Gaye
There you go blazing the trail for the rest to follow. Peter was meant to have a second balloon kyphoplasty in Dec and two days before it had to be cancelled, because of his darned newly acquired thrombosis. He was absolutely gutted as the relief from the first op where two were done was brilliant for him. His D dymmer numbers are getting better so he may still get it.
Its his legs ankles and feet that swell up with the kidney damage so he finds it painful to move about when the skin is pulled tight. (Imagine yourself with swollen fingers and how uncomfortable it is.
Have got him back on the Aciclovir …. don't know why he stopped it really, But there is so much information to take in when on new medication and the normal chemo treatment book that usually outlines all of the current treatment was forgotten about this time.
He likes to see things in black and white as a reminder, I like to see it to reinforce my nagging of him.
luv Min
Dear Bridget
Send your other half to the pub on Tuesdays so you can watch in peace and on a big screen. Peters clinic days are Tuesdays ,so egg and chips and the hand control are my idea of heaven on Tuesday evenings. Have been known to go to bed very early in order to watch undisturbed. Otherwise its Sunday morning while doing the ironing.
I have even spent time teaching my other half how to surf the net for stuff he likes………………….(remote controlled tanks) just so he does not speak to me to interrupt the TV. As he is a total novice I find stuff I know he will like and send him links by e mail. I am dragging him kicking and screaming into the techno age and today he asked me to show him how to buy something… Now that is progress.
luv min
Gaye,
Im not a fan Im afraid, work in a Scenes of Crime office and hope it does not alarm anyone because unexplained deaths are sadly regular events…. Well actualy its burglaries and car crime. When I used to watch it with the previous main character it was so far from the truth I lost interest.
But I do love Holby have watched it since it sprung from 'Casualty' and although the amount of people who come to harm in the car parks of these hospitals makes me wonder,but its a good bit of escapism.
Bridget this will really confuse the newcomers on the home page .
Min
Whew Sarah,
I would be beside myself with worry now, I hope they are ok and keeping in touch with you to allay your fears. Kids who'd have them!
Min
Thanks Bridget, he is taking his lansaprazole for no other reason than he has been getting dreadful heartburn and indigestion since starting the Revlamid, he should not need it as he came off the aspirin when he went onto daily heparin injections. But I will get him back on the Aciclavir. He also has started an itchy head, anyone know if itching is another side effect ? On the plus side in the time I took to do some surfing his water tablets frusimide have been doing there thing and he is a little slimmer, probably be up all night going to the loo as he left it rather late to take them.OOps. I hate this darned disease and the problems it causes.
Luv min
Happy Birthday to you Bridget,
Im sure you had a lovely day with the grandchildren, and never mind if your knackered you can have a lie in tomorrow.
I have had a lie in all this week and its a wonderful thing I could get used to. Once I get my bus pass I will be lying in more often. OOps wishing my life away.
I hope you get on with the dex and Revlamid and at least you can have it in the comfort of your own home.
Luv Min
Dear Gaye
Now you know why you had all the pain. Im surprised that you did not have raised calcium levels prior to the scan.
Im sure they will get to grips with it soon and hopefully you have the correct pain killers to make you comfortable without being comatose!
Its interesting from the point of view that you must be on Zometa or some similar type of bone protection. Peter got an additional crush fracture at the end of last year, in my ignorance I thought biphosphonates were given to prevent further bone problems. Whilst I feel for you and the pain you must be suffering it is kind of comforting to know that he is not the only one on bone protection who has managed to succeed in getting another crush fracture. I thought he was a freak; Tiresome as it is, do you have any kidney damage?
Peter has just blown up…. metaphorically speaking! His lower half is totally water logged and its very worrying, he is just one week into Revlamid and hoped it would be as smooth as CDT. I was chatting to the nurse during Peters last consultation and failed to hear if he should be still taking the Acilavor that was prescribed for 6 months when he started the Velcade. That being a chemo and Revlamid not being chemo. Any one got any advise here?
Don't want it to go pear shape like velcade.
Min
Hi Gill,
I know exactly how you feel, Peter's revlamid and dex is causing some problems. Fortunatly the dex bit is over with now, but the Revlamid is causing a lot of fatigue and very swollen legs ankles and feet.So much so he had given up work again. We were told that the 1st course will be difficult but it is so dissapointing when he was so well before the blasted medication started.
I am pleased you finaly have the new puppy and I am sure you will see a change soon. My old dog (was two at the time )was not happy when I introduced a new puppy, (female) and food was a problem as the puppy was being fed more frequently. I think if Echo gets lots of extra attention the jealously will lesson. Good luck, they are a marvelous distraction to the annoyance of mm and how much it rules your life when back in treatment had problems posting as wont let me call my female dog a bit*h!
MIn
You were right. He is back to 'normal' whatever that is. Sleeping better and dexing as normal. >:-( last day tomorrow. Eating me out of house and home. (Never put any weight on while on velcade and dex) but never had any munchies with it either.
The sciatica is getting better having used a Tens machine… Could get addicted to that.>:-)
Thanks folks will keep you posted how it progresses… I mean the Revlamid not the sciatica!
Min
Thanks Sarah,
My son came round today and did something sort of remarkable. 1st of all he made me lie on the floor, then he taught me a Pilates exercise for my back and leg pain. and it worked. so far so good. All of a sudden I was transported to that moment when your children start to give you advise. Not that he is a child at 34yr old. But the fact that I took his advise and it worked made me think…I must be getting old.
So is Gordon not still taking Revlamid as maintenance? Peter was told he would be on it forever until it stopped working.
Min
Hi Bridget,
Now that the RT is over you can either relax and recharge your batteries or have a party. If it were me I would be relaxing.
Hope its not too long before the effects of all your travels and traumas take effect and your pain free.
Peter RT was effective after about 4-5 weeks but everyone is different so may be sooner for you. Meanwhile Just relax and chill out now the journeys to RT have finished.
Min
Well first things first, peter slept well until 4-30am when he woke up with violent diar—-trots. cant spell it! Then he got up to go to work, only does 3 hours but has not been feeling up to up for 5 days now . At 8am he crawled back into bed having just taken a sicky tablet as he wanted to throw up. Altogether not a good start. He is sleeping now and will see how he goes. We were told the 1st month could be difficult. mmmmm
As for the lolling tongue, That is Benjamin, my oldest dog who has been suffering with old age and is now becoming friskier. He is my very best friend and I can tell him all my secrets and know for sure he will not tell anyone! When I am down he makes me happy. I am down now because of this bloody sciatica, and peters new problems. Knew this would happen as Family want me to make decisions on how to celebrate 60th birthday and 40th wedding anniversary. I don't want to make plans and don't want to disappoint so stuck between a rock and a hard place.
Miserably
Min
Gaye
That was very moving, and in a way helps me to understand how my husband has been dealing with his mm.
he is very private and at the outset did not want me to tell anyone what was wrong with him.
I on the other hand am an open book. If its out its not festering inside me.
I remember when he was diagnosed. I went home in distress more because I did not want to tell my children, I dwelt on the part of the Diagnosis which said I can give him 3-5 years and could only think of me.
I still get distressed when things don't go according to plan.
What I have learned from this disease is to be open. Whilst its my husband today it will be someone else's father mother sister brother tomorrow. Cancer before Peters diagnosis was something that happened to other people.
I talk a lot about it at work to whoever will listen as there are so many taboo's about cancer. The Taboos I realise are because no one talks about it.
You would think it was a sexually transmitted disease the way people whisper the word. Or they will say do you remember so and so who had cancer. So and so was more than a cancer sufferer and should not be remembered for having got cancer. Here I go again on my high horse.
Im pleased your out of the closet and even more pleased your able to share your journey with us and offer us your guidance. Keep on keeping on Gaye, and long may you be sharing your thoughts with us
Luv
Min
NIce to see you Joe, I am pleased you did it, the moon face is familiar to me as Peter has it at the moment.
According to the Dr Peters kidneys are ok, or at least the figures show that, in truth he has puffy eyes on almost a daily basis,(great big bags under them) its like pulling a pint with regards to froth. And the oil slick left after flushing is sometimes frightening. Depending on wether he has a bacon sandwich he has to deal with swollen ankles. I am told that this is something that will not go away.
He got his 1st Revalmid today at clinic and the base line for his light chains in a frightening 8750. Done two weeks ago so it can be assumed that today it is probably higher.
But as there is no damage to any other organs its manageable provided the Revlamid works. Apart from feeing very tired.(Thats before he starts the treatment) he is reasonably fine. His kidney problems were nephrotic syndrome and never got to worrying about dialysis, but the size of his swollen body and legs was very very worrying.
Regards
Min
Hi Laura,
Im so sorry you find yourself joining our little group. But I am glad you found your way here. You sound like an amazing young person who has your Mum at heart. For that reason I hope that she reaches the end of her treatment with your help, and you can both get on with living your lives again.
Laura do you have any support from a Macmillan nurse? If you do please let her know how your mum is coping, and more importantly how your coping with your Mum. If you dont have the support of a Mcmillan nurse can I suggest that next time you visit the hospital you find the courage to ask your Mums myeloma nurse specialist to refer you. Yes you. To one. Once you have had the opportunity to chat to to someone like this you can refer your Mum too,. Mcmillan nurses are there for the cancer sufferer and their carers and have at there disposal a number of tools, courses and therapies that both you and your Mum will find beneficial.
More importantly they are professional in there aproach and will help your Mum to overcome her fears and depression.
A friend of mine attends a hospice where she has a variety of treatments like head massages and hot stone therapies. There are many others and they can be very usefull.
I sincerely hope you find some answers. Everyone has there own way of coping with this disease and I understand how she feels. My husband was similar. Why me. What have I done to deserve this? with no answers that help,when you are in that frame of mind. He is in a much better mental state now, realizing that there is no understanding why certain people are stricken with it.
Let us know how you get on and keep in touch when you feel you need a shoulder to lean on. Your welfare is just as important as your Mums.
Regards
Min
