Cancervive diary
The Big C01 FEBRUARY 2010
7th PAIN course session and cAN YOU BELIEVE IT'S FEBRUARY ALREADY?
No, neither can I either! Amazing how fast it goes by isn't it.
I've got more mouth problems, it seems to be almost every day now and it's awful. It's difficult trying to fit in a dentist appointment at the moment with the pain course and also other hospital appointments, and when there are three of you it's even more so. Still I will try to ring them and get one in the diary.
I need to find out if he can help me with getting rid of this pain. I know I've already had four lots of antibiotics and it's done nothing. I've had a CT and an MRI scan and still nothing. The only thing I did find out is that I've got recurrent sinusitis and also funny bones in my head (congential abnormalities). No comments please!!!
So I really WILL make an appointment, it's at the very TOP of my "To Do List". It's never ending at the moment.
Pain Course again, I have to take painkillers in between the sessions to cope with the pains as usual. We look like a load of druggies when we all get our tablets out at the table.
02 february 2010
john went to see the doc....
He went, but he forgot to ask about the colour of his leg. I wondered if it might be cellulitis and it's worth asking. He forgot though and it was my fault I hadn't reminded him.
Thing was, I thought his Doctors appointment was 03/02/10 and Blood Test today. Oh well. He's seeing the Consultant this week so can ask him instead.
Had problems getting my tablets recently. The Doctors wouldn't sign them off for some reason. The pharmacist said "They said it's not on repeat and you haven't had it before" or some such nonsense!!!! I mean, it's a CD and has to be handwritten and also is not on repeat therefore. As well as I've been on it for ages, as long as I can remember, and they should know.
One thing else they should know, is that you shouldn't just not take it, it has to be withdrawn slowly. I ask you, how stupid. I had to go back to the chemist again after waiting more days in between. I'd already left it over a week after the last problem.
I don't know if it's the Doctors or the Chemist now. When we first went there, they were great, then the original pharmacist left. Then it's been chaos since, so perhaps it's the pharmacist.
PS. Update on tablets - had to wait nearly 1 hour to get them, but I got them, and also John's dressings. He used to get one months supply at a time, but now the GP won't sign off more than 1 week at a time.
Do they not realise that it is causing them more paperwork, more time wasted, more hassle, more costs on their budget doing it that way? No, it appears not. Ours is not to reason why. We just have to request them every week, and the Chemist has to put in the prescription each week, and do it each week. It costs everyone more time and money, and more hassle on our part.
That's the funny thing (well it would be if it wasn't so ironic!). When I was in the chemist, their 'radio' said "We can order your prescriptions, go and go them, all ready for you to collect! Less hassle and stress for you!". HA HA HA HA HA!!!!! I think not.
When you've waited an hour nearly for something that's crazy and not less stress and hassle for me. Several customers walked out as they got fed up waiting. One poor guy only wanted to buy a razor blade and gave up waiting for someone to take his money. I'm beginning to see a pattern here, are you boys and girls??!?!?!?!
My course has had more of an effect than I realised!!!! LOL!!! Good job I can laugh huh!
03 february 2010
8th pain course session
Another good session today.
Course was good though, didn't have Psychologist there today which was a shame. Am enjoying thinking more about things and how our brains sort things out. Also seen lots of patterns in mine which explains a lot. Also means I can't solve them easily either.
I live in hope!
More exercises, I couldn't do them all, specially the lying down ones, but he said it was good that I was giving them a try and I said I could modify some and do them on the bed. Also doing some standing up instead of sitting down. It's all exercise and helps I think.
I did some dinner before I went out, had to sit down as usual to do all the veggies etc but it was done. All that had to be done when I got back was serve it up as it was only salad to go with the main course.
Thing was when I got back all Mum had done was take the tomato out of the fridge, not even cut it up!!! Auntie Rita was there so she helped me do it which was good as I was shattered. It niggles me, it's not difficult and you can even sit down to do it, I do, but nothing was done.
More mouth problems, a daily occurence at the moment.
05 february 2010
at the hospital, with john, not me....yahooo!!!!
Yes, it was John not me. It was for his leg. We got there with minutes to spare. It takes him ages to get ready due to the leg and the problems it causes.
After logging in with Reception, you go round the corner to another Reception and log in there too. What a waste of time and faffing about!!!! (Hope that's not swearing!).
Anyway we waited a little while, not as long as I do at other hospitals/doctors. It was a total farce in my book!!!! We were in there less than 10 minutes and all he said was "There's not a lot I can do until you see your other Consutlant".
NOW, they are BOTH in the SAME hospital. So why DON'T they TALK TO EACH OTHER!!!!!!!!!!!!!!!!!! By email, phone, text, internal mail, whatever. Just talk to each other, stop faffing around (that word again!) and sort it out. My poor brother has been in pain with this for two years now and it shouldn't be happening.
So as his other consultant has cancelled his appointment three times now and it's now July, when it was originally December, it means another six month wait for John. Stupid or what?!?!?!?!
We went down to the other Consultant, but he was busy (as we assumed) but John spoke to his secretary. All she is going to do is wait until she gets a letter from the other Doc and then see. Arghhhhhh!!!!!!!!!!!!!!!
Meanwhile poor John has to be in all this pain and no one seems to want to help. It also annoys me that he'll have a go at me, and even ask me to cut his leg off sometimes, he's in so much pain, but doesn't say much to them. When you have a chance, take it I say, but it appears we're totally different.
I've realised that the only person who can help me, is ME, and it's me that has to do things, even if it makes you unpopular for a while with some people in the medical profession. I'm sure that they would do the same if it was them in that position.
So now, we have to wait again, and wait, and wait, and wait.
Wake me when something happens!!!!!!!!!!!!!!! I'm not holding my breath BTW!
06 february 2010
more mouth problems....just catching up with dvd's!
I'm having some "Me" time this evening. The course said we should have more me time, specially as I can't see any on my time diary when I've filled it in. So I'm going to.
Am also waiting for something to arrive that will help me with my card making for the cancer charities. I love doing them when I get going, it's just not easy on a picnic table doing them.
We have some spare space but it's filled with clutter from a certain person. I'm saying nothing. So I've got to work around it. It's a real pain and makes it difficult, but it's not going to stop me, one of my goals you see. Got to try haven't we.
As I said "If you see the Lottery Fairy, let me know where she is!!!!".
Night night -x-
07 february 2010
so what's on the reading list now?
I've been reviewing some books for Macmillan Cancer Support, and here is one that just jumped straight out at me, and of course I had to read it first. It puts in print exactly what I've been saying since chemo. Chemobrain does exist and it causes no end of problems sometimes.
I'm beginning to think I should get shares in Post-Its....!!!
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08 february 2010
review tests at the surgery
I had a comment on my repeat prescriptions saying "Review Required". So after phoning the Surgery I found out I was to have a Blood Test/Blood Pressure Test and take in a "Sample" for analysis. This was to be followed up by a Review with the GP a week later.
I'd already booked this so now was the time for the tests. Dottie (our phlebotomist) took the sample of blood (well a few bottles actually!) and then took my Blood Pressure.
I think some of the course is working, as my Blood Pressure has gone down and she was quite pleased! Lots better than it has been recently so that's a positive.
I was surprised as we've had 'tense' time of it lately shall we say and thought it'd be way up in the sky. So that was brilliant news for me.
Now all I've got to do is wait for a week and see the GP for my review of how everything else is doing. Fingers crossed!
11 february 2010
just what I need to cheer me up....
I got this from a good friend called Rosa in my email today. Thanks Rosa! Back to you my friend (via email of course LOL!).
HUG CERTIFICATE FOR A FRIEND
If I could catch a rainbow
I would do it just for you
And share with you its beauty
On the days you're feeling blue.
If I could build a mountain
You could call your very own;
A place to find serenity,
A place to be alone.
If I could take your troubles
I would toss them in the sea,
But all these things I'm finding
Are impossible for me.
I cannot build a mountain
Or catch a rainbow fair,
But let me be what I know best,
A friend who's always there..
15 february 2010
10th pain course session and a right pain at the doctors!
First of all, a Doctors appointment for me. I had a 'comment' on my repeat prescriptions saying "Review Required". Nothing like good communication huh - and that's nothing like it....ha ha ha!
So off I toddle to the Doctors, we're a couple of minutes late as John is not much good at timekeeping. He can get up at 8.00am or earlier but still not be ready by 1pm in the afternoon!!! As someone who likes to be out and get things done, then come home and collapse with a cup of coffee it's annoying at the very least!!!
Our GP's now has a "Self Booking In Scheme" where you tap on a screen and book your self in. However I was confused as it said I was booked for the Phlebotomist not the GP. I've already had a Blood Test/Blood Pressure Test and took in a ahem...sample as requested.
I then went back to the Receptionist and asked why the name was wrong. She looked at the screen (in a Little Britain kind of way - seriously just like that - I was waiting for "computer says no" but it wasn't quite that but very similar!!!!!).
She said "You're booked for a Blood Test". "Yes, once" said I "then for a review with GP a week later which is now".
"No, it says Blood Test, are you sure?" "Of course" said I, "I specifically asked the receptionist booking it to confirm the Doctors name, date and time of appointment to make double sure as we've had problems here before". (More than once thought I in my head!!!!).
So even though it's THEIR error and NOT mine, I, the patient, am the one who has to suffer as they can't fit me in for another week. A WHOLE WEEKS WAIT AGAIN. This is SOOOOOOOOOOOOOOO ANNOYING. So much for staying calm and lowering my Blood Pressure huh.
No matter what I said, it didn't have any effect on her (does it anytime with Doctors Receptionists? Not that I've found, a whole new species sometimes!!!).
So I was mega annoyed, nothing I could, the old......ahem.......person wouldn't listen to me.
THEIR ERROR - PATIENT SUFFERS!!!!! This is not the only problem we're having with this Surgery. I've had my medication refused before and been left with one tablet to take before withdrawal symptoms happen and a visit to the hospital is called for.
They know what drugs I've been taking for years and that they are very specific, then ask stupid questions that they should know the answer to very well. ARGHHHHHHHHHHHHHHHHH!!!!!!!!!!!!!!
They've also refused to sign off John's dressings for one month supply. Now in their own interests it would be easier, and save money, to issue one month supply. We used to be able to get two months, now this stupid arrogant Doctor (and he is believe me - and others say so too!) decides in his infinite wisdom to issue just 100 dressings which lasts just over a week. So each and every week we have to request another batch of them.
It wastes time and money for the pharmacy and the Doctorsm and ultimately means more stress and hassle for us. Specially when they leave it until the last minute! Why oh why do they do this????
There is even one Doctor - should I name and shame? Hmmm not at the moment, that NO ONE wants to see. I've told Mum and John that even if I'm dying I don't want to see that woman. Oops now there's a clue.......if you live locally to me you'll probably know who I mean....and avoid her anyway!!! LOL!!!
Then I had to go the Pharmacy to collect an item that was delayed/incorrect - I can't remember which but it is one of those! This is happening more and more too. We have to repeatedly go back again and again as things aren't signed, or they are lost completely, even though I've physically seen them with the Pharmacist. Then it disappears into a black hole!
Why can't people with common sense and logic work in these places and sort them out! Perhaps I should clone myself and tell everyone how to do the simplest of tasks.
Hey I wonder what my Blood Pressure is like now?!?!?! Perhaps I'd best leave it for a while before getting it done again huh.
Another Pain Course session, I'm enjoying them a lot and it's good to know that there are more ways to try and help deal with pain and also this time we spoke about goals. It helps to have some planned out and work towards them. So many times when pain strikes all you want to do is lie down and let the whole world go away, but it just ain't gonna happen is it? Nope nope and nope then! LOL!
Anyway as I said, goals. We have to come up with one that will help with our pains, and one that is purely for us or for us to enjoy. As you know if you know me, I can come up with loads, but it's not always possible for them to come to fruition, due to one reason or another.
17 february 2010
another pain management course
More exercises this time and also some good sessions on "Flare Ups". I don't have them as such, but some days pain is worse than others, so I suppose it is a sort of flare up if you like!
It's amazing that the course is nearly finished, a real shame as it has taught me a lot of new techniques and ideas, which I continue to use and will use as it helps.
They also mentioned a "First Aid Box". Now this is not what you think, a box filled with plasters and dressings. This is a box which is designed to be close at hand (or at least know where it is!) when you have a flare up. It can contain anything that will help you deal with the pain.
For example:
- Medication (not drugs as we all call them!)
- Pain Management Manual
- DVD's
- Chocolate
- TENS machine
- Relaxation CD's
- Cuddly Toy
- Wheat Bags
- Good Book
- A sign saying "Go Away"
You see the sort of thing I mean? Now can I fit a duvet in there which I can hide under and make the world disappear??? I don't think Domi will like being put in a box, but I can put photos in there and she might even come and sit with me on the bed. Bertie used to, he was good at that.
19 february 2010
a trip out in the country
I've had a broken fountain pen for a while. Now what has that got to do with the country you ask? Well fountain pens are a dying breed, and the shops that sell of repair them are few and far between. So this one I found is in the country and it'll be a nice trip out for us.
I also took my Dad's fountain pen, he always used a fountain pen and refused to use a biro. Mum gave it to me and I treasure it, although it started to leak and I found a place on the internet that repaired them. I sent it off and it was repaired and came back to me. However then I found out that they hadn't repaired it at all and it still leaked. I contacted them but they weren't interested at all and said they had repaired it and refused to repair it properly.
So I had the idea of taking it with me to this shop. Sadly, although he said it was a beautiful pen, he couldn't help with repairing it. So I'm on the hunt for a fountain pen repairer if anyone knows of one I could try. Let me know!
It was fantastic to talk to people who knew and understand fountain pens. I could've spent hours in the shop but John and Mum were waiting outside so I daren't. Shame really.
My fountain pen (not my Dad's) has now been repaired and is a delight to use once again. I do love fountain pens, they are so elegant and nice to use and it looks lovely writing in ink.
I was told once that I am unique as I use violet ink (not in all my pens, just one) but he didn't tell me why, just gave me a smile and wink! So what do you make of that then?!?!!?
Mouth problems occurred again, but this happens so often now, I forget to write it down. Yes, I know, the Dentist is still on the "To Do List" honest!!!!
20 february 2010
more bone pain than normal
What's with all the bone pain lately? I've had three pain patches on lately and it still doesn't help much. I'm also upping the painkillers, not quite taken the liquid morphine yet, but getting close. My 'good leg' is also hurting like hell too.
Sympathy???? Yes please, I'd love some! LOL!
22 february 2010
check out joanna sayers page!
John from Oz emailed me to tell me about this site. He said my fame is spreading far and wide and he ain't wrong! (Sorry about the bad english there!).
Anyway after my appearance on the TV, he found this site.
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Joanna Sayers is running like mad to raise funds for Macmillan Cancer Support. She mentioned me on her site when talking about Macmillan and that cancer patients need support more than people realise sometimes.
For example, did you know that 1.25 million people experience side effects and problems post treatment for cancer? I am one of those 1.25 million people and as you can see if you've read my diary, you'll know.
23 february 2010
another mouth problem...and wa-hey.....another problem into the mix as well.....
Off to the Docs I toddled this morning to finally find out results from my Review. I wasn't expecting anything too major. My BP has gone down a bit lately which is good. I'm hoping it's the Pain Management Techniques which are doing their stuff for me!
So you could knock me down with a feather when the Dr said "Your kidneys aren't looking good!" to me. She took my BP again and said it was up and that the kidneys were a bit dismal.
She's going to refer me back to the Renal Doc to see what he says as they shouldn't be doing this and should be loads better than they are.
Great huh! Just as I think things are going on an even keel, that "man who knows all" kicks me in the teeth again and I have to go back four steps once more. For once I'd just like things to go well and be even and no surprises for me.
After all that, I forgot to ask what I was planning to ask and couldn't get back in so have to wait another month until my appointment comes around again and ask then.
Please send me something to cheer me up - I sure need it at the moment.
My mouth problems are here again and it's only adding to the 'grey days'!