Hi folks
I have taken a photo and attached it to this post so you can see it. You apply online to this organisation or you can call up for it, it has lots of pages to record hospital visits side effects treatments etc its not a yearly one it will possibly last for several years its absolutely great, Available by donation. I personally thought it was worthy of £20 bit steep you might say but all in all this site does a lot for me personally from my perspective therefore I thought that sum appropriate for me.
It is a very handy place to jog your memory provided you fill it in of course!
luv Min
http://www.myeloma.org.uk/fundraising/fundraising-news/500-patient-diaries-sent-out-since-launch/
Hi Angie and welcome to our happy little group,
You have come to the right place for support of whatever kind you need.
It is indeed a complicated subject and I struggle to understand the blood side of it, but have learnt to describe the bad cells as fighting against the body then getting carried away with themselves.
It is all so strange at the outset and as you get more familiar with it you will be able to describe SCT like a pro who passed your biology exams!
Now that your mum has a diagnosis and a treatment plan, you can familiarise yourself with what to expect to happen as she works her way through CDT treatment. There will be up and downs (hopefully not too many downs) but we will be here to help with advise and lending an ear when it all gets too much for you; and her of course
I hope your Mum and Dad are coming to terms with the news and not too down as I know it can be a dreadful shock at the outset.
Knowledge is power, and knowing what is happening and why is often an easier approach than panic… Been there done that too, and still panic occasionally when a temperature raises its ugly head.
Your among friends now and hope you will drop in and keep in touch occasionally
Regards
Min
He was on 10x2mg for the 1st four days, His swollen legs and feet are a sign that something is not working, last time he was on thalidomide he was on massive doses in pulses and his kidneys cleared up overnight so hence the reason for the increase…
wouldn't you just know it that he has had swollen everything for about 7-9 days now and today when we went he was fine…
I have a meeting with HR on Monday, to discuss the package and it looks like it could be 31st march to leave but I had said with my application that I wanted to go earlier because of Peter. The organisation is aware of his illness and have given me quite a lot of support and Im hoping that a short conversation I had on Friday was an indication that it might be even sooner.
I cannot sleep as I am itching all over, and waiting for an anti histamine to kick in… cant work out what the hell is causing it but its becoming a regular nightly event.
Oh don't know if anyone has applied for a Myeloma Diary , but now we have it its a bit easier to recall events as time all blends into one. Available for a donation from this site and very very useful for recording medication and blood results etc Highly recommend it for anyone like me with accelerating altziemers!!!! Big birthday tomorrow so Im allowed to be forgetful officially now… no more need to make excuses I cant wait for the bus pass.
luv MIn
Ok now that Silent Witness is finished I can recommend The Big C
a comedy of sorts about a cancer sufferer. I missed the 1st one but laughed a lot at the second one. Some hard language, but not unnecassary, and usualy apropriate.
Think its channel 4 on Thurs
Min
Keith
Peters dropped to less than 80 at one point and they said as long as it was up to 50 he was ok, it was not till after his 2nd cycle that he was diagnosed with thrombosis, so they kept a really tight check on it as he was also on blood thinners. Good luck with your velcade, on 3 rd cycle it stopped working for Peter.
Hi Bridget
Pete rwas feeling absolutly dreadful the first week of Revlamid, throwing up runs, pains and tiredness. But it did allow him to sleep better.
He is now 14days in and he feels better but still tired. He has some problems with his kidneys but following a briliant clinic visit today, we saw a new Dr from Germany, who has worked in the USA for two years.
He made it clear that as Peter,s remission was only 5months another SCT will likely the same so he needs to consider a sibling transplant if he responds well to Revlamid.
It was very enlghtening in many ways and although he had bloods and urine done and there no results yet, just felt so much more posative and informed than previously. Confirmed the need to need to keep taking Aciclavir, will increase his dosage of Dex for next lot,and doing more tests for protein loss in kidneys. All in all brilliant consultation.
I went back to work yesterday still have backache but no leg ache, but had to get up to speed on what is happening with my redundancy. Curiosity got the better of me.
Peter is planning on going back next Monday aslong as he continues to feel well enough.
Hang on in there as he was warned that the 1st month would be the worst.
luv Min
H Keith
Peter always found that his platelets had recovered in the 10 days off period, and on the one occasion that they did not he simply missed one injection of velcade, until they had recovered. Hopefully you will have made that recovery whilst you have had your rest.
Min
Gill
I do hope Stephens black eye is healing to a lovely greenish yellow by now. I was amused as last time Peter was on Dex he almost had a punch up with a queue jumper on a garage forecourt.
How is the Puppy settling in? still keeping you up at nights or now sleeping with her new brother.
also hope Stephen is coping with Velcade and look forward to hearing how he is progressing.
Peter is at clinic tomorrow, two week check following new Revlamid finally settling down to it but dreadful cramps mostly down to not drinking sufficient, when taking water tablets. Once I can teach him to drink more he will be better, but its a struggle
Min
Go SarahGo
Very brave decision, but I can understand why. Life is just too short.
You do cope, we had 18months with no wages and a bloody porshe to pay for. Its long since gone but it bled us dry for a long time. What I plan to do is make a list of groceries every week and send Peter for it as I am hopeless and just get carried away whenever I step foot in the supermarket. Peter does not know this yet but as he has been in a supermarket about 5 times in 5 years he is about to have a rude awakening. If it doesn't work I will have to live on bread and water. The redundancy package is not wonderful but as I had to work until Im 65 for my works pension it will do, I followed him round the country for 27yrs while he was in the RAF so did not get the opportunity to accrue much pension anywhere. Younger people be aware…. I never thought I would be old or need a pension duh! I have to wait for another year to get my old age pension as I fall into that group where pension ages were changing.
But I am so looking forward to the challenge to fill my day.
I take it the children survived the storm in Oz
Luv Min
Hi Jo
One of the consultants we saw a few weeks ago, was German who had just spent two years in America. He had some amazing thoughts on the subject and I think he will find working in the NHS for a few years quite a step back from what he is used to. If velcade works on you its wonderful, its so sad that mm sufferers have to try everything to see if it works. The waiting to find out seams interminable.
Thanks, its just sinking in Im going to have a life again….. have a lovely trip and don't forget the photo when you come back, have a lovely time with your new grandchild. And of course her parents.
Luv Min
Hi Keith,
You don't know how much you appreciate the NHS until you need it, but we have to improve or stay the poor man of Europe for cancer survival rates. There is no easy answer and change hurts, but if its better so be it.
Early diagnosis is the key and those people with MM often do not get this. Perhaps the private sector would be paid by results and get it better quicker!
Min
Due to all the fingers and toes crossed by the beautiful people on here, I have an appointment with HR on valentines day to discuss my redundancy package…………….yippee, I will be drawing my pension soon.
Luv Min
Hi Jo,
He was on a low dose of aciclivor following the breathlessness which turned out to be DVT so he takes half a tablet three times a day. Most days now his ankles and feet are swollen, cannot work out the cause, some days its worse than others but he does have water tablets to deal with it.
The sciatica is much better thanks, not gone totally but under control now, so back to work on Monday ugh.
luv Min
Thanks Bridget,
Actualy today he said he felt better than he has in ages. His reasoning being the velcade must be out of his system? In fact he remarked that he was feeling stronger, than he has since he started on velcade really did not do him any good. what little muscle tone he had gained before his relapse was lost whilst on velcade.
Personally I think it has more to do with not going to work, he used to come home and just sleep for England. I know the interaction with his colleagues is beneficial but he simply has not got the stamina he had when he went back in September.. Poxy myeloma!
luv Min
