongue, don't ask how we got onto that subject because I don't know. He can however extend his top lip downwards in a strange and subtle (almost imperceptible) manner. This probably sounds trivial, childish even, to the uninitiated reader but it's a brilliant feeling after so much pain to be able to let it go like that. Carefree.
As you can tell spirits are pretty high but mum's hair is starting to fall out again and I think it's getting her down a bit. She was hoping it wouldn't happen but it wasn't altogether unexpected, it's just a bit demoralising.
Time spent at the folk's: 3 hours
Music in the car: 'The Last Broadcast' by The Doves
explained si @ 21:29