Cancervive diary
The Big C01 january 2007
happy new year everyone!
Father Time arrived to take out the old year, I can't believe it's a New Year already. Time marches on as we have fun...!!
So far I have eight appointments in the diary for hospitals/doctors already. The NHS and I are such friends now, sometimes we disagree, but hey that's part of life isn't it?!?!
I'd just like to say a BIG thank you to all my dear friends and family who have helped me along over the year, with emails and jokes to keep me smiling.
I thought I'd share this poem with you all, such lovely words which say it all.
We've seen the passing of another year.
For many it's been filled with pain and tears.
We've seen our loved ones in their decline.
We've had to accept that they won't be fine.
Some of us had to say good bye,
To a long time loved one, and we've all cried.
But there have been times in this past year,
That certain events have brought us cheer.
There are so many friends that are on the list,
And I know there's names I will have missed.
But better friends I could not have bought.
And here is just a New Year's thought.
If it were possible that a wish could come true,
Then this is my New Year's wish for you.
May the coming year be full of hope,
And may we be given the strength to cope.
Let courage, faith and patience abound.
And let us pray that a cure will be found.
And now at the close of another year,
My friends, I wish you a Happy New Year.
Thanks also to the many medical professionals who have helped me learn so much about this disease and I hope that by attending the various Tumour Groups and NHS and other User Groups I have helped you all too.
It's good that our opinions are being asked for, and also that you are requesting our help - by working together it makes everyones life a lot easier. Knowledge = Power as we know!
To my Buddies, I hope that you all continue to do well and take each day at a time, it's easier to deal with small chunks than big elephants as they say =)
Last but not least, Dr X - you have helped not only me but many other patients who have unanswered questions. You answer them in a way that is easy to understand and that you answer them at all is more than some of the Consultants that we have all come across as mere patients in the system. You are much appreciated, and have become a good friend. Thank You!
Don't forget those jokes everyone, a smile a day keeps the Doctor away!! LOL!!! ;-)
VOTE NOW!!!
FURRY MONKEY IS ON BEST PATIENT MEDICAL BLOG
A very obvious self promotion here, but go to:
http://www.medgadget.com/2006bestpatients.php
and vote for the Furry Monkey website as best Patient Medical Blog!!!!
Go on, you know you WANT TO...!!
I'll be checking the results to see how I'm doing...!! Make my days go better with all these medical tests by voting for me...! Plug plug...!
Tell everyone who may be interested in helping me =)))
christmas magic...oops...forgot...
I forgot to mention on our traditional visit to the coast about the Magic Christmas House we saw. We came the country route back and coming over a hill was the most amazing lights on a house. Nothing tacky, really tastefully done and SO many people were stopping to see them.
This is what we saw when coming over the hill...
I thought that was good enough until I saw the rest of them!
This was close up, it's hard to take a photo with
this amount of lights but it's as good as it's gonna get...
Now that reminds me, who can tell me the artist and title of the song....there's a monster...coming over the hill...there's a monster...
It's been driving me mad for ages - please can someone tell me?!?!?! Click here to email me and put me out of my misery!!!
monster...!
Thanks to everyone who emailed me and told me it's "The Automatics" who sang that song. It's one of those ones I've never managed to get the title of on the radio. So thank you!
12th january 2007
mri scan, rnoh, stanmore
Ring Ring went the phone sometime before 8.000am. I heard the ansaphone pick it up and dozily went back to sleep...zzzz....zzzzz...zzzz....zzzz
Then one of the cats decided to join in and be an alarm clock for me. Meow, meow, he almost calls my name "Karen" which is odd. So I decide I might as well get up and see what the day brings.
On the way to the shower I click the ansaphone button and hear "This is RNOH Stanmore, there is a problem with the MRI machine, the engineer has been called...etc...etc...etc". The first problem for 2007 is here.
They called me again and said that they were awaiting a part and could I call before leaving home to go to RNOH. So I mentioned hospital transport and they said to call anyway and that transport would have been told.
I tried calling from 1.30pm as the driver rang yesterday to say he would be calling at 2pm'ish. That was the good news then, at least I knew I was being picked up which was the first hurdle...I'd not even thought about the machine breaking down.
Anyway I eventually got through about 2.10.pm and they told me it would be better to cancel my appointment and that "someone" would "hopefully" be calling on Monday....and if I mentioned my follow up appointment - the knock on effect happens every time of course - then "someone" would be able to "hopefully" help me on Monday.
Two mins almost passed and "ding dong" the doorbell rang. "Hi there, transport to the RNOH" - it was a nice car too and now I wouldn't be going in it...argghhh! I explained that they'd just called cancelling it and that he should've been told. He would lose the money for part of the job as I wasn't going but as he had no other pickups was quite pleased to be finishing early on a Friday and said he'd get a drink in early at the pub - at least someone was happy with it...!
So now I've got to wait til Monday. I've been waiting for this scan to find out what all this pain is about, my leg is SO sore again I can barely touch it and as for the cats brushing against it, forget it. OUCH!!!
a really big big big thank you!
To everyone who has voted for me at the Medgadget Blog Awards at http://www.medgadget.com/2006bestpatients.php
At the moment I'm in 1st place and am quite excited...it is easy to please me really. It'd be fantastic to be awarded that Blog Award but once it closes at midnight tonight I then have to wait until 19th January to find out.
Keep everything crossed for me everyone, and if you haven't voted yet, then PLEASE do...!
15 january 2007
middlesex hospital, lymphoedema clinic
The doorbell rings and I know I'm at least going to the hospital which is something. I did have my doubts about it as I'd not had a call but I know Pauline is reliable and she ALWAYS ensures it happens.
I'm in the Monday Clinic this time as I was "supposed" to have had my MRI scan on Friday but we all know what happened to that don't we!
Pauline had already told me I'd be seeing Jan so that was good and we could catch up as we haven't seen each other for ages. She was leaving the Lymphoedema Clinic and going to another department in UCLH. She is sorely missed by me, and no doubt others too.
I arrived a bit early and they were at lunch so I sat in the waiting room, pressed play on the mp3 player and read my Dan Brown book. I was well into the chapters when I sort of heard my name and there was Jan. I put all my stuff away and we went to the Consulting Room, it would be the furthest away wouldn't it. I think the NHS does this on purpose to exercise our legs!
After meeting a Nurse who was training, we caught up with things and how life was going. Some ups and downs as normal. Loads of hospital appointments, cancellations and changes....the normal really at the moment.
She measured my legs, at least this time it wasn't the couch that collapses when you're on it. It was the original one from her other room, the one in the basement with no windows and a bit dark and dingy.
So on the couch I got and she put the tape on to measure them. They are measured at regular intervals from the tips of the toes to the knees. They have increased in size in some places and reduced in others.
However there is also increased pain and some new lumps have appeared which are extremely painful at the moment. She said that they wouldn't be able to offer bandaging at the moment, or put me on a wait list (it'd be too long!!!). So it's stockings only, and they will take 6-8 weeks to arrive.
It's something but it doesn't really help solve the problems though. It's a compromise. You really shouldn't have to take compromises when it comes to health but sometimes you have no choice.
So at least I'll be getting a couple of new stockings which will help. She also gave me some adhesive as - this is embarrasing - they fall down when I walk. It's like Nora Batty in reverse, mine don't stay up and it's embarrasing having to keep stopping and pulling them up. John did suggest braces but I'm not so keen as you can imagine! =)
19 january 2007
final poll voting at medgadget
At the moment I'm still in first place on the poll. Thanks to everyone who voted for me along the way!!! I'm very proud as you can imagine, recognition goes a long way and a pat on the back makes everything worthwhile. I'll let you know when I hear.
The judges have a 50:50 vote with public I believe so it's not all cut and dried by a long chalk.
I'm also going to see Dr W this morning - can you believe I actually managed to get an appointment. John has been trying since before Christmas and has now given up.
They seem to change the rules all the time!! One minute you
ring on the day and no pre-booking, then they tell you Dr W is booked solid
for a month in advance. How can he be if you have to ring on the day?!?!?!?
Argghhh!!!
22 january 2007
dr dhakam's clinic, ashford hospital
Another new clinic for me. First of all though, I had to have a blood test. That was supposed to be the easy bit! Oh no it wasn't....!
I went in and there was only two other people there. One lady didn't like blood tests and had had radiotherapy (not chemotherapy note which would change the veins situation!). She was so tense it was difficult to get blood and they said they could try the hands. She refused this.
I've had needles everywhere on my body as I've told you before and just wanted to get mine done. It was 1pm and I hadn't had anything to eat since 7pm the night before and was feeling peckish!!
Eventually it was done and she went after some heavy breathing exercises to calm her down.
Now it was my turn and I had to tell him I was another difficult patient, having had chemo, radiotherapy, kinky veins, fine veins, deep veins! Boy was he going to love me. His name was Scott and he told me that he liked a challenge, it was better than everyone's veins working first time like clockwork.
He had problems though and tried a couple of places and then after three times said he'd have to call a supervisor. Now isn't that nice to find someone who does what they're supposed to and doesn't use you as a pincushion!!
Poor guy, he was so apologetic and said he's probably bruised me which he had (see photos below, nothing major!). He said 10 mins and then he can go to lunch, I'd probably fill the time with ease!
I have three punctures on one arm and two on the other....look like some sort of addict, or someone with a violent boyfriend as Patrick said...thanks Patrick!
He did suggest cutting my arm off, dripping the blood in a bucket and doing it that way. I said as long as he can reattach the arm, I'd go for it..! LOL!!!
We didn't have to resort to that, but it took over 30 mins to find a vein and get the blood. In the waiting room someone was complaining about the time taken.
Mum had come with me that day and she said to the person "My daughter has had chemotherapy and radiotherapy for cancer treatment, it is not her fault". At this point they apologised and said they didn't realise. Good old Mum!!!
I wish people wouldn't make assumptions about me!!!!
Anyway I then went on to the other Clinic, just had time for a coffee - then straight into another waiting room. I didn't have to wait long though which was good.
He went through my history as he knew nothing about me, not even the NHL. He had already written to me about a CT scan, blood test, etc and then when I gave him my history (abbreviated version of course!) he said he was concerned about me having another CT scan. There is a risk with radiation on contrast dye scans he tells me. I wish I knew what the truth was as no one tells you, they all have different stories. What is the truth Dr X????
Anyway he went to listen to my heart and couldn't find it. I was beginning to wonder if I was really alive, no blood, no heart beating....should I be concerned?!?!?
He then took my blood pressure. After all the blood problems and heart problems he then said "oh it's high". What does he expect? I'm no Doctor but I do know stress plays a part in your blood pressure!! Common sense tells you that.
Oh well, now I've got to get my scans from the other hospitals. Sounds easy but some are at UCH, some at Stanmore, some with Mr B, and some under my bed...! Where else do you keep them?!?! It was that or on top of the wardrobe for now. I was going to see if I could scan them to show you my tumours but it's not easy, I'll give it a go when I have more time maybe. Remind me if I forget.
So now I have another follow up appointment and will see what happens then. One thing leads to more appointments and hassle. Up goes the blood pressure again then...!
23 january 2007
rnoh, stanmore - mri centre
A phone call from Brian who said he was collecting me for the scan gave me hope that it would happen this time!!
Success - Brian arrived and he asked "have they cancelled again this time?". "Not yet," said I "so I'm going to go and see when I get there!". So off we trundled, he had a nice car/van and there was already a girl in a wheelchair and her Mum in there, so I sat in the front...co-driver again!! LOL!!
It was a good run through to Stanmore, the M25 was behaving and there were no major holdups which was fantastic. We got there about just gone 1pm. My appointment was not until 1.50pm but I had my trusty Dan Brown with me and my mp3 player but I was concerned about playing it with the scanner around just in case.
I jsut got interested in the next chapter when John came out and said could I get ready, then he said "no hang on, I've just got to check something and then we'll go out".
He called me a few minutes later and I had to take off my watch, leave my bag etc, all locked safely in the cupboard. I asked if I could leave my coat in there and he said "Yes" then quickly followed it with"No", "Oh, why?" I asked and he replied"We'll be going outside, I'm afraid the MRI is broken and we're awaiting a replacement so it's a mobile unit."
We had to walk outside in the freezing cold Hertfordshire air and then go up the steep steps to the machine. It was all a lot smaller than a real scanner room and could only take him, me on the machine, and a nurse at the other side. I had to take my stocking off as he said the elastic in them could cause a problem for the scanner to read correctly. Again this is not something others have mentioned. If only they all had the same ideas it would help wouldn't it.
I mentioned that I might get cramp (at the FRONT/SIDE of my legs not the back strangely enough) and would have to get in an upright position ASAP and he said we'd sort that out when it happens, hopefully it won't. In between the scans I had some twinges so tried rotating my foot a little to see if they'd head it off. I then heard "Please try to keep your foot still, the next scan will take 5 minutes". That told me.
I thought when it stopped crashing and banging then it was between the scans. I did check this when he came in, and I was right so I just timed it right. He wasn't sure I'd heard though as the sound is intermittent sometimes.
Another thing, when the scanner was doing it's stuff it was like being in 'old sparky', the electric chair. Everytime it started scanning the lights kept dimming. It did make me smile. I was waiting for the crackle noise...LOL!!! Luckily it didn't happen and it all worked fine.
They had to check each scan was fine before going ahead with the next one, and then after about six of them, I was free to go. At least it's all done now. All I've got to do is wait until the end of Feb for the results with Mr B in London. It can't go quick enough for me I can tell you.
Now I've got to sort out the rest of the stuff....nightmare. Talk about stress being piled on top....sometimes it never feels like it's gonna end.
Keep positive, keep smiling and look on daily life as a challenge.
24 january 2007
home...guess what...!
Yes, look what was outside the window this morning when I woke up...!
Snow always makes me think of a magical time. It seems unreal somehow. Perhaps it's just me, but it is so lovely. As long as I don't have to try and walk in it!! I took the photo just after 7am - the timer on the camera has been corrected now.
We are supposed to be getting more too. It's certainly cold enough.
Hope you liked the photo this morning John and Brenda in Oz...remind you of home????