You can forgive him for this dexatude Gill, we have three labradors, and they are what gets Peter out of bed in the mornings and at his worst and lowest point in the past the dogs have always been there to lend an ear.
For both of us. What better way to get out in worst of weathers, and the best of weathers.
I moan like mad when its raining as drying 3 of them is a pain(literally) but the joy they bring is priceless. The oldest is 12 and the youngest is 6 They are our surrogate children. The real ones now have there own families and dogs.
What breed is the new puppy and don't forget to attach a picture when you get him/her
Min
Hi Jonny,
I can empathise with you, as I always felt Peters consultant had no bedside manner from the day he told him what he had and how long he had!
Its now over 16month since we first met and I know now he does his very best for Peter, and gets the results we want to hear. Not always delivered with warmth or feeling, but we have gotten to know him better as time has gone on. A 15minute consultation once every 6 weeks did nothing to make me like him more but Peter respects his judgement and as time has gone on I realise more and more he does know what he is doing!
This may sound rather crass but after several months of seeing a kidney consultant who had a lovely bedside manner but was just about useless medically; I would rather have rude and abrupt as long as they are capable with knowledge of their chosen speciality. It takes along time to build up a relationship of trust, I didn't like him but peter has a lot of confidence in his ability. Is your husband happy with him? Is he making progress, if so I would say better the devil you know.
Like you my husband was a 6ft 141/2stone relatively healthy individual who went down to 5ft 6inches and 10 stone and eventually regained some of his weight though not all of his height. He was not fed by tube but I remember feeling like a mother hen to get him to put weight on.
Regards
Min
The breathlessness may just be part of the anxiety. I tried to give up smoking ( am now a non smoker) and in doing so used an alternative to nicotine which gave me palpitations and made me breathless) The anxiety of being breathless made me more anxious and more breathless. As the fear got worse I gave up smoking without any further help!!!!!!!!! The breathlessness stayed with me for a while until my fears were allayed by an ECG. Anxiety is a strange bedfellow. But I would make sure you mention it to the Dr when you attend for her appointment.
min
Hi Ron
Like you I am married to a MM sufferer. At diagnosis I found it very difficult to to bring Peter out of his withdrawn state. For quite some time he became rather insular and difficult to talk to about his illness. Eventualy he had a long chat with our Macmillan nurse and the myeloma nurse specialist. But it was not until he could see from various tests results that he was making progress that he had not been given a death sentence. The very word Cancer will put any one in a spin and she may be thinking some of the darkest thoughts.
I suggest you contact your nurse specialist to get some medication to deal with the nausea, in turn she will possibly feel less anxious. Peters anxiety was mostly to do with catching colds and germs from well meaning visitors.
She may have been warned that catching infections may lead to her being in hospital for iv treatment. Very worrying for a previously well individual.
Don't wait until her next appointment to deal with things that bother her physically, dealing with mm is difficult enough without additional worry, help is only a phone call away and will always be dealt with promptly.
After Peters first raised temperature he ended up as an inpatient, and was always angry with me when I said I was going to ring the hospital for advise. Rather have him in a ward getting treatment than at home getting worse. Was my motto.
We are all here to help one another and we have all been where you are today, so don't be afraid to ask. There is often someone with the answer, or the advise you need on the rest of your joint journey.
Min
Hi Gill
Peter was having velcade on Christmas Eve which meant, Dex then and on Christmas Day too. so I know exactly where your coming from. We now have a sort of understanding where I say' Peter that is not you talking its Dex"
He usually replies "I did not ask for Dex" but for a short while we can agree that Dex is here uninvited.
Dex normally returns but I just remind him of his uninvited friend (Dex) I think of it a Peters alter ego, as he is normally a quite mild mannered man; Sadly its one of the many side effects we have to bite our tongue with. fortunately it goes away. Just wish the bloody Myeloma would go with it! Good Luck to Stephen with his treatment
Happy New Year
Min
Whatever is ahead of you, may you find strength, calm and love to help you through. And may the New Year bring you hope.
Warm wishes to all
Min
Hi Keith,
I think that you suspect what the problem is but cant wait for the bmb and blood tests to prove it. Peter was similar in that he had lots of pains in lots of places just before his relapse.
I think the thing for you now is not to suffer with the pain but to get some pain relief until you get to your next appointment. No one should suffer pain in silence when there are lots of various pain killers available.
Now that you have finished celebrating the cricket( don't care myself but do like it when we do well at any sport.)
I sincerely hope your PP levels have not risen too much as the longer you can keep of medication (of the chemo kind) the better.
Keep us informed of you progress
MIn
Well done on finishing the novel Dai, and on making it to your 57th Birthday. I know some time ago you were so ill your Welsh consultant didn't see this milestone happening so its a double celebration. Peter had his 58th going on 8yrs earlier this month. That Dex has a lot to answer for but I have to say after 3cycles of Velcade he is starting to look younger, must be all those boys toys he got for birthday and Christmas!
MIn
Hi David
glad to hear your progressing nicely, Peter had really sensitive teeth following his sct, He still cant drink coke from the fridge. Sensodyne do a variety of toothpastes and mouth washes, I don't remember the name of the toothpaste but its top of there range and it worked for Peter along with the mouth wash. The secret of Sensodyne is not to wash it out with water but just spit it out and leave the residue to do the rest. Sorry if I am trying to teach my granny how to suck eggs. But lots of people don't know not to wash it out after use.
Visit the dentist when its safe to do so. Just in case theres a cavity there. Hope its not been too much of a bother
Min
Dear Roz,
So sorry that Michael lost his battle, my thoughts are with you at this sad time.
Min
HEAR HEAR GAYE
AND A MERRY CHRISTMAS TO YOU
MIN
Amelie
I spoke to Peters myloma nurse specialist and she said that Revlamid when given is taken continuously after it has worked its magic as a maintenance it is not give as simply maintenance but is a continuous treatment. A lower dose being given as maintenance after it has been used to fight the return of disease. She went on to say it has a much better response than other medications. It is on tablet form taken for three weeks with one week off.
MIn
Bridget,
I am so sorry I caught your post as I was about to leave the office and meet peter at the hospital for his clinic appointment.
I was worried about what we were going to hear, but your post was in my mind whist there, I was discussing Revlamid with his nurse specialist and she was saying that it was a much better than velcade, it is taken by mouth has fewer side effects and you stay on it after it has done its good work as maintenance, so I pray you will respond well to it. I think she said it was made by Thalidomide.
Hopefully the RT will zap the tumour in its tracks. It will certainly get the pain under control but not immediately, I hope they reviewed your pain control in hospital. You don't say but I presume you are back home now for Christmas. Bad news is always a b**** to deal with. Was it you who did a clinical trial?
We had some good and bad news at clinic today. Peter has now got Thrombosis and will be on heparin or warfarin now always. Some of the clots in his legs had broken off and gone to his lungs….too many of them to count, hence the reason for his breathlessness . He finishes the 3rd cycle of velcade on Friday and his response has been to half the light chains he started with. We are happy with that.
Take Care Bridget
Love MIn
http://www.opera.com/download/get.pl?id=33338&thanks=true&sub=true
I could not open this either in windows and my Apple came up and told me to download Opera and it plays fine on it. don't know if opera works in windows or not as I am not that clever but give it a go. It is a web browser a little bit like Internet Explorer but according to the literature with much more security!!!!
Whatever give it a go I intend to download it on my windows laptop as it looks really cool. PS so does the video David
Min
Dear Bridget
So sorry to hear you have been laid low. (A pox to myeloma)
Im on my way to hear how Peter is responding to Velcade so fingers crossed
I know how difficult it is to get bad news but ………tomorrows a fresh day with new challenges once you have digested the bad news. We are thinking of you and hoping for the best.
Min
