Hear hear Its very useful for hospital appointments but Peter is not venturing very far these days. Although he did drag me to the cinema earlier this week for his Harry Potter fix.
Min
Hi Peggy
Good luck with your mammoth pill party! someone wrote on here to put them all in a carton of yogurt then they go down easier.
£40 0000 Because your worth it…..Revlamid is so easy to use from the point of view of your not tied to attending a clinic or day unit twice a week. so much less tying. But still makes you very tired too.
The daily heparin injections are easy once you get used to them, the thing is not to pinch too much or you give yourself bruises. Be gentle with yourself, the needles are so fine you wont feel it. Or thats what I used to tell my husband when I did it for him LOL. I got sick of hearing him tell me i hurt so he did it all himself. Became a habit with the evening news as his warning time.
Best of luck with it all
Min
Hi Sarah,
On heavens if its not one thing its another with these men of ours. They cant just get one thing wrong with them it has to be a dramatic illness and one that drives us the carer out of our mind!
Blue badge… 5 days best thing we ever got out of him getting the blu*y illness. Now he has it you need to go on and get the other things like Disability living allowance. (Shy bairns get nowt) He has worked all his life and is entitled to it. Unless he is too old but theres an allowance for that too. I even get carers allowance now I am not working.
I have to say in the past few weeks I have earned it too. cutting the lawns and ironing his many shirts and fetching and carrying this that and the other to name just a tiny few. Why don't we have a post about these allowances we can claim?
Now he is getting better we have to go through it all over again in a few weeks UGH
Gordon will have to get a set of steps built to get him into his tractor then he can plough to his hearts content once he gets home. Hope he gets home soon
Love MIn
Hi Martin,
Sorry to hear about your Dad, my husband has MM and kidney damage from it, along with bone damage.
In truth I think only a Dr can give you the answer you want, but even then as mm is not something like High blood pressure where they know if they give you x then the result wilt be Y .
MM is far more complicated and unpredictable. But there are many ways of getting fluids into a man who wont drink. From experience water is not the be all and end all. Fluids are the key. He may be a Tea man or even a beer man. Soda water spring water 'pop' as we call canned drinks! Whatever it takes.
The reason for the fluids is the GFR. complicated but its about getting the calcium out of his kidneys which will become blocked and the quickest way to do this is to flush them out. With whatever fluids he can get down him. fruit juices flavoured waters etc you get the picture. Once they flushed regularly and with the help of steroids.. the dreaded Dex or maybe prednisalone there will be an improvement. Most important is to cut out salt.
Has he had X-rays? does he have bone damage? Pain killers usually mean bone damage! ; Is he on a bone strengthener? Zometa is not given to patients with kidney damage but there is another type which takes a little longer to infuse but does the same task without causing further damage.
This will also help stop the calcium releasing into his bloodstream, and make him feel better sooner.
Can I suggest getting a few bottle of water, its a brilliant method of measuring the intake for him too as he will have a guide of what quantity he needs to consume even if it means boiling it to make tea. After that you can fill them from the tap and he can work out for himself how much fluid he needs to keep well.
Dont despair, I know your Dad is getting on but don't write him off, as lots of people live well with mm and kidney problems. A little re training will hopefully get on top of the problems and he can get back to how he was within reason. I do hope you see an improvement soon and your Dad gets home again
Regards
Min
Sorry Jet typing error,don't watch the screen oops it was GCSF injections, just to help the stem cells that are being transplanted and make a few more.
ps like the bold bald look it suits you
Min
Hi Jet.
Good luck for the SCT and hope its a walk in the park so to speak. Peter my mm man, had his stem cells given at 9am and was home by 3pm and did all of his recovery at home. Stupid man even cut the lawn when he got home. But no one told him he should not. He had a week of being off his food and very tired where he slept a lot but otherwise he was fine. He spent a lot of time before the SCT getting himself in 'shape' and fit and healthy so the Prof thought he could be just as well at home, returning every other day for blood tests. never needed any medication other than CSSF injections and a small dose of anti biotics for an infection on the site of the canula. (No central line or pick line for him)
My advise would be small amounts of exercise (Peter has 4 crushed vertebra and kidney damage so he could not do anything too strenuous) as if you are fit, and in reasonable health you may recover quicker, as the body will be in tip top condition before they stick the boot in with the melphalan LOL. He was made to suck ice lollies as the melphalan went in in order to prevent mouth problems. He had no mouth problems at all. Might ask you nurse if you need to bring some in? Do not eat or drink any citrus fruit or juice after the melphalan as they warned him he would be sick. He had grapefruit the day of the melphalan for breakfast and spent the next two hours on the big white telephone
MIn
Hi Eve
Thanks for asking we are plodding along, Peter's appetite is improving daily and he is doing some small weights to try to build up his strength. Blood appointment tomorrow to see if he needs another bag of blood or two. I feel most likely as he can sleep for England. Then another two weeks before the next clinic appointment.
Im back on the kitchen research, to pass the time as it is raining here and has done every day for 5days now. Just got home from seeing Harry Potter movie… Very Dark not my kind of movie but note ….. it cost nothing to see as Peter has DLA and for a modest sum you can get card that allows him to take a carer..(thats me) for free, to the cinema. But by the time you buy the 12 inch hot dog and giant popcorn they get it back!
Min
Hi Eve
We have been going through a ton of food lately most of it into the 3 dogs!
I bought everything he normally likes and he didn't want it, or anything else. Then I made him porridge with milk that had gone off( I swear I didn't know) but it gave him 24hrs of D and S lots of vomiting and loo runs. Oh dear was I in the dog house.
On the plus side it cleaned him out and now he is back to eating normally, and has a good appetite again. Just as well as I was eating for him to try and entice him to feel hungry` We still have occasional days of unexplained vomiting but he is fine after its up.
love Min
Hi John
You are so lucky that you asymptomatic, long may it last as the alternative is to start on a regime of medication which is rather debilitating in many ways.
The main thing is you are being monitored and if your situation changes they will step in and start treatment. Just make sure your fit as its possible to be, and the intensive treatment will not be so devastating.
Allow yourself the opportunity to gain a small amount of weight when it starts so that when the bad time come; by that I mean the weeks that you are unable to eat anything, loss of wight will be of no significance.
Meanwhile enjoy the time without any medication as its a roller coaster ride when you do start on it.
Long may you present good health continue. But when you do commence treatment your consultant will tell you what way to go
Min
Dai
I can just picture you looking like a spotty pin cushion. Knowing what peter looked like when he was in a few weeks ago after several attempts at canulas then them wanting blood while he was hooked up to a drip. He was sick to death LOL of needles. His arms are now fully recovered just in time for the next lot.
I hope you remain temperature and germ/infection free.
Peter was asked to hop on a bike and do a 'breath' heart lung function test before his last 2bags of blood, to see what the difference was. Initialy he agreed then realised he was too week to do it so better luck next time.
Its lovely to be drug free and side effects and symptom free for a while almost feels like being normal! Hope your feeling 'normal' now and remain so.
Min
Hi Gill
I was once very differnt to how I am now and similarly Peter was too. He was a man with no temper, and slow to rile. Now he responds with the occasional burst of anger.
I was the one who went off it often, but I seem to have mellowed. I have changed but I defy anyone affected in any way by this blu-dy disease and not find themselves with a different personality, long learning curve for us all.
I never saw myself as a carer of any kind and am constantly amazed at what I find myself doing that I never in my wildest dreams could have imagined. I am not blowing my own trumpet by any means but I often catch myself reflecting on my behavior and responses to events and feel like looking in the mirror to see if Ive had a face transplant as well as a personality transplant!
Anon Min
Hi
Ive just been away on a quick breakaway, to my daughter and grandchildren in Warks. Cant see any activity on Bridgets facebook so sent her a message.
Min
Hi Dai
Amy obviosly inherited her talent from her dad, you must be very proud of her and I am sure some time soon you will be on a plane to go watch her wow the crowds.
It sounds like she has a very exciting life and hope it continues for quite some time.
Love the sound of her voice and your accompaniment
Cheers
Min
Hi Claire,
Its good that your mum has been diagnosed early, as many are not and the treatment for a late diagnosis is not pleasant. But in you mums case. It sounds like she has a smouldering kind, which means the professionals watch and wait.
There is no point in starting treatment if it is not yet necessary. Far more pleasant for you mum and presumably she is relatively symptom free. Other than being very tired and having lots of infections perhaps?
If this is not the case they will commence treatment before it starts to invade her bones etc. Perhaps she is getting some help to ensure she gets no bone damage as that is the thing that causes the most symptoms. IE Dreadful Pain.
Hope this helps and perhaps you could go with her and ask the nurses next time she attends for blood tests
Best wishes
Min
Hi Susanah
Im really interested as indeed will others on here in the same position as Gordon and Sarah. My husband is what I thought of or think of as at the last chance saloon. Having has a failed sct, velcade and revlamid. All of which worked for a very short time. His current treatment fills me with dread for what happens next. But it is remarkable to hear of someone in your husbands position.
What treatments has he had and how long did they last? what kind of mm does he have? Does he have bone damage and or kidney impairment?
Sorry for all the questions but you have given me hope.
Min
