Hi Eve.
Don't they just drive you mad with worry with there attitude to illness.
I buy fizzy water, flavoured still water and 7up. The 7 up is supposedly approved as being full of beneficial salts. Don't know how true that is but, Peter was up all night with a sort of bug. Difficult to know if its a sickness and trots or just the normal start of a new cycle of drugs which brings this on. I have noticed that when he finishes the 4days of dex he gets sickness and diarrhoea it goes after a few days but it always creeps up and knocks the stuffing out of him. Fizzy plain water and still flavoured water, plus 7 up normally help to keep him hydrated because of his kidney damage.
Be careful with the energy drinks as they have so much stuff in them to give you energy when all he needs is to rest in reality. You know its all about liquids there are a variety of flavoured tea's that you only need to put in hot water and the flavours are enormous you can let them go cold too. It just makes a change from plain old water.
I am sure he will learn that its best to do as he is told or end up in hospital. Not a pleasant place unless your really ill. He has to show the medical staff he is able to follow instructions too or the possibility of a transplant could be compromised.
I hope the rest of the holiday is better for you both
Min
Looks like my dog Ben Happy Easter
luv Min
Brilliant news Gill, Im very pleased for you both,
Min
Hi Sarah,
He had developed DVTs as a result of velcade in both legs and they went off into his lungs where they said there was so many clots in his lungs there were too many to count. Revlamid is a drug your on potentially and hopefully for ever. Thrombosis is one of the side effects so as long as he is on it he will be on heparin. 6months of a high dose then prophylactic small dose. He has been on warfarin in the past but hated the side effects and additional hospital visits to keep it under control. He drives me mad but hey at least he is still here to drive me mad! He is on top disability allowance and because I worked full time I could not claim it before.
Fog horn blasting out all evening and afternoon…..Bliss!
love min
Gill, I think that is an excellent idea, would it be a mother hen party? as we fuss around them like mother hens.
Jo The chill was caused by the IV immunoglobulin they gave him to allow him to go on holiday, he had a really bad fever from it and woke up bathed is sweat then had to change the bed it was so wet' The chill turned into cold and the chest infection followed. He is on the last of his anti biotics and feeling good. Got his blood results back today from Tuesdays clinic …Bloods are all AOK and his immune system has made a dramatic recovery following the IVIG. Light chains just a drop of 40 but better than nothing.
The sea fret is dreadful here and makes the air cold and wet. Most definatly going to do a 'down south' holiday when I recover from the holiday from hell.
I don't care if we have to go to a hospital in an Emergency as long as they speak English and can ring his Dr in Newcastle I just want the comfort of the UK security blanket, If you know what I mean.
Seriously seriously thinking of moving back down south.
Thanks for the thoughts friends,
love min
Hi Jean,
Its good news mostly then, I had a wry smile when you mentioned red rag to a bull. These men can be such a pain in the kneck when it comes to their health.
Enjoy you Easter and your new Grand daughter and family. Don't waste your energy worrying until you have to, thats where I went wrong. Im in a permanent state of worry mostly because he wont do as he is told, or cant remember what he was told! By the Dr not me. Just as well I go with him or he would do just as he likes.
Take Care
Min
ps Mavis the pain my husband has is due to bone damage. Crushed vertebrae's due to the disease eating its way thru the bone.
Hi Sarah
I have strong memories of administering Peter GCSf before his harvest, ugh it was awful ; and he had dreadful bone pain and back pain in particular, then of course he blamed me for giving it to him. He is now on daily heparin injections for the rest of his life following pulmonary embolisms from velcade. I refuse to do them when he whinsed and bled so he does his own now. Lucky Gordon having a nurse on hand.
How is retirement going?
I am now officially a Carer as the job centre recommended it rather than job seekers allowance. Does that mean I have government approval to nag?
love from the north bathed in sea fret. Cant see the sun for it.
Min
Hi Debs
Peter is like Bridget with a constantly snotty nose while on or off medication. He is not a sufferer of sinus but I have been plagued by it and the best relief is a bowl of boiling water and a towel over the head and sniff in the fumes. Clears the sinus's at no cost. Friars balsam is a good addition to the water but a bugger to wash off the bowl! I had a back tooth out and the Dr at the dental hospital said I would never suffer again from sinus once it was out and she was right. How odd is that?
Hi Caroline
I have been where you are now and its not pleasant. As Bridget says there are other forms of pain killers and getting the dose right is not easy.
I am sure once he is re- assessed for a more appropriate pain killer life will improve. Meanwhile keep your sanity intact with us whenever you need to
Love Min
Keith……..
What can I say been on a crappy holiday, wish I had stayed home and read your post instead. What brilliant good news
So pleased the velcade has worked for you. Its is remarkable how some of these medications work for some and not for others. Will your transplant be in the Freeman? It has excellent facilities, Lucky you to see jane Conn again she is a lovely lady. Might drop in on you on a clinic day?
Take Care mate
Min
Dear Gill,
What can I say to ease the heartache I understand you will be going through. I have always thought of your Stephen and my Peter as being in the same boat, similar age bone damage etc.
If it is of any help at all, Velcade did not touch the sides of Peters mm, giving him the added problems of Pulmonary embolisms, and therefore additional medication.
BUT he has responded amazingly to Revlamid which in many ways is very similar to Thalidomide which Steven responded well to.
Don't give up hope until there is non. How can they know how well he will respond to Revalmid? It is a wonder drug and worth a try.
It has some unpleasant side effects in the first two months but after that it gets easier.
On the plus side not so much Dex to take with it too. Don't give up Gill and don't let them give up on Stephen either.I know your devastated but have hope that the Dr is wrong and Stephen and you can now get a break in you beloved France as Revlamid will allow you to detach yourself from the hospital for at least 4 weeks.
Im rooting for you both Gill and refuse to believe the Dr can see that far ahead. Peters light chains went up to a recorded high of over 8thousand on Velcade and the consultant said could have been up to 10thousand by the time he started on the Revlamid, the 1st course brought this down to under 2 thousand, Im hoping that Steven can respond as well too.
Get the tablets and run of to your France to recover from this blow and show them that he is still willing to fight.
Love Min
Its human immunogloblulin. Peter was having a few infections tummy bugs etc and taking a long time to shake them off.
We asked if we could go on holiday for or 40th wedding anniversary and the 'man' (consultant) arranged this so we could go away and he not be at risk of infection. I believe its basically a bit of several persons immune system. I think now he is on it it may be a permanent thing. Like zometa. He is otherwise well but worried the hell out of me when I got in the bed and it was soaking worse than it ever was at the outset.
MIn
ps SAT am found t on NHS website and fevers and chills are a side effect. But he is fine now. thanks
Hi Liz and welcome to our unique little club, shame that all of us wish we weren't in this club, but you are amongs friends.
Apart from diagnosis, I think sct time for those of us left to worry about a sufferer of mm is the worst and most worrying. We worry before during and after. Sometimes its not necessary, other times its soooo distressing. Just wish I could do it for him, there again no; don't think I could go through what these brave souls do.
Best just to sit quietly when he feels this rotten and wait till he's well enough for nagging! He has the summer to look forward too, and so not so many cold bugs around. He will be home in about three weeks or less.
Dont do what I did and do retail therapy. I bought an Apple Mac computer even though I hadn't a clue how to use it. Thought it would take my mind off worrying……….Big mistake. Should have bought shoes instead.
TAke Care
Min
Oh Bridget so like me, I used underarm spray on my hair and went from blonde to white
Dear Gill
I had to laugh because Steven sounds just like Peter, he did the same with his anti sickness tablets. Waits till he is sick then takes them!! so I had a good laugh at your frustration. Don't worry its an attention thing, my man was sweating so much in bed last night I thought we were going to float off, when I woke him to check his temperature he was well cheesed off. The picture is him with our 3 dogs
Drag the pee pads nearer to the door on a daily basis until you have them outside and you will have cracked it. I used to cover them with pebbles so she could still smell them and got used to using them outdoors. Your getting there and the sun is shining here and we go on holiday in 2 days. Only waited a year for it so cant wait.
luvmin
