When you see another patient wearing one of those cooling caps on their head, ask them if they're having a perm or just a wash and set. It usually gets a giggle and makes everyone relax a little.
now who is up at such an ungodly hour? do you not sleep?
how weird is that, we're both up!
it was a bit of a farce yesterday. a 2 minute injection took 3.5 hours. my prescription was delayed, then my consent form lost! but they got the cladribine in. should be quicker today. but gotta have x ray as my line isnt giving up blood. it flushes so should take the rituximab, so we'll just have to give blood the old fashioned way!
Hi Wendy. Fell asleep in the chair again last night. Woke up in the early hours and went to bed. Then slept badly and dreamt I was cold. Had to "leave my seat on the train to find a pullover". Woke up and felt really cold despite blankets. So I've put c/htg back on.
My gastritis has been playing up a bit this week. Get bad acid if I eat sweets or too many nicotine lozenges. I don't eat much otherwise. Daily doses of Actimel and yoghurt plus one meal Today it was a whole quiche. A £2 one from Asda.
Couldn't get a diabetes check done anywhere (suggested by haemotologist) so bought some sticks for a urine test. Tried 3 or 4, nothing happened, even the one dipped in sugar solution. But the chemist assures me they work, the sugar was the wrong sort - it should be glucose.
Since I've stopped eating sweets have felt better. Went to chemist and back, a two-thirds of a mile trip. Not every day I can do that. I get envious of people on this thread who go mountain climbing and leap tall buildings in a single bound etc.
My neighbour, Mr Noah, he's been building a big wooden thing in his garden. And he's acquired some exotic pets, too. Says he's going on a trip soon. I asked him about tomorrow's weather. He thinks it's going to rain.
Oh well, I haven't got to go anywhere. Just wish the tv was a bit more interesting.
it has been colder, but i get cold when tired. get yourself a hot water bottle! the heating only is allowed on at ours on christmas day. my husband always says 'put on a jumper', but i keep sneaking it on, he he!
i think gp can do diabetes check, even nurse. why not try asking? i wonder if its a food intolerance? changing your diet makes me think. a life without sweets might be extreme though, perhaps a small dose. but if it clears it up maybe its a worthwhile sacrifce.
dont you have interesting neighbours? mine are way less biblical! someone said that theres no bad weather, just wrong clothing!
i dont care if it takes 4 hours tomorrow and i have to stand on my head, as long as it goes in! to finish a whole course is all i want.
read that living well is not waiting for the weather to improve, but learning to dance in the rain. i think they are right, i just need some more wet weather clothing!
keep trying to find what it is, hope its sorted soon x
When you get old like me, you'll find you can hold a hot water bottle in your hands and the backs of them are still cold. A few months after chemo, I had a couple of "hypothermia" experiences. The bedroom was probably about 60. My hands told me the sheets weren't cold but when I got into bed it was like jumping into a pile of snow. My muscles contracted, my teeth started chattering and my body jerked with convulsions. I got up again and I was alright. I told the doctor but his attitude was as long as I wasn't having night sweats it didn't matter.
I rang Cancer Research and asked them if they were doing any research into Candida and its relationship to cancer. But she said the WHO has to say that something is carcogenic before they do research for a cure.
I started wondering what makes doctors come up with beliefs that don't hold water in reality. I was told in 1970 that if I always breathe through my nose, I would never get another cold. Years earlier doctors were telling us to put butter on a burn, never put it under a cold water tap. Even though we knew that butter made it feel worse and cold water made it better. In 1860 the doctor who told other doctors to wash their hands and instruments before examining patients ended his days in a lunatic asylum. The doctor who discovered that it was an infection that caused ulcers was ridiculed. So he infected himself, got an ulcer tyhen took antibiotics that cured it. "Then all the reindeer loved him...and he got the Nobel prize..." I had the gastrologist tell me that infections can't live in the stomach because they are killed by the stomach acid. He gave me antacid to relieve my gastritis even though it can be caused by too little acid. Didn't check which one I was.
And now they tell us if someone collapses into unconciousness, we must assume that their heart has stopped and we must bang on their chest to the tune of "Staying Alive". We mustn't check for a heartbeat or pulse because we're not qualified. Yet any machine we bump start will be damaged if we continue trying to start it once it's going. (car engine, plane propeller etc)) If you pound on somebody's chest and their heart starts and your pounding is out of synch with their heartbeat, it must be dangerous. Plus if I put my hand on a woman's chest, she'll sue me later for sexual assault. So if I see someone collapse, I'll ring 999. (If I'm held in a queue, like last time I rang, tough luck. The patient had better hope he's unconscious from drink.)
So Fred stops his car at the traffic lights. A motorcyclist pulls up beside him and falls over. Fred gets out and helps him up. "You been drinking - No, mate." The next traffic lights, the same thing. Fred helps him up. "Do you have a medical problem? - No, mate." The next traffic lights, it happens again. Fred says, "How long have you been falling over like this?" The man says "Ever since I took my sidecar off!"
I've actually finished a course of chemo. Its only taken me 6 years and 3 go's.
I'm just giddy, its in and that's brilliant. Now I have got every chance of a cracking remission. So come on, who thinks they've got the longest remission? We should see who I have to beat.
The Rituximab starts next week for 8 weeks but so what, I don't mind. I've done so very well so far, not a sniff of an infection. I'm sure it'll come but its not messing my chemo up - ha ha.
Great news Wendy, well done, and wow, it's taken a while for you to get there!
Can't remember the stats - heck, you can prove anything with stats depending on the way you cook them - but I seem to recall they reckon once in remission from our hairy friends, typically you stay in remission for 8 to 10 years. If so, you've got plenty to look forward to, though it could be "Come in number 9, your time's up!" for me, a call I last heard on a boating lake somewhere...... oh, that was meant to be funny, not tragic!!!
Things pretty much ok with me, still cooking, dusting, vacuuming, cycling, walking etc....ooh, here comes a spot of thunder, could be a wild weekend.... a while since I had one of those....
Congrats Wendy! It's a great feeling to know you've completed it. I'm not sure what this Rituximab is as it's never been mentioned to me, but I have read that it is a good thing! So best wishes that it goes just as well as the Cladrabine.
I just wanted to say thanks for the warm welcome a couple of weeks ago from everyone when I last posted. Things have been very manic since then as I have ramped up my efforts to get fit and healthy. I started a running program 5 weeks ago that I found on the internet called 'Couch to 5Km' which I thought would be an appropriate program for me.
It's started off with running for 1 minute, then walking for 2 minutes, then repeating it for 20 mins or so and slowly over the weeks it increases the running times. On Saturday I ran for the furthest I have run in about 15 years...wait for it....a whole 20 minutes without stopping! Woohoo. There are downsides of course, and the main one is that I am now a wanted man on the Leeds canal for the mass murder of all the flies that get stuck to my sweaty forehead.
Joking aside, I'm starting to feel some major benefits from this training program, I am fitter, stronger, certainly healthier, and most of all I feel good about myself and I still have 3 more weeks of the program left at which point I should be running 5km in 30 mins. I looked around for some sort of recovery program when I came out of hospital and I couldn't find anything at all. In the end I decided to start walking, initially with a 10 min walk, then 15, then 20, to the point I was walking 5 miles. Thats when I started the C25K program and I have improved massivley since then.
I've also stopped working through my lunch hours and I now go swimming for 30 mins, which is helping me de-stress better.
I guess joining the hairy club has changed my life as I am certainly feeling far more energetic and fitter than I was for years prior to diagnosis.
One thing I hadn't realised was that we should be keeping our blood counts. I forget who it was that asked for mine, but I will get them at my next consultation in 2 months and post here for all to see, nose over and comment.
This is a great community with a lot of positive people who are ready and willing to be there for others, and whilst I am lucky to be ok at the moment, it's nice to know there are others who will be there for when I have my down moments, and I hope I can return the favour.
I still haven't got my blog up and running but hopefully it should be done this coming weekend and I'll post the link here once I do.
