Cancervive diary
The Big CWe move mountains conference
This is the main Hall where we had our Conference....snazzy huh!
Quite a few nerves are showing about this Conference. I've had a few email conversations with it to people and they've tried to give me hints and tips of getting through it. One very good one from Phil, who told me about a visualisation to use. It's not one I can share, but during the event it certainly had me smiling I can tell you.....
The night before the nerves kicked in, specially as I hadn't gone through the presentation until about 11pm that night. We'd had a few problems along the way, the car had problems and Angela had to get it to her local garage first. Then my bruv lent me his satnav and it wouldn't work to get us out of our road let alone 'oop Norff....' - we had feelings of it all going wrong.
On the morning of the Workshop, the IT guys came in and then the laptop wouldn't even turn on....arghhhh! One good thing was Alan was in the next room (giving his nnnnth Workshop) and gave us good positive vibes although we did say we'd join his workshop if it got too much for us.
I made the admission about my lack of memory and it seemed to help people understand which was good. We made 'crib' cards and I only came unstuck a couple of times. That's the problem when someone else writes the presentation, you don't know it so well as when you write it yourself.
It was also nice to see Malcolm on the 'Hall of Fame' boards. As I said I miss his sense of humour, but know he's watching me make a total prat of myself at times. He'd laugh along with me though which is good. I hope you're proud of the Furry Monkey and what we're all achieving Malcolm!!
I also met another guy there called Mike. We chatted about many things in Reception and then everywhere I went he seemed to be there. He was an Emotional Support guy and I believe we conenct with people for a reason. He said he could teach me techniques to deal with fears and sadly, it was after the Workshop he taught me that but I did mention a fear of dentists. He taught me some techniques and when I go to the Dentist I'll test it out and let you all know what happens.
He said he'd see me at the next Conference and see how things were going and would help me further. I try things and if they work for me then that's all well and good.
I know some people only believe what they can see or know, but there are other things out there we should consider and think about...give it a go, you might be surprised... =)
09 november 2006
the big dentist test
Well here we are and it's the techniques I'm going to try to stop that fear. I had a horrible experience (well more than one!) as a child at the Dentist which scared the life out of me and I hadn't been for years before I saw Phil. He managed to get me from white knuckles and fingerprints left in the chair to calm and rather go to the Dentist than be at work. A strange change but when I trust someone then it helps and makes it easier.
Anyway here I was walking into the Dentist waiting room, I heard the drill and felt those butterflies in my stomach and chest. I had to wait as my appointment had been changed, a half hour wait longer than I needed to wait sitting there. I got my book out (Angels and Demons - give it a go, it's not my normal sort of book but I'm hooked on what is happening in those pages!).
"Karen" my name was called. Here was the moment of truth. I sat in the chair and explained how I was nervous and then started the techniques without telling them.
The injections came first and they said to hold up my hand if I felt anything. After a while I did and they asked "as we're nearly done could you cope with it?" so I said I'd give it a go. A brave move for me to do that...
I'm now pleased to say that technique worked for me. As I said, if I give
something a go and it works then that's fine with me. Some things just can't
be explained and that is one of them. Now I know I have to go to the next
Conference and find Mike to deal with some other fears I have to conquer...
11 november 2006
Guess who has a stinking cold??? Yes me! Feel really rough with it. Sore throat, aching everywhere, bunged up nose...great fun. Around this time last year, just after I had my flu jab I also got a bad cold that stayed around for weeks.
I'm under strict instructions not to pass it on to anyone, bit difficult
that. Someone gave it to me, and I like to share with my family and friends
:-)
12 november 2006
Something a bit different for a Sunday morning, here we are sitting in the Bue Oasis bar on the beach at Southsea....! What a nice way to spend a day, even had a little wander on the front, until the hovercraft came in...!
What a gorgeous November day in England,
see my friends overseas, it's not all bad....! ;-)
All of you poor people working in the garden, or doing some DIY in the house or on the car, such a shame you missed this....!
Enjoy it, you're only here once I say! :-)
A fantastic sunset over Guildford....
what a lovely world we live in sometimes...!
16 november 2006
drs - bp test
Blood pressure test this time at the Docs. One Nurse uses the 'proper' machine as I call it (the old fashioned way others call it!) this one uses the electronic machines. They are NEVER good with me, I had five machines at UCH one afternoon all failing to work on me.
She tried the spare machine and that wouldn't work either so in the end she went to the other Phlebotomist and asked her to do it the manual way. As usual, it worked - it always does the old fashioned way. "I told you so" springs to mind....!! LOL!
18 november 2006
nan's birthday and epsom racecourse awayday
Today would've been my Nan's birthday. I miss her a lot but one day we will meet again.
It was also the "Awayday" with the Cancer Network. It was all about moving things forward and working with the local PCT's. We had a very good Consultant, new to the area, in our group and he said that from his previous hospital it was a very different type of patient in this area. We tend to question things more here, which is a good thing. You shouldn't just PUT UP with whatever you are given when it concerns your health.
In the past I have been upset by consultants comments when I have asked questions but then it is them that cannot deal with the situation and NOT me. I know a lot about what is happening to me and my body with cancer inside it and I want to know more as I go along the journey. Cancer affects you not just physically but also mentally and it is that which is sometimes SO hard to deal with. Physical pain although it hurts like hell sometimes, can be helped. What goes through your head is harder to deal with.
Knowledge = power and I truly believe that. The more you know, the better armed you are. Our Advisor - Dr X - has helped me many many times by answering questions. Check out his page here!
22 november 2006
Oh dear, guess what now?!?!? Yes, Mum has got my cold and hers is getting worse too. She had a flu jab at the same time as me so I could blame that but she is insistent on blaming me. Typical...!
Mind you Mum had to go to the Docs about some results and he said "You have bronchitis" so she is now on tablets to help it. Her cough sounds really bad and apparently, it's ALL my fault. What can I say?!?!?
25 november 2006
tact meeting and crest information day
It was two hat day today. I had to attend a TACT meeting in the morning and then leave to go to the CREST Information Day. Luckily at both events I was sitting down...!
When I got to the Information Day, John and Mum went to the Coffee Room and had a hot drink and Mince Pies, sitting comfortably in the easy chairs...! I was then whisked off to see Christine, the Therapist who did the fantastic Reflexology Session at the Pamper Day. It lasted for ages and made my legs feel SO much better. Now why can't the NHS give Lymphoedema Patients the treatment they need to feel better and make their daily lives easier to cope with??? Nope, what they do is waste money where it shouldn't be. I've seen some of that going on lately and it makes me mad to see it when the service is in crisis. Us patients could tell you a thing or two....if only someone would listen huh.
Oh yes, I've also been told I've got lippier - although I prefer to call it 'honest and open'. Why not say it as it is? We can see things that they should be seeing and need to be told. I don't want to rock the boat as I rely on the NHS service to keep my body in check and ensure that when there are problems they are solved within a reasonable amount of time. All I do is tell it like it is.
So back to the Awayday, it was at Epsom Racecourse which was lovely as you can imagine. Some people who went were only interested in the freebies and the dinner but I was there for improving the future of User Involvement and working with Medical Professionals. What it was all about really...!
27 november 2006
ashford hospital and west middlesex hospital
Yes, more tests for me. At least I didn't need an appointment for these ones and could just walk in. One took about 15 minutes start to finish, the other took a lot longer. X-rays normally do but at least they got it all done in one go rather than having to have two or more goes as they have in the past.
The Dr said it would take about 7-10 days for the results. A different story at the hospital though, they said three weeks or possibly more so I'll just have to wait and see. No pun intended...LOL!!!
John also had to go to West Middlesex Hospital for tests. He has to go back on Thursday as well.
A strange one this, he had a blood test, not your normal blood test oh no! It had to be signed out and lots of details taken and the tube had a black and blue sort of camouflage lid on it. The phlebotomist hadn't seen one like it before and the Doc said you probably wouldn't again as it's quite rare. Now do any of you know what it is for? Email me if you do! We're all curious about it!
28 november 2006
france
It was a VERY rainy day when we arrived,
but we enjoyed it anyway!
You did read that right, we went to France for the day. Mind you, it showed to us all how slow we are and how little we can actually do.
We went in the Chunnel so sat down all the way, it was like a "drive in" getting there. Mum wasn't sure about it and it took a LOT of persuading for her to even consider going. She kept delaying things and we nearly didn't get all the forms completed and cover sorted.
Mind you, the same as with other things - when she was there she enjoyed it. We had a real good laugh most of the day. Apart from when John had an accident with a full box of good wine, it couldn't happen to the cheap stuff could it. It wasn't his hands either, it was the box not sealed properly. I wouldn't gone back and complained but he just accepted it. I was waiting inside and didn't know about it until he came back with Mum.
I think I must be the only enforced teetotaller to come back from France with some Apple Juice...! Mind you it was nice stuff in posh bottles so that is my treat to look forward to. Apple Juice is a favourite of mine so it's OK really.
We had a lovely leisurely lunch and yes, I had Pomme Frites...! Not something I normally have but I decided to enjoy the whole day and had a hot chocolate later on too....devil...!!!
We all suffered when we got back though, our legs really ached and we hadn't over exerted ourselves, but as I said, what to others is very little is a LOT to us when none of our legs work properly anymore.
All in all though we had a great day out and are looking forward to another when we've saved up some more money....!
30 november 2006
mr b, rnoh, london
I was phoned early today saying that if he got me in early we could get out early. I wasn't convinced as the clinics ALWAYS run late there. I don't think I've ever been early in all the appointments I've had.
However I was to be proved wrong and was called in early by Mr B. He was on his own and it was so efficient, I told him I was impressed with it....mind you I was wondering what had gone wrong at the same time....LOL!!!
Within a couple of minutes I was on the bed and he was examining my legs. They are painful at the moment and I've had a 'dent' appear on the left leg which is sore. It's always worth mentioning anything, they can either put your mind at rest, or send you for a scan.
So guess which category I'm in? Yes, I'm off for another MRI scan at Stanmore. Mr B is a belt and braces man (not literally!) so it's best to check how things are going and what is happening. I'm pleased to be honest as more pain means something to me. It's our body telling us something. Best to check. Just have to wait for an appointment now and see.
Keep your fingers crossed for me, and a few prayers would help!