Hi Kathleen,
I know exactly what you mean.
I have found myself sitting watching the tv with clenched teeth and the muscles in my neck going into spasm. The annoying thing is its not even a programme to get uptight about. Just cannot relax. More recently realise a glass of the hard stuff helps but cant be doing that all day every day so will one day have to get some counselling or diazepam…
Min
Hi Bridget, He had a cough last month when we were on holiday and does do a bit of it when on the 'week off' But all the other side effects which on there own are manageable but when pushed together become a 'bore' Lots of cramp if not enough fluid intake, feeling sick often. Daihhoria frequently with no understanding what has caused it food wise. Mood swings.
He often goes out to cut the grass and gets carried away, then suffers for days afterwards with extra pain. Followed usually by Hot sweating flushes.
It is a bleeding awful lot of little annoying things non of which is sufficiently hard to deal with, but when they all come at once
Depressing for me to watch. In two years there has now only been 5months with no medication and its soul destroying. I feel like the clock is ticking time away and he is never well enough for long enough to just enjoy life.
I love my garden but Im determined to decorate and its too tiring to just get it done so have a day off in-between and its taking for ever. Took me 4days to do the en suite and alter a blind to fit the window. Hey Ho, used to be able to do this sort of thing in a day…… my energy just got up and went
Love MIn
Bridget I think its the Revlamid…….
There are rarely two days alike for Peter. There is no rhyme or reason as to what he will feel like or when.
Used to be able to know it was a certain stage of his medication but that is no longer the case. Some days he is full of energy and then he goes downhill fast and has to spent the day in bed. No idea why!
Pleased the pain has run away for a while and hope it gets lost!
love Min
Hi Eve
I hope today had been a little better for you and slim. I am thinking of you both
Min
Hi Dai
When Peter was on velcade in October last year, he was well enough to go to work daily. Only for 3hrs per day but it was more about the social contact. He had no sickness or tiredness, BUT after his 1st injection he became breathlss. It took several weeks to discover that he had developed pulminary embolisms caused by velcade. He had 4 cycles and the 1st two produced otherwise good results. Unfortunatly it stopped working. He is on his 4th cycle of Revlamid which has far more sde effects.
Good Luck, on the new part of your journey hope its successful for you.
Min
Hi Angelina,
I do believe in the' mumbo jumbo' do you know a number or whatever for stress anxiety.
I am not being patronising, but if there is an equivalent 'Angel Charm" for the terrific amount of stress I am putting myself under I would love to learn more.
Thanks
Min
Hi Bridget
Im awake, sleepless and ready to listen Thats what happens when your retired and don't have to get up for work in the morning……… You know how it is in the middle of the night and everything looks bad? After a good nights sleep everything looks better.
I think you have seriously overdone it with the housework and your body is telling you off! On the other hand you know your body, and its obviously worrying you so best do what you know you have to; ring the Hospital tomorrow if you still feel the same when you wake up. Your news about your light chains in probably playing over and over in you mind to add to you concerns. No point in prolonging the agony for yourself if there is something amiss. If you cant bear to do it on Sunday speak to your nurse specialist on Monday morning or leave a message for her to ring you back.
You know you cant ignore it until your next clinic so why wait?
Hope you manage to drop off and get some sleep
Love Min
DAI
I only just worked out how to play it……….duh. I had several unsuccessful attempts and gave up but when I saw other posts I realised it must work.
It sounds extremely professional and you look incredibly healthy in that profile photo.
Big well done
ps bought Adele 21 today its brill first CD I have bought in years!
Min
Dear Eve
I feel for you and the frustrating and annoying situation you find yourself in.
1st things 1st go and find the pals (patient liason) department and jump up and down. Make very loud noises and make sure a lot of people are listening.
Make your voice heard in the ward when you see some of the major problems dont worry if the other patients and visitors hear what is being said if there is a genuine problem they will not want all of them up in arms too.
Which hospital is slim in? sound disgusting and needs for other people to find out if thing are very wrong.
When my mother was in a district hopital on a ward with having had a stroke C Diff was rife.I witnessed a nurse change a stoma bag on patient and then go to the next bed and take out a patients false teeth while wearing the same gloves!!!!!!!!!!!! I shouted at her and made such a fuss there were immediate changes. I made it loud and clear that when I left there I was going to speak to the member of parliamenent. Might sound strange but Hospital management have to be answerable to someone.
If it is so very bad, ring the local newspaper, or the tabloids and get them to come along and photograph the problems with you. Its amazing what some bad publicity can do to recitfy major identifiable problems.
Where is the consultant who looks after him in all this? is he in the same hospital. If not get in touch with him.
I know your probably freaking out watching what is happening and f nothing else your anger can be used to do some good for all of the patients.
I am not forgetting poor Slim. I watched my husband at the outset of this bludy annoying illness with pneumonia in hospital with the worries of infections but at least he was in an excelent place of care compared to Slim. He is obviously not able to help himself at this moment, so its down to you. Camp out with him, dont leave until you get some answers or changes in his care. Keep your chin up girl you will get thru this, be posative and take care of your needs too; You dont want to find yourself being ill as a result of the stress you must be under so take some time out and get your daughter to do some visiting to give you a much needed break.
Take Care
luv Min
Hi Eve
How is married life now your an old married woman?
I do hope slim is on the mend and out of the 'deep water'. I cant imagine how you have been able to deal with his recent hospital stay.
I am just hoping you too are ok. Its so stressful when your loved ones laid up in hospital, Im sure he is in good hands and or on his way home soon. Please let us know how you are both doing and sending my best to you both.
Regards Min
Hi Bridget
Weird aye, does that mean your a one off or one of many weirdo's. Just having mm consignes mm sufferers to weird as no body knows what the heck it is!
Im sorry to hear of your rise in light chains; but is that significant if you don't have Light chains? Oh its all so complicated, and don't know if I want to break the public holiday mood (wedding fever still going on in my home) and give any thought to MM. Peter has had a few bad days staying in bed but now well so spoiling the visit by the grandchildren… A bloody pox on this myeloma… He has today made a recovery but its so unpredictable. There doesn't seem to be a week when it was the same as last week.
If your going to be spending some time in an mri I recommend humour for the earphones. Billy Connoly would be good but don't know if you would be able to lie still with him in your ears.
Im sending you good wishes that the Revlamid is just having a blip of some kind and you learn soon if its doing you good.
Love
MIn
very Funny
Hi Bridget,
Hows it going with Revlamid? Peter is 'feeling ' really good on second week of 4th course. 1st week still washes him out a bit. But once its over he picks up really well. Still very 'snotty' especially at mealtimes and if he hits any cold air. Have to keep him out of the freezer aisle. HIs back has been really good since he lay in the mediteranean sun. Or perhaps its the glucosamine I got us both on. How come you get to have a second birthday when the sun shines? LOL
Sounds like the Dex spread out is better for you, does that mean the moods swings are better too.
I have my grandchildren arriving tomorrow and really looking forward to it, they live so far away and term time rarely coincides with Peters good times.
Hope the summer holds good things for everyone it certainly lifts the spirits seeing the sun.. It also shows all the dirt that accumulated during the winter so its spring cleaning time for me. Just as I was getting used to be a 'lady of leisure!"
love MIn
Hi Dai
If you go to the home page of of this site you will see an article on subcutaneous velcade from the Lancet Oncology, which hopefully will add some arrows to your bow when you see him/her. Good Luck and who knows you may be a groundbreaking Velcade patient.
Regards
Min
I would not be too concerned as long as he is not trying to rive his skin off! sounds like and allergy to one of the medications he will be getting post transplant perhaps an anti biotic. If the health professionals are not concerned they probably recognise it. Following the high dose chemo, the body is very sensitive to all kinds of things that it was not before like soap with a fragrance for instance.
Hope it clears up soon and he gets home to enjoy this uncommonly good weather
Min
