Cancervive diary
The Big C01 april 2010
not an april fools joke
This is not a joke, take a look at the photo and this is the toothbrush I have to use when my mouth is playing up, which seems to be every other day at the moment. I had to get a childrens toothbrush in the supermarket and it's for 1 year olds I think!
A friend of mine said it looked like a caterpillar and she's not wrong. Thanks for that Di!!! Seriously, it does though although I think it's supposed to be a dinosaur or something similar! LOL!
Also I planted these recently in memory of Bertie. I can't remember when I did it, so I thought I'd just add them in now before I forget!
This one has Forget Me Nots in it which was sent with the "Sympathy Card"
that I received from Bertie's Vet. A lovely thought isn't it....
This one has the Narcissi bulbs that Auntie Rita gave me at Christmas
in memory of Bertie - she was the only one to remember him with me.
08 april 2010
at the hospital again
This time it's an appointment totally unrelated to the NHL.
However I did find out more about my kidneys whilst there, although I think the Consultant was unaware that I knew the staging of it and told me by mistake!
Apparently according to the Hospital I have Stage 3/4 Renal Failure (CKD). So it's official now. Not a lot I can do still until I see the Renal Consultant to find out more.
It's a bit scary to be honest, I've had a quick look around the internet, as you do, and some of it is really frightening. People have said all sorts of things about others they know with kidney problems.
Some have died waiting for transplant or whilst on dialysis. Others have a special diet they need to follow to keep whatever kidney function they have as good as possible.
Still, as I said, I've not seen the Specialist so don't know the in's and out's of it all.
Until then, I'm not going to worry too much. I have other more important things to think about which are more worrying, so why add more to the fire?!?!?!?!
10 april 2010
now what in the hell is happening here....?
I noticed my legs are more 'fluidy' lately. I thought it was just the weather or something, then thought it could be the kidneys - you get more fluid with kidney problems, although it's normally at the ankles.
So what the HELL is this? Have a look and let me know what you think!
The skin is all rippled and has huge great dips on it. It doesn't feel like normal skin. Now they told me I had fibrosis in it after the radiotherapy, which I know about and can feel the difference, but this is something new to me!!!!
I'll let you know if it changes!
11 april 2010
thought i'd share these with you!
You remember I told you about this lovely little Farm Shop come Tea Shoppe we found. Well I've just downloaded the photos of it and thought you'd like to see. It's a higgledy piggledy place but that's part of it's charm! It also has a Tree House which you can go in and have a Cream Tea. We've not tried this yet as we'd like to have it all to ourselves and with no screaming kids.
Something you can't always guarantee these days. Sorry, but much as kids are OK sometimes, screaming ones are NOT!!!!!
This is the little Tea Room which is crammed with goodies!
Another view of the Tea Room
What a photo - the actual Cream Tea! As you can see it's much enjoyed!
This is one of the many dogs that wander around the place asleep at my feet!
Anyway it's a gorgeous place and sells wonderful organic veg and the best Jams and Marmalades you ever tasted!!! John says their Mince Pies are wonderful too! It's amazing they do what they do actually as they have NO mains electricity - amazing huh!!! It's all done with a generator and candles! What a lovely way to live in this day and age. Sounds idyllic to me.
14 april 2010
just remembering.....
I had an email from a long time NHL friend today and he was reminiscing about all the people he'd lost along the way and it reminded me of dearly loved friends and relatives too. I found this poem when doing some housekeeping on the PC and thought I'd share it with you all.
Remember Me
To the living, I am gone
To the sorrowful, I will never return
To the angry I was cheated
But to the happy, I am at peace.
And to the faithful, I have never left.
I cannot speak, but I can listen
I cannot be seen but I can be heard
So as you stand upon the shore
Gazing at the beautiful sea, remember me
As you look in awe at a mighty forest
And its grand majesty, remember me.
Remember me in your hearts,
In your thoughts and the memories of the
Times we loved, the times we laughed.
The battles we fought and the times we cried.
For if you always think of me
I will never have gone.
Just remembering those we have loved and lost. I will always remember you.
17 april 2010
happy birthday phil!
Just had to say a "Happy Birthday" to you. Hope you like the card - all handmade by my own fair hands for you. Took me ages to source all the parts I needed but I got there in the end!
Have a good one, and don't have too many of those fizzy sherberts!
22 april 2010
oh dear, more bad news......
Well it's the time of my kidney appointment with Dr Marsh. This time I didn't see him but he Senior Registrar, sadly his name eludes me at the moment sorry. He was a very nice guy though and very thorough and asked loads of questions. He also examined me and when he touched my lower back, I winced and he said I should see the GP about that as it's not right. That's something else to do. It's hurt for a while, especially if I get into the car or sit awkwardly and catch it, it takes my breath away.
Anyway apart from that what is the bad news then?
Well, I now have Stage 3 (borderline 4 according to the charts I've seen) Kidney Failure!!!! Arrghhh whatever next can I get huh. Don't I have enough problems already?
He said that I would be referred back to my GP for regular monitoring and if it changes again I will be sent back to the Renal Unit for further assessment and treatment. They don't recommend a 'kidney diet' as such anymore, but to take care of the kidneys. Not much more info than that sadly.
So I've used my initiative and asked my GP, the good ole' Doc W to refer me to a Dietician. He said it would have to be a Renal Dietician as they are specially trained in that area.
Obviously I could be eating things that are making the kidneys struggle and I don't want to do that. I want them to stay in me as long as possible and although they will never recover, I don't want them failing on me totally.
Great huh. You'd think I've got enough problems, but no, let's put more on her and see how she copes with this!
So I've just got to grin and bear it, as normal. It doesn't concern me too much as they say it's being monitored regularly. Last time, it was the painkillers I was on that was killing the kidneys, so they stopped those and the little kidneys should have gone back up to their normal standard, which they did for a while, now they've decided to go back down again.
Luckily the GP spotted it and sent me straight to the hospital which is good.
So all in all, not a good time to be had at the moment, no wonder I feel more tired than normal. I'm trying different sleeping times to see if it makes a difference but it doesn't seem to be. Never mind, I'll keep going and keep smiling!
30 april 2010
a treat for john and me....
Well we deserve one don't we?!?!?!? Of course we do.
So what did we decide on? We decided to go Clay Pigeon Shooting again! It's such fun and the Instructor (Dan) makes us rest a lot so it helps. He is also aware of our medical problems and our inability to stand for long and makes sure there are seats for us to rest.
We now have two cartridges in the shotgun at the same time, we started with one and are now going up! It's windy today though which makes it harder to aim and follow it.
In one section I got 8 out of 10 and a kiss from Dan! I'm really pleased that this is something both John and I can do with our health problems and enjoy. This time I mentioned that the first time I had a huge bruise on my arm, and the second time, another bruise, although not so big.
Dan said it is a combination of things, but made sure the shotgun was put in the correct position each time to see if it made a difference. I did get a bruise, but it's a small one and not so painful as the others which is good news for me and my poor arms.
So off we went shooting the next lot, the wind didn't help but we still managed to get some shots in! Then came the competition shoot where he puts John and me against each other. Last time I said, "I'm not competitive much" when I won, and he said "Yeah, not really huh!" or words to that effect. Do you think I'm competitive?
On with the competition shoot and guess who won? Me!!!! I got 5 out of 6. Not bad huh!!! Ending on a high...brilliant.