Cancervive diary
The Big C01 APRIL 2008
GP SURGERY, BLOOD TEST
As I said previously - I had probs with getting blood out of these stupid veins of mine. Well I didn't obviously, but the phlebotomist did. I had to drink lots of water to get them to give any blood at all.
Now I'm back for the results. Sadly I didn't get them :-(
The samples were damaged and the lab couldn't do the tests because of it. I've asked our Resident Doctor X, and he said it is where the sample was taken using a syringe and then 'forced' into the vacutainers. It is there that the sample is damaged due to the pressure and the lab can't get anything from the sample.
So now, I've got to ring on Thursday and see what the sample results are - that reminds me I've got to phone them now! - and then see if another test is required.
I've also noticed I've been scratching a lot lately. There is NO rash but it is driving me crazy and getting worse. So much so that I am making myself bleed with the scratching everywhere.
Dr W said that as there is no rash it is metabolic and...wait for this....I might need another blood test! Can you believe it!
I've got some anti-histamines to take for 5 days and see if it solves it. If not, then it's another round of tests to find out why it is happening. There could be many reasons but we'll have to wait 5 days to see if the drugs work first.
All these things keep appearing out of the woodwork, sometimes I wonder when it will stop!
03 april 2008
sitting here, wondering....
I've just been checking the links on my Support Pages, trying to keep things up to date. It makes a bit of a depressing read really as so many of the sites have disappeared. Several people have died, their fight not being a successful one :-(
As a cancer patient, things go through your mind at different times. Sometimes the longer you survive the more you wonder ..... life is a strange one isn't it.
I was speaking to someone the other day who has had the 'All Clear' lucky person! He said that he now wonders if he will be clear forever, or will it come back? He wonders, when he has a pain, which before he would've ignored, now thinks "Is it the cancer back again?" and if he should contact his GP or go back to the hospital. I don't think the fear of this disease ever goes away. In some way or other it is always there.
One thing I have realised through doing my Macmillan course though, is that I now know a helluva lot more than I did before about cancer and side effects, and not just PBNHL either, but a variety of cancers. People come to me for information and help, not just cancer patients, but others too.
For example Sam recently left a message in my Guestbook about PICC lines. Not for cancer but for Raynauds Syndrome. So it's helping others too. It seems that the Furry Monkey reputation spreads far and wide. I'm pleased it's helping others and it gives me a real sense of achievement.
Cancer is not all bad, and there are some good points. I know if you have cancer and you are reading this you might think it's strange, but I wouldn't have met so many wonderful people or made so many good friendships without it.
Count your blessings, make every day count.... I know it sounds cheesy but it is meant most sincerely to you all.
Take care and keep smiling OK :-)
07 april 2008
pain management course, local hospital
It's take a long time on this waiting list but I'm here at last. So what is a "Pain Management Course" I hear you ask. Well from what I gather prior to going on it, it is an Introductory Session to see if they can help you further with your pain control through various other means.
I went along to this - after trying to get Transport and no luck. Apparently they can take me to the Pain Clinic but not Pain Management. Although Transport say it is one and the same thing, and I've also been to Pain Management through transport before. So it was a last minute hassle with loads of phone calls and me getting nowhere but stressed and needing lots of cups of coffee :-(
Anyway I eventually managed to find someone who could help me out, my lovely Auntie Marilyn!!! Although she was going out that evening she said she could squeeze me in which was a relief!
One thing I did notice at this event, was that after 30 mins or so, they allow you to get up and have a walk about if your legs and/or back is playing you up! I wish so many others would think of that. It's not easy with leg/back pains and twinges happen and it's nice not to have to 'sit and grin and bear it'!!
It seemed as though everyone else there that afternoon had back problems, either slipped discs, through surgery or just general back pains. I was the only cancer patient there, and I heard a few 'Ohhh poor woman' comments from behind me.
All my problems stem from the treatment for cancer - I now have more diseases and problems than I ever had before. However I am unlucky and a lot of people go on to have no more problems at all. So don't panic about it, thinking you will be the same.
We had several presentations about dealing with pain physically and also psychologically. It affects your mind as well as the physical pain.
What happens now? Well you have to request an Assessment whereby you meet a Physiotherapist and a Psychologist to see where they can help you. Here's where the next problem is, it is a LONG waiting list. My appointment is not until AUGUST!!!
Still I am on the list, and I am eternally grateful for any help I can get with the pain. The actual Pain Clinic has helped a lot so far which is wonderful. Obviously it's not all gone, but it has reduced which makes the day a bit better.
09 april 2008
princess alice hospice, esher
I really really look forward to my visits to the Day Hospice at Princess Alice. I am having 'Aromatherapy' which includes a massage. Obviously I can't have the full body one with the legs included as it is just TOO painful so I have a 'Lower Back/Back/Head/Neck/Arms' massage instead which is wonderful.
It relaxes me so much that I can almost forget the pains in the leg. Sometimes the leg reminds me and gives me twinges but by sitting down for this I can move it to stop it turning into cramp or worse.
I'm SO pleased I'm allowed to access the services here. My TENS machine (which I had on earlier today) is helping with the pain.
They do an amazing job and if you ever see an event on to raise money for them, or you see one of their shops - go and give your support! It all helps.
17 april 2008
pain clinic, local hospital
Back at the Pain Clinic again. I wasn't sure that Transport was going to arrive, it's always a worry with me! I've been let down so many times in the past that until they turn up I don't believe it! LOL!!
Well it's hospital transport of some description!
Believe me, I've been in loads of these but am not sure how far I'd get along the main road to the hospital...!!
We discussed the TENS machine I'm using and also the Pain Patches too. Heather (the expert!) also asked about the Syndrome I now have. I've been having a few odd things happening and I just mentioned them and she said they were side effects, or could be, of the Syndrome.
One of them is hair. Now don't laugh.....please.... :-(
I know that after radiotherapy hair can disappear in the area the treatment is done. I know that on my leg some hair has disappeared. However, I've now had some rather coarse dark black hair grow just at the front of the leg where some of the lumps are. It's not loads of it, before you ask. Just I've noticed that it is darker there. Heather said this is a known side effect of the Syndrome and wrote it down in my notes.
So what do you think then - this is me in the back garden late at night!?!?!?!
Only joking!
I also asked about the itching. I've had really bad intense itching lately. No rash though which is odd. It's so bad I've scratched myself so much I've made myself bleed in places.
The GP has given me some anti-histamines but it's not had any affect on it and I still scratch without always realising I'm doing it until I get told off!
If you have any ideas let me know!
21 april 2008
blood test (again!), gp surgery
Oh yes, another blood test. I was told it was a 'fasting' test so no brekkie and had to wait until 10am until appointment. Not a problem, I've gone a lot longer than a few hours - the annoying thing was - Sara told me it wasn't a fasting one when I got there. She said not to believe all I'm told every time! So how do we know whether it's the truth or not? Oh well, never mind.
Whilst there I also asked if this blood test would pick up anything about the itching, but sadly....well you know what's coming....it doesn't so it means making another appointment for one and to find out why.
I'm off to see the Consultant next week (the one who told me about my kidneys) so will ask him about it. Nightmare huh.
Anyway, Sara tried to find a vein...and could she find one? NO! She tried twice in both arms, and looked at my hands and also tried at the top of my arm but nothing. Then just as she was taking the needle out, some blood appeared so she quickly drew some out and put it in the test tube! Phew.
That was a close one. I thought I was going to have to go away and then come back again :-)
Oh yes I almost forgot - on my Macmillan course - guess which hospital we are going to visit? It was almost St George's then it was changed. Go on, I'll give you three guesses?!
23 april 2008
st george's day!!!
Well are you celebrating the Patron Saint of England???? If not, why not?!
Do you know, whilst on the way to the Hospice today I noticed that there weren't many flags out....the Irish celebrate St Paddy's Day and the Welsh with their daffs. So why not us? We used to! Remember when the football was on and everyone went England flag mad? Well why not continue it and be proud! WE ARE!!!!
So apart from the England Flag, there was something else I noticed. In fact, I noticed it last night. Do you remember me telling you I'm itching and now it means I might need another blood test to find out why. There is no rash, just this insane itching that is driving me mad.
It's got so bad now, that the itching and scratching has made me bleed. Unfortunately this happened last night, nothing major, one spot of blood, so I wiped it with a tissue. Then I felt it run down my leg, so I went to wipe it again, but there was no blood there. However there was a clear fluid leaking everywhere!
As Lymphoedema patient, and one who has read up on the Lymphatics and stuff I had an inkling this was Lymph Fluid. I wiped it up and did this for quite a while, then assumed it had stopped and went to sleep.
This morning, I got up, had my drugs, made sure the cats were OK and then went in to the shower. I thought after getting out, that I hadn't dried my leg properly and then noticed it was this fluid again. It was still leaking!!
As I was going to the Hospice today, I just put a tissue over it between my stocking and my leg in case it marked the stocking.
The Therapist asked me how I was, and I said I was OK apart from this odd thing happening with my leg and she asked what so I told her what had happened. She said could I wait a minute and then went out of the room. Soon she popped her head round the door and asked if she could come in with others. Two other ladies came in with her. One I recognised as the lady who had helped me with the TENS machine.
The other lady was a Lymphoedema Specialist and wanted to check out what was happening. I explained and she said it was Lymph Fluid. If it gets hot or red I need to go to the GP ASAP to get some antibiotics. Meanwhile they've given me some dressings to put on it to stop things getting in it and infections starting.
This is where a Hospice is so good, they have all the right people under one roof! It's not somewhere that you go to die. They have a Day Hospice and you can go for respite care too. It's a lovely place and not all doom and gloom - far from it - we have quite a laugh.
However I have been told I am a bad influence before, so make of that what you will....LOL!!!
27 april 2008
ferrari charity event
Yes, Furry did say Ferrari...!!! We re holding an event at Ferrari based locally! To be amongst those cars is pretty amazing for me, being a total petrol head! Of course at the same time we'll be raising money as well :-)
With a company as prestigious as this, you can imagine what it's like. Nothing is too much trouble and I'd like to say a BIG personal thanks to Andy for making it all happen so smoothly along with his team. Special mentions to Andrew and Graham too. It's amazing how working for a company that cares makes such a difference to the workforce.
I've worked in many places and chat to people from other companies too and I've not met many who really do like working for the company they work for - but all Ferrari staff seem to. I'd love to work there...imagine being surrounded by those cars every morning when you go through the doors - it'd be a delight to go to work!
Anyway, enough of my inane ramblings. Here's what was on offer...if your bank account is big enough!!! :-(
28 april 2008
dr d, ashford hospital
Luckily I got a lift here from a friend of mine who volunteers at the hospital. If I finish the clinic in time I might be lucky enough to get a lift back too. So first of all, because I am early I had a cup of coffee and a sandwich in the League of Friends cafe. I always check out their books too whilst there and picked up a couple (once finished they go back there too which makes money twice!). It's an odd one, I thought it would be quite interesting, and it is so far...but other people have gone "Oh what do you want to read about that for?" but it's kinda like the itch, you just have to read them! LOL!
Anyway back to the clinic where I was told my news last time about my kidneys. I asked that as I was SOOOOO early if there were any gaps could I go in earlier as I had a lift back if I was out in time. She said she'd try her best.
Well the first problem was......no notes.......she called them and was told that they had come up the Clinic but none were to be found. I asked if the Doctor had taken them in with him, but he hadn't. Despite several searches they weren't found. I then had to have the usual tests, including a urine test as well (at least it was easier this time - no mid flow thing to do!).
Eventually after someone coming up to check my notes and them still not being found, they were located...! Wahoo....!! They were bundled up behind someone else's notes - yes another patient had my notes attached to it. Oh well at least they were found. I'm beginning to wonder if it's just me. There is always something that happens - maybe one day it will all go well....I live in hope huh!
This time I didn't see Dr D, but instead saw another Doctor, a woman this time. She was excellent and answered all the questions I asked which was good. My first question was "I've not heard about the kidney referral, does that mean it's all gone away?"
Sadly her response wasn't what I was hoping to hear. Dr D was waiting for my results to come back and he was hoping that they would be better and I wouldn't need the referral. However......they are not as good as they were hoping for and I now need to be referred. My urine test also came back high in proteins (I think that was what she said).
So now I need to join another NHS Clinic - this time kidneys - and then have more blood tests (about 4/5 tubes I think) and a 24 hour urine test and also will need a scan of the kidneys. Oh what fun..... :-(
So now I'm waiting for another appointment. At least this time I managed to get a printout of my blood results so at least I can see where they are going downhill.
The Doctor also checked out my legs and asked me if they are normally that swollen and red. At the moment they are yes. No point in lying is there. At least the Lymph Fluid has stopped leaking now though which is good.
Well now the Cancervive blog is going in a new direction as well....what a journey this is turning out to be. Do you know, once upon a time, many moons ago, I used to be healthy....then I was diagnosed with NHL. Then my whole body started to fall apart.
Panic ye not though - I am th exception to the rule I believe....
30th april 2008
princess alice hospice
Sadly this is my last appointment here for Aromatherapy. Shame really as it's doing so much good to relax my poor old bones. Still I am now on the waiting list to go to the Day Hospice and can have access to other services which may help. Now why didn't I get this when I first had problems? It might've helped a bit.
Still better late than never huh. At least I'm on the list now and hope to hear from them soon.
Also Lisa and her colleague had a look at my stockings. Talk about shocked! They couldn't believe how I was given a generic stocking in place of the 'made to measure' because of the odd shape of the leg after the radiotherapy. Neither can I - they are so different. No wonder if hurt to wear them and I had to give up after being in so much pain with them.
I'm not asking for much really. Just someone to listen to me and help me find something that will help with the pain and the problems I'm now having on a day to day basis. None of this is my fault that's the annoying thing.
Once again I have to say, it doesn't happen to everyone so don't get worried. I am the exception to the rule. Perhaps my story will help you though if you do happen to find yourself in a similar position. Make sure the Consultants listen to you as early as possible - it might make things a LOT easier if they do. Mine didn't always :-(