Gill twas me who told this site about Healthspan, I have used them for years. Buying omega3 pills. Tip of today if you have an old dog (not your partner LOL) I have started givng my 12yr old lab one of there products called flexijoint and he is behaving like a puppy, with no aches or pains. Wish I could persuade Peter to take them…………..
I have no doubt the vet would have given me some really expensive drug leaving me pennyless.
Today is better than yesterday, Its Peters bithday, and has got over the shock and fear he was experiencing yesterday. Its amazing how different things look after a nights sleep albeit fretfull sleep. The injections of Heparin are challenging but will be beneficial in the long run so have to go with it.
Yesterday he feared he was about to slip off the plate and was wrung with a sort of panic attack. I bought him some 'tank' books and paints and yesterday is slipping away to be replaced by absorption in his new hobby. Attending his works christmas do which he has missed for 2yrs and being part of the work force again for as long as he is able. It gives him some purpose and takes his mind off the ever present mm. The poxy disease rules too much of our lives.
Min
Oh Gill,
I feel for you and Stephen, whilst Peters remission period was shorter than Stephens having had any kind of normal life without meication and tests and more tests it was a wonderful time.
Peter would and did say today, that he feels fine and cant understand why he is or was unaware that the beast is back.
Yesterdays nightmare is over, and today is a new day with new challenges. Peter doesnt have paraprotiens he has light chains and yesterdays news that it had doubled every 2weeks reaching a hiatus of over 7thousand compared to 5600 at dagnsosis made us very frightened imagining that this thing is coming back very agresively.
It was all put into some perspective by meeting a lovely couple at the day clinic yesterday, who had just had great news that his pararoteins had now got to .1.. from a very high figure. Like Peter this man(Mark) had relapsed 5months after his sct and started on velcade, following 4 cycles he had made the decision to stop treatment as he could not cope with the fatigue. He was persuaded to keep going for 2 more cycles and those two showed the greatest response. There joy at the news was palpable and infectious.
So much so that when peter was so upset last night re-calling the events of the day and how bad it all was, I pointed out the joy we felt for them as a good point.
This morning was not good, but the day has got better, and Peter has got over the shock and dissapointment of all the bad news yesterday and is now thankful that the test was done or he may have died on the operating theatre due to the bloodclots in his legs which may not have otherwise come to light.
So every cloud has a silver lining.
Today is bad but tommorow will be better and our mood will be back to fighting.Not that its any consolation but having been there and got the tee shirt you know that you are not alone and you know a little of what to expect rather than constant worry at all the new faces and terms and proceedures that Stephen is about to embark on.
Im with you all the way the expletives really are the only way to deal with this poxy mm.
Love
Min
As well as the fact that we still have snow after 14days which is driving us mad. Today the cause of Peters breathlessness was revealed,
Following a clinic visit we saw the consultant who did bloods followed by a scan and xrays which showed up as a blood clot in each leg behind his knee.
That was the 1st kick in the slats followed by the news that the planned operation for Thursday was to be cancelled due to a tumour load in the vertibra. Next news that his light chains have gone up to higher than they were at diagnosis, although they have made a small response.
We spent the entire day from 9 till 5 going up and down stairs for a variety of tests and back and forward to the consultant.
His platelets are really low and he now needs an injection daily for the next 4 weeks to disperse the clots.
I am mentaly and physicaly exhausted. Peter is gutted and inconsolable followed by angry and frustrated. All in all it has been a long poxy myeloma day.
Its difficult to try to be upbeat right now.
Min
Hi Stuart,
Big thank you for the new web site.
I am finding the discussion forum, very slow to load,compared to the old one and the last new one: both on an apple mac and windows xp. Am I the only one experiencing this slow loading of any page on here?
Used to be able to click and see, now there is a considerable delay after click!
Min
I love it Gaye so much so I have ha to steel your photo for my facebook !
Just wish that was the kind of snow we had, It is now over a week of daily snow and freezing temperatures.
WE are sick of it. Driving is a nightmare. Walking is exhausting. The central heating is on 24hrs, Where is the Global Warming?
Min
Roz,
Peter does not talk much to me about his mm, and having been off work for 18months he was pretty much reliant on me for any conversation.
His boss came round on 2 or three occasions in all that time and he chatted to him, then his boss got bowel cancer and started on Chemo etc.
There conversations now are weekly, comparing treatments feeling and hospitals and he opens up to him, explaining to me that
[u]'I cannot understand in the same way as someone who has cancer so whilst he is sorry, for not being able to talk to me he cannot burden me with even more than he has already."[/u]
Initialy I was a little hurt but true enough he has been through so much. He does not live in my pocket so to speak so have to just wait for an appropriate moment to cover the subject in a sensitive way. I have no idea when that moment will happen but I am confident it will.
I think its a man thing, and time will tell if we can break through this barrier.
Don't worry just be glad he can open up to someone. He is used to looking after you, not being looked after and that a lot to get your head around.
Sorry I did not intend to underline it was meant to be italics but cant undo it
Min
Here is the photo of our snow
Thanks for that advice David . Don't have time to read papers these days but can surf e bay and have ordered 2 pairs one for each of us.
Just learned that I can apply for redundancy so will finally find time to read the Papers if I get accepted woopee do
Min
The powders peter was given sound like the ones Bridgest speaks of and they are called PRO-CAL. Peter used them when he lost over 4 stone in weight. Only on prescription and really are tasteless.
Your dietician nutritionist or Macmillan nurse can decide if they are suitable for you. In the mean while tuck into Bacon and Eggs, and all those things those of us who are trying to lose weight yearn for!
Incidently Peter has his cholesterol counted regularly due to a bypass and takes statins. High fat food did not affect his cholesterol one bit. In fact they brought it down from a dangerous 14 to just over 4.
Take advise always before embarking on a new diet just in case
MIn
Well you sound really Perky—–get it. Keep it up and you will be home before you know it.
David, love your choice of music to get those cells seated, but need some soothing music to let them rest once they find there way home. Not so much of the rock as serenades. Don't want them jumping off ship
Don't you think they are amazingly clever knowing where to go when they get in the bloodstream. Having been in the freezer they have the right idea. its snowing non stop here in the north east and darn freezing. So Enjoy the heat in your 'private' ward, make the most of the next few days as things will change a little when those clever cells bed in and start working. Wish you all the best.
Good Luck
Min
Peters started his second cycle of velcade yesterday, and today he is breathless so its obviously the velcade thats causing it. But not unbearable. However he is back to using his stick as a result to rest on as he cannot walk far again.
Update on the tank…. he is using it to chase the cats who are terrified of it. But as a passtime it takes his mind of his mm so hey ho.
Fortunatly he plays with it mostly when I am at work so not bothering me too much.Yet….
Min
Hi Norman
Firstly, look up on this site http://www.myeloma.org.uk/intro-to-myeloma/myeloma-news/ News about zometa.
A biphosphonate that my husband has been on for 18months now. He has a drip in the day unit every 6 weeks and it takes about 30minutes, following which he usualy feels as if it helps with his bone pain. His consultant has several patients where it has caused osteocronosis of the jaw, hence the reason he only has it 6 weekly.
Having said that whilst its purpose is to prevent further bone damage, he has in fact had another crushed vertibra since being on it.
If you are on steroids (I suspect Dexamethazone) I believe steroids can cause bone damage on there own never mind the MM diagnosis which will often cause bone damage too.
I believe its main purpose is to prevent the osteoporosis that is caused by steroids as well as the damage that the disease does to your bones.
Prior to his mm diagnosis my husband was on massive daily doses of steroids for his kidney problems which probably contributed to his bone damage. A dexa test will tell you if you have osteoporosis and is very quick and normaly easily obtained at your request.
We just rang up an osteoporosis nurse specialist and made an appointment without any reference to a Dr. He was seen in two days for it. (on the nhs)
and I learnt about it on a NHS website for the local trauma unit. I was in the room when he had it done and its like a low level x ray but while you lie on a bed, but with more detail.
Always handy if you have to wait a very long time for mri scans etc.
Sorry for being so long winded but want to cover all the options for you
MIn
Hi David
Your five star accommodation sounds just like the one Peter would have had if they had not sent him home after 3 days!!!! to do his isolation. It was a lovely room with en suite tv, even a games console in the drawer. Plus his own fridge.
The day has arrived and all the waiting is over. bit like waiting to get married !!!!! It will be over before you know it.
All the best to you and hope it is a non event from the point of view don't have any setbacks.
Your appetite should be just right by Christmas. Good Luck
Min
Roz,
Im so sorry for all that you and Michael have and are going through. It makes me angry to hear of them not keeping you informed. In this day and age its a perfectly normal expectation.
I cant see any reason why the consultant cant ring you, or you ring him. Its not the ideal situation but its better than sitting waiting and worrying.
a Face to face meeting wold be better but a phone call can at least put your mind at rest or at the very least give you the information you need move forward.
Is there a chance that your/his Macmillan nurse could act at a go between you and the consultant? At time like these they can be a god send and if Michael is to come home you will definatly need them. Sleep on it tonight and make things happen instead of waiting for them to tell you.
Its not being in control that makes things so much harder to deal with. I don't know how you are coping but if it was me I would be getting angry at this stage. Through shear frustration if for no other reason
I do hope you will get some better news soon Roz.
Min
You know what John, while I was doing some research and ordering one for Christmas,on the internet. He went out and bought one himself. It is darn clever fires bullets and sounds like a real tank. (look up heng long tiger tank) Now I have another one coming so will have to play with him… read into that what you wish!
ON a serious note this is his week off velcade and apart from being tired, and up several times during the night. Any one got a cure for that! He is no longer breathless. I am with exasperation and anticipation of playing war games.
Wow Bridget
Your team are certainly on the button, Its great to hear your news, What would the surgical remedy be? did they tell you.
I dont know what damage you have, but I do know how with 5 vertibra crushed Peter is in constant pain.
It went away for a while after his 1st kyphoplasty but the pain returned 6months later. did not know then that this was due to further damage, which will be repaired on 9th Dec all being well.
Please keep us informed on what is planned
Good Luck
Min
