Cancervive diary
The Big C01 January 2010 (argghhh!!!)
where's my spacesuit and jet pack then?????
Yes, I imagined that by 2010 we'd all be going around in spacesuits and with jet packs stuck on our backs. Maybe mine is stuck in the Christmas mail?!!!
It's strange isn't it. I've said this most years I think, but to still be here writing my 'blog' as they're now called amazes me. No one knows how long their 'allotted time' is do they but I often wonder how long mine is going to last. I'm not being morbid, just me being realistic as usual.
The longer time goes on, the more you wonder if you've 'cracked it' or is it just that you're on borrowed time?
The other thing I think of at this time of year is the people who I've lost contact with, for whatever reason. It's also weird to think of people who you believed were your friend, who you could trust and did trust, then they stab you in the back and you never hear from them again. Why are people like that? Is my trust radar out of synch? I've had a few people do nasty things to me over the past year, and for the life of me I can't think what I did (or didn't do!) to make them behave like that. So the only thing I can do is forget them, move on, and hope that they never have someone do that to them - or maybe they should (says the little red devil sitting on Karen's right shoulder?!?!?!?!). Let it go Karen, let it go...... :-)
So on to a lovely subject close to my heart...Bertie. Yes, he's with me every day and I promised I'd show you a photo of the rose I planted in his memory. So here it is.
I also bought a stone cat which has made a lovely addition to his memorial rose planted in his honour. It looks very peaceful and sits just like Bertie used to when he was doing his "Hover Cat" impression!
Oh yes, whilst talking about the garden, here's one of the photos of the chaos I was in whilst trying to re-do Mum's pots for part of her Christmas present. Have a look!
Nightmare or what? I did warn you! Mind you, it was nice doing it, but it took me literally weeks to do it all as I can only do a bit at a time. Also John has got the garage in a mess, so I can only get to the items at the front now!
If anyone feels like helping out,let me know and we can always do with help to do the things we can't anymore! The more the merrier, and I'll provide tea and biccies! Or even homemade cake if you're very lucky!!! LOL!!!
So what have we got to look forward to in the diary so far?
A Lymphoemdea appointment in London, good job, I need some new compression stockings. It's not that they are worn out, it's just that they are not the right size (legs change shape all the time with this) sometimes they are SOOOOO tight it hurts to keep them on all day, other days they are quite baggy and I look like Nora Batty! No comments OK!
I've got the Pain Management Clinic to look forward to. It's taken a year and a half since my last assessment to get there, so that should help hopefully. Although I'm a bit concerned that the Physio guy thinks I can get on the floor and do exercises, when I can't! I've only knelt down on my bad knee once since radiotherapy and it hurt like hell and I promised myself I wouldn't do that again! So we'll have to see how that goes. I've got to take a folder, a notebook, and a few others things like a towel and a pillow I think, so heaven knows what they're going to get us doing.
Mind you, I'm pleased to be on it. It might help with some new ideas of things to try to take your mind off the pains. Also I'm quite interested to see if there's something I can do that doesn't involve medication which gives me other problems. John says "It's a load of balloney" or words to that effect, but I'm open to trying anything. It's gotta be worth a go hasn't it.
One thing I do know, when I'm concentrating on something else, the pain doesn't actually go away, but it seems less - or doesn't seem so bad. John says "When they can prove they've had pain for the last 23 years, then I'll start to listen. They've been on courses so know the theory, but don't know how it really feels". I suppose he's right in a way, but then again they've been trained in different techniques so I'm willing to give it a go.
The other thing is everyone there is in some form of chronic pain, so we'll have empathy with each other and understand how we all feel....hopefully!
Keep your fingers crossed it goes well.
03 january 2010
something else i forgot to show you!
Me and my memory....or rather lack of it....!!! Tsk tsk.
Anyway I mentioned before that .... or did I .... thinking about it now I'm not so sure. Let me check. I was called in for a swine flu jab, and was a bit concerned about it as I'd heard good and bad things. I asked a few people if they'd had one and all I got was stories of how someone they knew had suffered when they had it.
I thought I'd go to an expert and called in ..... daa daa daa..... Doctor X...! If anyone should know he should. He said in my case he would have it, with all the problems I have it is better to be safe than sorry.
Mind you, this is what happened after I'd had it done.
It was extremely hard and painful for two weeks almost. It woke me at night as it was so painful. It was hot to the touch, extremely hard and painful. Still I've not had Piggy Flu since, so it's done it's job so far!
04 january 2010
dear diary....
Did anyone else see this programme with Richard E Grant? It's quite an eye opener, about how writing a diary affects not just you, but others too, specially if it's an online one or published (for e.g. John Diamond when he wrote "C", a good read BTW!).
Anyway, do you think a diary about cancer is intrusive into someone's life or is it useful if you are also a cancer patient? Does it offend some people? I know I've had some emails saying some really nasty things like "You write about cancer and you know nothing, you should just go and die!". Yes, I've really received ones like that - makes you wonder what sort of people are out there doesn't it. Also about the cancer jokes, there are warnings, if you don't like them don't read them, but people do and then complain loudly about it.
Bit like Mary Whitehouse complaining about the rudeness on TV (her opinion), why didn't she just use the "Off" button like others who don't like something. I don't watch something I don't like or agree with or if it offends me. Do you?
One other thing, as a lot of people know me, I can't always be totally honest with some things as it involves real people. So it's not always easy. As I said, I'll have to set up an anonymous blog as well.
It's a difficult one isn't it. I've had hundreds of emails and messages of support in my guestbook so I know loads of people read this and find it useful so I will continue. It also helps me, as I write my feelings down or things that have happened to me which others might find useful to do (like hints and tips on coping with chemo side effects etc).
Well I'll get off my soapbox again now. I might as well have one permanently put up for me huh! Instead of having the 'Plinths for the People' I'll have a "Monkey Soapbox" what do you think?
Oh yes, also Domi broke her cat flap door. It cost £40 to get a new one! Yikes! Bertie broke about six of them though so she's got a way to go to catch up with his record.
05 january 2010
i'm going on the telly......who'd have thought it...!
Yes, I'm going to be on the TV.
So what am I being filmed for? Well it's about long term survival with cancer, and the ongoing problems it leaves you with that you are NOT told about, well I wasn't told about all of them that's for sure!
I've asked Mum to confirm what I think I was told I was (memory probs as you know!) and she said I'm right, all I was told was: Hair loss, fertility and mouth problems along with tiredness.
On 4th January the BBC are running a piece on survivorship, revealing that increased survival rates have left many people struggling to deal with the long-term effects of their treatment.
Macmillan is releasing new data (worked out from a piece of research that appeared in the BJC in June) showing that 1.24 million people are living with a cancer diagnosis that they had at least five years ago. This is going to be combined with findings from a survey we carried out that showed the general public think that cancer patients should get better support when they finish their treatment and that many people do not know the long-term effects of cancer.
Results from survivorship survey questions by OMNI for Macmillan:
There was a really strong response on what sort of support people would expect: 94% would expect a full assessment of ongoing needs; 92% would expect to discuss potential side-effects and how to manage them; 91% would expect to have a named contact; 89% expect a personalised care plan; and 88% expect monthly checkups.
None of which are standard for patients finishing treatment so it’s good evidence to show it’s what people would want.
Macmillan believes there are some simple measures that can and should be introduced to support cancer survivors, including:
EVERYONE who finishes treatment should be offered a post-treatment assessment.
AS PART of that plan, people should be provided with information about possible consequences of cancer and its treatment.
THERE should be clear and swift access back into the specialist system if people’s health needs change.
GPs NEED to be enabled to support people living beyond cancer, in the form of a standardised electronic treatment record, which is easily accessed online during a consultation.
This is something that I support whole heartedly as you all know. I've never had so many health problems as I've had since my cancer diagnosis, and it seems never ending too. So I think others should be made aware of this, as do Macmillan.
Anyway back to the TV. Today the BBC came to our house to film, I said to the Reporter/Producer "Just don't film the mess as we're still clearing up from Christmas!" and she promised she wouldn't.
So they arrive with cameras, boxes, lights etc. Mum and John have gone out so it's just me in the house which in one way is good. (John say's he can hear everything I say, whether it's on the phone upstairs, typing on the keyboard, even opening the biscuit box for his cat caused him to launch out of bed almost, with a harrumph and striding off to the bathroom. See, just nothing can be done right by me can it????????!!!!!!!).
I did an interview where they asked questions, and I had to do a bit to camera (whoops now where did I pick that up from, hee hee hee!) about who I was and what cancer I had and treatment and the problems I now have etc.
Also we did some shots of me writing post-it notes (which I use by the hundreds - so if you'd like to offer me some for nothing Post-It company that would save me a fortune!!! LOL!!), then going up the stairs (which I try not to do too much but it's excellent exercise for the Lymphoedema which is good!), and also me getting/putting my drugs on the kitchen worktop. They were surprised how many I had, but I have to take them. Some of them I don't take now, but they were all in the same box.
I think, if you want to know and you ask, you should be told. Not the general "Oh you'll feel tired, but will get better and your hair will come back" but exactly the answer to your questions. Some don't want to know and that's their perogative, but for those of us who do, just tell us. I've found out more info on the internet (from official sites of course!) than I ever got given from the hospital.
06 january 2010
on the telly!
Yes, my debut on the television! Well not quite, I've been on it before, but it was a while ago!
I also did a radio interview live on Five Live with Nicky Campbell & Shelagh Fogarty and a spokesperson from Macmillan. Their angle was more the GP follow up and that patients are not getting the support they need from the NHS as a whole.
This is difficult as some GP's won't see a rare cancer more than once in their whole career, something like mine for instance. They are General Practice (as in the name! doh!) not specialists in one thing, so it's partly understandable. However, I've heard the "nothing to do with cancer" but you sometimes wonder and have to ask. After all, if you're not told what to expect what else can you do???
I was on the Today programme so I was told, and also online on the BBC News front page! Fame or wot! LOL!!!!
John said I'm more suited to radio, but then he is my brother, so I'll just have to assume he's doing it cos he's my brother! I've had loads of phone calls, emails, guestbook messages, texts all about my appearance on TV. Loads of support from people who agree that patients aren't told everything.
Also follow up isn't good. I now get checked once a year with my Oncologist, although I know I can ask for an appointment if worried about anything, but after my initial diagnosis, the Lymphoedema specialist asked me how long it was since original problems and after saying "Six months" was told "You're lucky, by six months you're usually dead". So if you're only checked once a year, it could be (and has been for many many people) too late. It's been growing silently for ages if you have no symptoms (like I didn't have any) and you don't know it's taking over your body, being a silent killer inside.
I don't expect scans and tests every month, phew, I'd never be out of hospitals, but say every six months to have a bigger check to make sure. I know the NHS is overstretched and it's not easy, but as the Macmillan survey has shown, there are a lot of very frightened people out there still struggling to cope with problems related to their cancer treatment.
Following on from my radio interviews/telly appearance today, I'm also doing an interview with Radio Surrey tomorrow. I used to listen to them all the time, but haven't for a while. I'm normally listening to my "Comes with Music" programme that I got with the phone I won late last year.
However, that software is cr@p and has stopped working. Great huh. So now I've resorted back to the radio on the PC.
Talking of PC's - a while back when I had problems, someone emailed me to say that they could help with creating a PC for me if required. In between I've upgraded to Vista and it solved a lot of problems I had.
However I've been thinking, my friend Lyn left me some money and it's still sitting in my bank account, so I thought I might treat myself to a PC upgrade. She would laugh at her money going on a PC when she was a Mac fan through and through! I hope you're smiling Lyn!!!
So what is the point of me putting it in here? Well, it's to find that person again! Sorry but my memory is useless as you all know, and I've lost some emails/addresses when I did the Vista upgrade. Now if you're reading this, please contact me when you have a spare moment, I need to talk PC's with you!!!! :-)
07 january 2010
more snow....and more to come....
Oh yes, we also had some snow overnight, well quite a lot of snow actually. It's taken over the news. Can you imagine that the whole country has come to a standstill because of the snow?
This was taken on my phone whilst at a Farmers Market in the snow.
Lovely it certainly is, but not for walking in with walking sticks believe me!
Poor birds - good job we have some feeders and a roof to put food on for them!
My poor plants (well Mum's Christmas present plants!) all covered in snow!
This is the bird feeders before I cleared the snow off them.
They've been eating everything I've put out so far...poor little things.
Talking of which, do you know what these are?
Sorry the photo isn't clear but I'll explain more below.
I've been putting food out for the birds for ages now, more so since the snow. Well, I put it out as usual, and then I heard loads of noise outside, so slowly opened the back door and this is what I saw! Loads and loads of bright green birds sitting in the trees and then flying to the food. Sorry the photo isn't too clear, but if you think you might know what they are let me know !
Before Christmas we went to Camberley to get a present for someone, and it snowed lightly on the way back. It took us 3 hours to travel a mile!!! How crazy is that? If people didn't slow to 2mph, but kept up a steady speed, especially where it's just wet rather than snow, then it'd be fine. We had nothing in the car to eat, it was cold, Mum and John have heated seats in front, I don't. I just text people as we sat there watching the idiots, even the ones in 4x4's couldn't cope! Arrgghhh what has happened to people.
I saw the "Grumpy Guide to .... etc" over Christmas, perhaps I should go on there. I thought people of "my" generation had common sense and were bought up with manners, but it appears it's all gone.
For example, I was looking at something in the supermarket before Christmas for a present for someone (better deal than electrical superstores!) and this posh looking woman in a long coat and fur hat literally knocked my trolley (which I was using to help hold me up!) and pushed me out of the way and when I said "Just keep pushing and I'll fall right over" after all the stick should give her a big clue huh. She then said "Well if you'd moved I wouldn't have to push" and people started to look.
Well I wasn't going to stand for this...no pun intended..... "Well, if you'd asked then I move when people ask politely!" and she just walked off with a huff!!! People of her age should know different and have manners to show younger ones what is missing, but they don't they are in fact, a lot worse!!!!!
My, do I sound old. John said I sound like an old person but I just get fed up with the lack of manners and common courtesy in this country now. When did it all change? I was bought up with manners and to be polite, so were others of my age, but it's all gone.
Anyway, perhaps my New Years Resolution should be to just let it all go over my head, and let them go down into the gutter, I know I'm doing the right thing that's the important part. I wonder how long I'll last before I say "What is wrong with people these days?" LOL!!!!!
Let's see shall we........just don't hold your breath though OK!!!!! I have a feeling it won't last long, this resolution!!! Hee hee hee!!!
BTW I'm trying to upload some photos I've got on my phone/camera, but the software isn't working at the moment. I'm hoping the upgrade I've done on the software will clear it when I close and reopen the PC tomorrow. I'm not going to do it today as I'm quite shattered. Will try again tomorrow.
I'll catch up with you soon about the Pain Management stuff, when I can remember to check the diary for the dates. I can't remember anything lately, no word of a lie!
08/09 january 2010
more painful mouth problems
Yes, it's happening again. I don't remember to put it down here every time but will try. I'm not sure you all want to know when my mouth hurts, but it helps to remind me how often it happens so I can tell the Dentist when I see him next.
11 january 2010
1st session of pain management course
Not sure what to expect here. I've had loads of paperwork to fill in and questionnaires about the pain and medication and how I feel about it all. There was one question they asked which went "Have you ever considered suicide due to your pains?". Now how do you answer that?
If you say yes, then you are a suicide risk. If you say no, you are in denial about it. I'm just going to answer the questions honestly. Then they know how it feels and what problems it causes me on a daily basis.
It was freezing cold in the room and I didn't take my coat off once. Apart from the cold, it was very interesting to meet other people also having problems.
We are going to deal with three different aspects of pain. There is a psychologist, a physiotherapist and a Nurse there. We're going to learn Relaxation Techniques, the psychological side of dealing with pain, and exercise with pain.
There is more paperwork and we have 'home based tasks' to do (AKA homework!). It's interesting and I'm enjoying it so far. The course is quite involved and is a big time commitment but if it helps I'm willing to give it a go.
I suggested to John about it for him and his pain, but his reply went something like this "If they can show me they've had real pain (like me for 23+ years) and can honestly say how it feels then I'll give it a go, until then, I'll just carry on as I have been". Not much chance there then!
I'm open to ideas to see if they will work or at least help with the pains I have each day and night. They've even given us ideas on how to improve our sleep and a Relaxation CD to try.
I already have a few, one from my friend Lyn, with angels on it. It's a nice CD and has helped before so I've got it out again to try. Sometimes we stop doing things for one reason or another. This reminded me of it!
13 january 2010
2nd session of pain management course
Since we've had more snow, this session of the course has been cancelled. We've only had session one and it's off already. Oh well, I can catch up with some other things I need to do for now.
It's not as it there's no catching up to do!! LOL!!!
18 january 2010
3rd session of pain management course
Boy does time fly by quick when you're having fun! Seriously, I've been reading the course materials and it's got me thinking about a few things. Things that will hopefully help. I like the idea of distraction techniques and use this often!
We also did some Postural items, checking our posture. Sometimes pain makes you sit in a certain way where it doesn't hurt. So for our home based task we've been keeping a "Task Diary" and it shows where we're going wrong. My problem has always been pacing. If I'm having a good day then I try to do as much as possible, then collapse and be in pain for a few days afterwards. Obviously this is not the best way to do things, but it's hard to get out of that routine when you're having a 'good day' at the time!
We also did "Understanding Stress". Now I know where most of my stress comes from, but unless the "Lottery Fairy" grants me a huge big win, then there's not much that I can do to relieve the stress. I get headaches quite often lately, but I've been using the wonderful present I got at Christmas which relieves it without resorting to painkillers and medication which is good for my insides! It gets enough problems as it is thanks!
This time, the lights kept going out in the room we were in. It was also still cold. Can you believe I've still not taken my coat off yet!!! So much for the local Council caring for it's people. LOL!
19 january 2010
still can't do anything right...what a surprise...!
Well as things were ticking along OK'ish I then get it in the neck again. Nothing new here as you know but it gets to me.
Anyway I've been using the distraction techniques to deal with this, so it's not just pain it's good for. This is a different sort of pain...one in the neck springs to mind!
It'll never change and I should accept that, but sometimes it's hard to.
20 january 2010
4th session of pain management course
Well I've still got my coat on to start with.
Then before I'd even got to the room I tripped over a mat on the way in. It jarred my whole body and I had a headache for the first half of the course. Good old painkillers always to hand helped with that.
John said "Hey, you make everyone else going in here look good as you're so decrepit!". Nice huh. You can always rely on him for support.
We did some exercises and I could do some of them, the more complex ones you do laying down obviously I can't do with my poor 'ole bones! I did have a try at most of them though. Bet I'll suffer for this in the next few days!
22 january 2010
1st year anniversary of lyn, and happy birthday to carol
That year has gone SO quick. Quick in one way, and so slow in another. It still feels like I was visiting Lyn in the hospice yesterday, not a year ago. I sent a card to her Mum and Dad to say I'm thinking of her and them. I think of people I've lost most of the time actually but it's more prominent when it's their birthday or an anniversary or Christmas.
I hope you're laughing Lyn, and shouting at me because I'm going to buy a PC with some of your money! :-)
BTW, I have been suffering with the pains post exercise!!! I thought I would! Pacing is still a problem with me. I think it always will, unless I have no external stress around me and don't have external factors that cause other problems. Not much hope of that then....hmphhhh!!!!!!
25 january 2010
5th session of pain management course
No, it's not so cold now, but I'm still not taking my coat off. Why? Well this time I have a leak in the ceiling above where I'm sitting. I like to sit on the end so that I can move my legs around and the leak was right above that chair. Typical.
I just hope the ceiling holds up and doesn't come down totally. The council charge high Council Tax, so why is this such a cold, wet, draughty place?
A good thing about this course is that they let you get up and walk about or just stand and move your legs. They know pain causes problems like this and it's good to know we can do it without comments or being looked at strangely!
We've also done Autogenic Relaxation now too. I didn't realise there was so many techniques. Some work for me and some don't. Some I've already tried along the way and it's good to remind me of that and I can try them anytime I need to. I find Relaxation helps to get to sleep. It doesn't help when I awake so many times in the night, but it helps to get me there in the first place. By keeping the "Sleep Diary" I've realised how many times I just DO awake in the night!
Also we've been working on "Changing Negative Automatic Thoughts". Now this is OK if there is just one of you, but when there is more in the household and there are external influences, then it doesn't always help. I've been putting thoughts to the forms we've been given though and it's interesting to see patterns arising. From there you can work on them, assuming there are not always external influences causing problems of course!!!
27th january 2010
6th session of pain management course
Drugs! No not that type. This section was all about the drugs we take to help the pain. We had to call out some of the medications we're on and mine were one of the strongest. Mind you, I had quite a few strong ones listed and one they didn't have and no one knew much about it apart from me. It might help some of the others there though so they took notes about it and asked me.
Also we must stop talking about "Our drugs" when we're in public earshot, people think we're all druggies! I know I have a habit of saying "Must take my drugs and put my legs on" and if it's in earshot of people who don't know me, I get funny looks!
We had indepth discussions with a Consultant from the Pain Clinic, someone who I don't think I've met before, but he's a very knowledgeable man with regards to pain. He's helped quite a few people on the course which is good to know.
We also did "Planning and Prioritising" but again, that's not always possible with external factors around. Of course, it helps if people talk to you, but sometimes those external factors don't. That doesn't help either and causes other stresses. At least John is able to get out, whereas I'm stuck here a bit more. There is always the retreat of other things I can do though.
I've been watching one of my Christmas DVD presents I got. "Gavin and Stacey", now I know it's the last episodes, but I've just caught up with some of them, and now can watch all of them, including the Christmas specials too. Great DVD and loads of giggles, so it's relaxing at the same time. Must stop clenching my teeth too, I can feel myself doing it now after a 'strained conversation' shall we say.
Oh yes, the next part of the course. We have to work on two goals. One to help us with our pain maybe, the other something totally for 'us' which we enjoy. Now I bet you know which boxes I've completed first and which one's have loads in and the ones that don't...LOL!!!!!
28/29/30/31 january 2010
more painful mouth problems
I've had this continuously now for four/five days and it HURTS!!!!! More painkillers to take. Still it helps and numbs the pain a bit.
When I've got a moment I'm going to see the Dentist again and see if he can see anything there after the last scan saying nothing. It's confusing. I've had three/four lots of antibiotics and nothing.
I'm also in the Dog House again. I seem to spend most of my life here. I think I'll rename it "Karen's House" instead.
If you know the winning lottery numbers, then please tell me!!!!!!!
MY NEW YEAR RESOLUTIONS - better late than never - LOL!!
Here's some ideas I've thought of so far. Nothing too major or drastic or it just won't get done will it!!!
- Let it all go over my head whatever it is
- Try to ignore all the sly digs and sarky comments
- Have some "me" time regularly
- Learn a new skill regularly, even if something small
- Catch up with Furry Monkey more often (hopefully this will happen!)
- Find something good in each day, even an emailed joke makes me smile! So get sending them to me to help with this resolution!!!