Cancervive diary
The Big C07 MAY 2009
ASHFORD HOSPITAL – EYE CLINIC (MUM)
At her last check up they said that there could be diabetic changes in her eyes so she was advised to go the clinic for checks. Luckily our friend Anne volunteers at the hospital and could give us a lift. As she would be having drops in her eyes, and could be a bit wobbly it would be best if we could get a lift.
There was a LONGGGG queue in the clinic, but we finally got the top of it. Well, we thought it was, it turned out to be to have the drops put in and then go back and wait to see the Consultant. I was surprised at how bad her eyesight had gotten. I could see quite a few lines that she couldn’t, but then again, she is a lot older than me!
I had taken a new book with me, I’ve lost interest in reading at the moment, not sure why. I have to keep re-reading bits to remind me what it’s about, perhaps that has something to do with it. Along with other memory and cognitive problems, another side effect that hasn’t gone away. They don’t tell you about all of them do they.
I wish they had.....at least then you’d be aware of these things happening.
I keep thinking of my friend Lyn, who died in January. We didn’t see each other all the time lately due to our problems of getting around and different appointments, but I miss her now more than ever. They say that time heals, but it’s all the things we were going to do that we’re missing out on. Or something I see in the paper or on the TV that she would’ve liked and then I remember.
I know this happens to everyone, losing someone but she was way too young to die. This disease is really crap and I make no apologies for saying that. It’s just how I feel at the moment. I could cry for England sometimes but it’s not going to bring everyone back is it.
Why am I still here I ask myself quite often. How come I’m still fighting this every day and others don’t make it? They tried as hard as I am against it so what is the difference between us that makes one of us die and one of us still be here?
I hope you don’t all think I’m being morbid, but these thoughts are in my head and I can’t deny it really. The longer it’s stable the more I sometimes wonder....when will it become unstable again?
Lumps and bumps and pains you previously didn’t worry about, now seem to take on bigger proportions and you wonder....is this it...?
09 MAY 2009
A NICE SURPRISE...!
Carol, a good friend of mine, rang me up last week (I think it was last week anyway!). Useless memory as you all know!
Anyway she asked if I’d like to go to the Theatre?? Well, of course I would!!! It was only on for a week and she had provisionally booked tickets. Firstly it was on the same day as Mum’s hospital appointment but she changed it when I said that. Then Mum said “Oh I could’ve gone with someone else” – but by then it was too late. We had tickets in the last performance on the Saturday matinee. It was going to be lovely!
Oh, in case you’re wondering it’s “Singing In The Rain” and it was very very well done. So energetic with all the singing and dancing, with so many costume changes and it had me smiling from the moment they started singing. A big grin on my chops all the way through! We both enjoyed it and said we’d have to see what else is coming along.
Mum and John say it’s not their thing but sometimes I get fed up with asking and the answer being no to everything I suggest. Of course, if John suggests something then she goes. Hey, I’ve not to let it get to me.
Sometimes I think that what is in my head is the perfect world, and of course the real world isn’t like that. I like to do things, even though I know it will make me tired and it hurts me with the daily pain I have, but I don’t want to not do something. It feels like you need to pack in as much as possible...you never know do you. Again, it’s the uncertainties, but you have to live with them.
Most of the time, things are OK, but when those ‘dips’ come along, it’s hard to get out of them and it feels as though nothing is worth it. Does anyone else feel like that sometimes?
Oh ignore me, it’s just one of those strange times when nothing seems right. Everything is going against me and I’m fighting a losing battle. I can’t do anything right and everything I do, is wrong. No matter how hard I try. Why do I bother? I don’t know...why do I?
18 MAY 2009
GP SURGERY (ME AGAIN!)
Yes, another check up for different things.
I said about Mum and he said it confirmed what he thought. He also said that the waiting time is not from when you see the Consultant, but from when you are referred to see him! I didn’t realise that, so that means Mum is further up the queue than we thought!
When I got back, we’d just sat down for a drink, when the phone rang. It was the hospital and they said they’d sent out a letter confirming the date for her operation would be the end of June. So that was great news! Then the lady (whose name was Sue) said that the surgeon had a space on his operating list for 28th May and would she like it (Mum doesn’t like talking on the phone to most people and passes it over to me – see I do have a use sometimes – it’s just that it’s not often and I don’t always realise it!).
So that sounded even better! She said the pre-op would also be bought forward, “Oh no”, I said “it’s not this week is it?”.
“Well, it would be.....tomorrow....!” she replied.
“Yikes” talk about short notice! Still I asked Mum what she thought as she normally is the total opposite of what I would say and she said “Yes that would be OK if I can get there”. As if we wouldn’t go. We’d have to find a way, even if it meant an expensive taxi fare.
So it was all arranged, we would go in the next afternoon and the paperwork would be there for us ready. We would have to allow 2-3 hours for the assessment as it involves lots of things to be checked.
I phoned John to let him know and he said he’d see what he could sort out. I said I could go with her, and he wouldn’t have to take time off that way. However when he came home he said he’d got the afternoon off and could take us. It does make life easier I suppose and he knows more about knee ops than me. As he said “You don’t know everything you know”.
I don’t profess to either, but it appears that he thinks I do. I can’t help knowing a lot about medical things and when I suggest something it is only done to help, but it’s being taken the wrong way a lot of the time lately so again it’s something that I wonder why I bother. Why get more grief and aggro for trying to help? I really should try not to bother and just shut up, but it’s in my nature to help, that’s the type of person I am, but a person can only take so much rejection and aggro for it, before they just give up.
So give up I try to do, but it doesn’t always work as I forget and try to help. If there was a way of permanently stopping myself from doing it I would, why put myself through the aggro and grief every time if I could stop it.
If only this ‘world in my head’ was real and I could escape into it.
19 MAY 2009
PRE-OP ASSESSMENT APPOINTMENT
We’ve arrived at the hospital and luckily in the paid car park, there is one space left. Normally you have to ride round for ages to find a space. How lucky is that?
Finding our way to the right department is a bit confusing as the signs say two different things but we get there in the end. We book in and sit down, and are advised that there could be a wait. Nothing unusual in that then.
Finally Mum’s name is called and we go to the consulting room. It then turns out that there is only room for two people in there apart from the Consultant so I have to stay outside. I go out and get back into my book – it’s all about a pathologist in a hospital, and I’m reading it in the hospital waiting room! Ironic really! I get a few strange looks.
After a long wait Mum and John come out and we have to go to the x-ray department for an x-ray. It’s all done fairly quickly and I don’t get to read much more of the book there.
We have to fill out a huge questionnaire and Mum doesn’t like filling them in, so it’s something I get volunteered for – hey, I can do two things right! So I start to ask the questions and you know when everyone else is listening and you can tell...well that’s what it was like. They were all listening and we knew it.
Mum listened and sometimes I had to repeat things more than once, then the answer was “John, what do you think?” and he said it’s not me, it’s you they need to know about. She didn’t seem to grasp that idea. She even asked me, and I’m not asked that often! I said the same thing. We also said you need to be honest, so if it hurts just sitting then say so, they can’t tell if you don’t tell them.
She seems to have gone into ‘old lady mode’ all of a sudden. She does the same things that she used to moan about Nan doing/saying – how’s that for a changearound!
20 MAY 2009
I’ve been asked to review a book about “Chemobrain”. It’s quite ironic really as I read the first few pages then had to go back and re-read it as I couldn’t remember it. It suggests that your family reads it to understand things more and realise what they can do to help. I asked mine if they wanted to and got a really negative response. John said “Why read it when we know you do it and it’s not going to change”. That’s not the point is it, I know it won’t change, but I want them to understand how annoying and frustrating it is. They need to understand that I can’t help it and it’s NOT my fault. Also by being a bit more 'accommodating' if they know it has affected me, then it would stop some of the aggro I get too. Now that WOULD be nice!
There is more and more research being done into Chemobrain which can only be good news. I asked my Consultant about it several times, and she said “There’s no such thing and it’s not due to the treatment". How soul destroying is that then? It’s like a slap in the face, that you know this is happening and it’s not being acknowledged.
Again, this is an American book and they seem to understand this more than the Doctors in the UK. Perhaps they should listen to them, or put this book on their reading lists.
I hear of this symptom from loads of people and it is REAL, they just need to listen and try to help.
I’ve still been getting my sore mouth again in the same place. It seems to go then come back again but never truly completely going away. I’ve also had a sore shoulder and a sore eye. One thing after another huh.
Not sure why I’m getting all these things, perhaps I’m just feeling low and it’s catching up with me.
Well I’m going to stop here now, Bertie is here, purring away. He wants ‘Bertie cuddles’ and it’s nice to feel wanted, even if it is with the cat.
26 may 2009
what the hell.......???
Why oh why are the Koreans setting off nuclear bombs? This is the cause of many many people suffering cancer (Lymphomas, Leukaemias etc) and Rheumatoid Arthritis, including second generation.
Does this sound familiar to you? Well, if you've been reading my blog and know all about me and my family now....you will. Yes, it's me and my brother to a T...!!!!
Our Dad was at Hiroshima in the front line when the nuclear bomb went off. My brother did lots of research when he was diagnosed with Rheumatoid Arthritis and then I did loads when I was diagnosed with Primary Bone Non Hodgkins Lymphoma. I asked numerous consultants. Some said "Yes, you are right - there is a connection there but you will never get anyone to confirm that for you in writing as it would open the floodgates for compensation claims against the goverment".
We don't want compensation, although some extra money would be nice. We want to know what has caused these illnesses. There is no Rheumatoid Arthritis or Cancer in our family history - we are the first.
I was advised by one Consultant to contact the American Veterans Assocation as they have done more research than in the UK and are further down the line with the government.
Most people have a reason why they got the cancer (it's in the family, they smoke, or worked with asbestos etc). I have no reason and there are too many coincidences there.
So, what the hell are these people doing this for? The world is supposed to be improving with regard to weapons of mass destruction, not getting worse. We are only going backwards if this happens.
Don't forget this is a personal opinion only.
27 May 2009
something to cheer you up - naughty but nice...!
5 MINUTE CHOCOLATE MUG CAKE!!
- 4 tablespoons flour
- 4 tablespoons sugar
- 2 tablespoons cocoa
- 1 egg
- 3 tablespoons milk
- 3 tablespoons oil
- 3 tablespoons chocolate chips or (optional)
- A small splash of vanilla extract and your favourite tipple
- 1 large coffee mug
Add dry ingregients to your largest mug and mix well.
Add the egg and mix thoroughly.
Pour in the milk and oil and mix well.
Add the chocolate chips (if using them), vanilla extract and a drop or two of your favourite tipple (not sure OJ will work with this LOL!) and then mix again.
Put your mug in the microwave and cook for 3 minutes at 1000 watts (high).
The cake will rise over the top of the mug but don't be alarmed!
Allow to cool a little, and tip out onto a plate if desired.
EAT!!! (This can serve 2 if you want to feel slightly more virtuous!).
If your feeling very very naughty, cover liberally in Bailey's Irish Cream.
And why is this the most dangerous cake recipe in the world?
Because now you are only 5 minutes away from chocolate cake at any time of the day or night!
You are going to tell others about this now, aren't you ... :-)
28 may 2009
hospital again...not me though!
Well we haven't heard anything from the Hospital about whether Mum has a bed or not so we'll just turn up at 7am as per the letter. Yes 7AM!!!!!
UPDATE:
Well that was amazing. Within the space of just over an hour, she had been booked in, had the lovely hospital gown on, seen the registrar, anaesthetist, the physio, the surgeon and was on the way to the Operating Theatre!!! Amazing huh.
It was all last minute as there was a gap in his operating list so when it was offered Mum took it. She was told of the increased risk due to her blood clots on the lung in 2007 and being diabetic and her age, but they didn't say it couldn't be done. Just have to be more observant and have regular checks on obs.
ANOTHER UPDATE:
We went back in the afternoon and she has had the op, and is sleeping a lot of the time. She comes round occasionally but doesn't seem to be aware of too much, let alone who I am!
She has oxygen as she was hard to bring round and had a bit of breathlessness. Nothing to worry about they say and it all went fine so that is good.
I won't have much time to go on the net (now that it's working better after all the hassles with a certain 'media' company!). It's hospital appointments for us, then hospital visits, feed cats and sleep mainly! LOL!
I will be logging in when I can so will update this when I have a mo.
Just to let you all know that it went well and she is recovering fine now which is good news. Of course John can give her hints and tips as he's already had a knee replacement operation himself.
Speak again later!