My Dad, aged 47 has Multiple Myeloma. The link provides more info on the condition but here are some basics:
- MM (Multiple Myeloma) is an uncommon cancer that develops in around 3,000-4,000 people in the UK each year.
- Myeloma accounts for 15% of blood cancers and 1% of cancers generally.
- It is most common in people aged 65 and over.
- It is a cancer of the bone marrow.
He was diagnosed over two years ago. Since then he's had numerous treatments, hospital stays and an uncertain future. He's been in remission twice, the first time was for only 2 months.
I'm not really sure how to start this as it's going to be more like an essay than a blog. On the whole, it'll be honest, open and sometimes harsh, as well as a bit of heartache and other bad stuff thrown in. Sometimes, I'll write inane rubbish, just 'cos I'm like that :D
It was suggested to me that I write a blog/diary to express my thoughts and feelings as I have no other outlet to discuss such matters. So, here's me, taking advice (for a change) and laying myself open.
Before I start, this isn't some oh woe is me thing....not at all. It's just me, trying to sort out things in my head, letting "stuff" out, even the deepest, darkest things that I daren't think about.
Ok, let's start.
In just over two years, my Dad's gone through: Chemotherapy, Radiotherapy, at least 30 pills/meds a day, stem cell transplants, bone marrow biopsies, physiotherapy, lumbar punctures, a tumour behind the eye, unable to walk, septic shock, liver damage, short term diabetes, kidney damage, bone damage, pins and plates in his arms, mental health issues, MRI/cat scans, daily injections, heart damage, C Diff, lots of other 'minor' things and last of all personality damage.
Prior to that, he was fit-ish, worked hard, was a good laugh and was fair and a good dad.
He was diagnosed (after several mis-diagnosis') with MM as he had broken his arm lifting something, so they investigated more because it was unusual.
The first year he had Chemo and all the other stuff associated with it. It was a difficult time but we kind of got used to it and although it's hard, not knowing how long we had left with him, he wasn't ill as such, we knew he had cancer but the treatment all went well, he didn't suffer too badly.
After his own stem cell transplant failed to work, he was given the option of a donor transplant. His sister very kindly offered and luckily, was a match. In August last year, 2008, he underwent the transplant.
He was due to be in isolation for 6 weeks, meaning that he was in a room to himself, in a cancer ward at Southampton General Hospital.
Things didn't go quite according to plan as he managed to go into septic shock, meaning his life was very much in danger.
He was transferred to Intensive Care where he spent 6 weeks. His bowels, kidneys, liver, lungs and heart were all suffering damage. His skin was peeling off, his fingers were like thick sausages. He has tubes coming out of him everywhere, it was very scary for him, and us.
We were told, each week, that he may only have 48 hours left with us. That was pretty heartbreaking and very difficult to come to terms with. I only told two people at the time - my close friends. I texted, rather than called as I was a mess. Now, I wish I'd spoken to someone....but what's done is done.
During this time Dad was very confused, mumbling rubbish and having disturbing dreams that he thought were real.
We knew something wasn't right with him. Apart from the body stuff! His speech was very slurred, he was making strange noises and most of the time we didn't understand what he was talking about.
After a few days, he was convinced he didn't need to be in ICU. He insisted he wanted a tv but it being ICU, he couldn't have one! So I went and got his portable DVD player for him. We chose a disc and he tried putting it in the player and changing the sound, but he couldn't do it. Later on, he was distressed about other things he'd thought had happened.
Looking back now, some of it is quite funny. But at the time, it was seriously worrying.
The nurses in ICU didn't know him like they did in the cancer ward, so they thought that was just him.
We tried telling them, over and over again, that's not my Dad/Husband....but they refused to listen.
In the end, we spoke to his cancer consultant who decided to do some brain scans.
It turned out, he had a swelling on his brain. They didn't know if it was blood or fluid. We were told that if it was blood, there was no way they could operate and he'd be like this forever.
If it was fluid, they could possibly drain it out or leave it to sort itself out.
Weeks later, we were told it was fluid and it had corrected itself. Those nurses soon started listening after that!
It was particularly painful that he refused to talk to me, or even look at me as he thought we'd had a row (we didn't, it was one of his dreams) and I wasn't talking to him. I was at the hospital every day for 3 months, yet he barely knew any of what was going on.
No one told him how ill he was, as the doctors didn't think he'd understand. He became restless and angry and because of the pressure his heart and rest of his body was under, they sedated him. Because of the other drugs and meds he was being given, the sedation had to be administered to exactly the right level....which was hard to get right.
He'd often wake up mumbling, then try to get out of bed. He thought he was fine and didn't need to be there.
One such time, I was on my own with him in ICU and he pulled himself onto me and tried to climb out of bed. For an ill man, he was bloody strong! That was horribly scary but we laugh about it now.
Other things happened, him being treated worse than a dog by some of the nurses...etc. But I won't go into all that right now.
Once he was stable, he was back in the cancer ward. He was bedridden but his speech and normality were starting to return. He couldn't remember anything of what he'd said or did while in ICU but we were just happy to have him stable and well, within himself. We didn't tell him anything of his condition as the consultant didn't want him distressed. He had realised he'd lost a lot of time though and was getting distressed, so in the end we had to tell him.
Time came for him to start getting up and about, he still had a long way to go but his kidneys/heart/lungs etc were improving.
The next stumbling block (literally!) came when he couldn't walk. He couldn't balance, he couldn't stand....nothing.
Slowly, after 2 months he was able to walk, with the aid of a frame and/or person. The physios came to see him 2-3 times a week to take him for small walks along the corridors. He wasn't allowed anywhere else as he was meant to be in isolation.
Soon, he was allowed home for a day.....a day turned into overnight, then it was 2 nights. They wanted to ease him back into coming home. He'd become kind of "institutionalised" according to the consultant and they didn't want him rushing into things too quickly.
Christmas week came and he was allowed home for Christmas Eve & Christmas Day but had to go back to hospital Boxing Day.
Boxing Day he was discharged :D
Since then, he got a little better. But then went downhill, rapidly.
The next blog will be the aftermath of all the treatment, the family rows/bickering, the daily struggle and basically the stuff no-one tells you about.
I'm not sure how my family/friends might take to this blog if they ever see it. I hope no one is offended or upset about this or any forthcoming posts. I just want to be honest and I know there are others out there, who have been through similar and know that the actual reality is far from what is shown in the media or what people perceive.
I'm sorry if this has gone on a little long. I have found it quite therapeutic to put things into words though.
Reading it back, it's more facts than emotions, but emotions can wait....there's plenty of time later, for me to tell you all about those! :D
If you've come this far, I thank you.
Kay Bee :)
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