Shirls,
I wish you all the best for the future. I hope by now your back into the routine of home and family after your sojourn in hospital. Dont rush it take you time and enjoy yourself. Keep Well
Min
I will let you in on my secret Bridget giving up smoking was something I kept promising myself when Peter was diagnosed. I watched him stuggle thru his transplant and decided then if he could put up with that I could give up smoking. humph. to help me I enlisted the help of an electronic cigerette. Looked like a real ciggy, produced vapour instead of smoke did not smell and gave me the nicotine hit I craved. Then I put in a new filter full of the 'hard' stuff. with my 1st puff i got the biggest fright of my life. Thought I was having a heart attack, went into panic attack mode and got more afraid, more panicy and before I knew it I had given up smoking as the palpatations would not go away. I knew that it was time to call it a day. never had another since. I really want one every day but I now have a healthy bank balance after giving up and wish I had done it sooner. MMM wonder if they do electronic chocolates? LOL
Min
Hi Amelie.
I dont think you can take chances with this disease and flu, I think John should see a Dr and get some Tamiflu, and or Aciclivor anything else he may recommend. He still has a very immature immune system which will need some help.
I dont have myeloma my husband does, but I did have flu about two months ago for the first time in my old age life! All I wanted to do was sleep and my bones ached as well as my teeth! It was truly awful, Peter had it too and at that time he was in remisssion. He relapsed shortly afterwards even though he was taking anti biotics. Dont take chances take care.
Min
I think I am going mad bridget I remember typing an ansa to you and now cannot find it.. so excuse me if I appear crazy. Excuse me if I have posted it somewhere wrong. I have obviously overdosed on luxury chocolates that have been telling me to eat them for two weeks now! n order that I could no longer be tempted by them. apart from feeling sick, I cannot bend down and really must go on a diet. But as I have never ever dieted as I have always kept my weight down as a smoker, now that I am a non smoker its all change. It took me twenty years to get the will power to give up smoking so dieting nooooo chance. You know what if you cant treat yourself and over indulge at this time of year. Im going to cancel christmas.
Min
Dear Sean You must be gutted by the news about your transplant. I know how upset Peter was with just 5months with no meds
Peter gets the full disability allowance including car. The price 4 crushed vertebra a life on pain killers and kidney problems, and of course myeloma. He had never previously claimed any allowances in 43yrs as a worker.
He works now for 3hrs a day is partly mobile, and required a great deal of help to get the form filled in. The 1st application was dismissed summarily as we did not think to ask for help!
Do you have any mortgage protection insurance that can help? or and a car loan insurance ? Critacal illness insurance was available when we took out our last insurance and we decided against it and took the income protection instead, Only payable for 12 months but very useful when the DSS are being belligerent.
Apply for the blue badge very easy to get with the help of your GP and get help from Macmillan with the disability form. It needs expert help or you will fail.
if I can help I will just ask
Min
HI KIETH AND GILL.
Peter is well into his velcade now and so far the only side effects have been. Hiccups…and DVTs but todays appointment with a brand new registrar (who's English left much to be desired, and clothing looked like it was from a charity shop) hit him with bombshell the bad news that his numbers have gone thru the roof since 14dec climbed up and up Fortunatly she went off to speak to the Proffessor and we read the computer while she was gone.
Such a shame as he was responding so well. Going to join you Bridget probably on Revlamid in about two weeks or so when he gets thru to the end of cycle 4 this Friday
Just amazing that he feels so well otherwise. I have been thinking he looks really rosy and healthy. Just goes to show how useless I am. He has been so warm at nights after months of feeling cold, ( do not read this the wrong way I mean warm to touch and not needing a hot water bottle) was sure he was on the mend… Bugger bugger bugger. I have a migrain now… must be the chocolate! Now its my turn to say onward and upward
Min
Sorry to hear your news, its a bummer. Shame you had to join the relapse group But on the plus side you know the drill, and new treatments are better than old and hopefully longer lasting too.
Min
Hi Gill
Peter is in the middle of his 4th cycle of velcade. Im afraid the dreaded dex is taken throughout the courses.
I read all the information regarding the lowering of doses etc and under the skin instead of iv. Initialy I thought oh that ineresting as it means he can give himself them, as he does with the heparin he has to inject daily because of the velcade. But in reality he has to have the results of bloods done before they make up the Velcade. (which is such a tiny injection) I used to go to the hospital with him for his Chemo but its takes sooooo long to get the stuff from the pharmacy to the day clinic, you would think it was coming from a far distant land!
Just so you know it can take several hours twice a week Peter has attended at 12-30 and occasionally does not get home until 5pm. Whilst I enjoyed meeting others who are in the clinic for chemo work prevented me going twice a week. The dreaded dex does get better when taken with lots of food, but when Dex raises his head in anger I just remind Peter that Dex is speaking to me not him!! and I don't take any notice of Dex when he talks to me. I see it as Peters alto ego. Don't worry you get used to it.
On the plus side it 'velcade' has been incredibly effective to date but he was slow to respond to it.
there is a period of ten days every three weeks when there is no dex so at least you have something to look forward to!
Good Luck
MIn
I recommended them to my brothers neighbour who has a 12yr old border collie and she just sent me a message of thanks to say they have made a big difference to her dog too.
Hi Sarah
I know what you mean. I wanted to give up work when Peter was diagnosed and decided the human contact at work was going to keep me sane. More recently I received a letter from M& S where I worked 20yrs ago to tell me they are gong to pay my pension next month when I reach 60. I decided then that once the mortgage was finished the M and s pension would keep me going until my old age pension was due, hearing I could volunteer for redundancy and get my police pension with no penalties made my mind up. Along with the fact that I have often thought that life is too short, and best; make the best of any time I have the opportunity to spend with Peter. I know he will drive me round the bend but nothing new there. Like you I am having a lot of time off for hospital appointments, I dash around like something demented and just want to slow down and smell the coffee so to speak.
Min
Jenny
The booklets you would like to see can be found and downloaded they are to left of this page near to the top under the Title 'Myeloma Library' Hope this will help you to understand better.
Min
Roz
You are very much in all our thoughts at this time, I am sure we will all be thinking of you tomorrow.
God give you strength to get through this evening, and to deal with tomorrow too. If it snows it will be like a blanket, making the world look clean and fresh. Its not an omen its nature. At its best and worst. Hugs are sent in abundance from us all to you and your family.
Min
Hi Jenny
Your poor dad is going through the mill. Im sorry he is having so many problems but hopefully they will get his kidneys responding to treatment and the fear for your step mum will go when she realises he is responding to there care.
I would say don't let him go home until he is responding well or he will be back again before you know it.
I am amazed that they had put him on a clinical trial when he was so poorly, rather than tried and tested treatment.
I agree that the Macmillan nurses can be a godsend. When our Macmillan nurse knocked on the door I was convinced that Peter was doomed. I was soooo wrong she was amazing at organising his care programme and for getting things done.
Swelling is normal with kidney damage, peter has it and with the correct amount of water tablets it can be controlled, diets have to be changed to exclude as much salt as possible. My husband had fluid up to his chest and in the space surrounding his lungs; it will go once the treatment starts to work and with the correct tablets to reduce it. Make sure he has a full care package before he goes home and he will get back on his feet eventually.
Understand that dealing with this disease is a marathon not a sprint. Nothing happens fast, it all takes time and requires an awful lot of Patience
Best wishes to your dad and hope he remains chirpy
Min
Dai
My oldest dog Ben had got to the point that he could not get up off his bed to go for a walk he was so stiff, he dragged his feet on all our walks and the two younger dogs were not at all pleased that we went everywhere with him bringing up the rear so to speak. I got to believe he was not long for this life. That was about 4-5 moths ago. Then i discovered a product called Flexi-joints from Healthspan in jersey
240 Tablets for about (£9 you cant get a vet consultation for that) I give him 3 a day and he now has no problems getting up and he is striding out ahead of me again. Its a small investment for a lot of joy. I don't work for them or have any interest in the company I just use them because they are cheap and of a quality that is effective. If I could slip them into Peters food I would if I thought they would work on him too!
Gill you will be surprised at how much the puppy will learn from the older dog, and on the good side they excercise each other at that age My two younger ones still chase each other.
Min
Hi Lyndsey,
You describe exactly what my husband suffers from as a result of 4 crushed vertebra. His problems of pain are mostly to do with the ribs sitting on the pelvis or hip bone due to the new short torso. Big tummy and bent back looking like a hump. Smaller appetite… frequent toilet visits as all his organs are crammed into a smaller space. In his case he had two balloon kyphoplasty following on from radio therapy, but I have to say it was a difficult task persuading the consultant haematologist to refer him.
From experience I can say that, they will not do this on a crush that has a tumour load in it. The fact that the vertebra have crushed is an indication that a tumour has caused the damage. Following his 1st operation on two he was almost immediately out of pain. going from 160 mg of morphine a day to paracetamol X2.
Peter should have had two further Kyphoplasty done on 9th of December one of which had just happened recently. but they had to be canceled due to the fact that a tumour needs to have receded following treatment or it can cause problems.
In his case he had not been on treatment long enough. ( He is a relapsed patient having already undergone an SCT. He was also found to have DVT's.jusst before Xmas snap pun) On the 1st occasion we had to get a referral via other sources. For instance you could ask your Mums GP to do the referral. By the time you get an appointment and reach the point where the op can be done the Myeloma treatment she is on may have made a difference to a potential tumour.
We found for instance his consultant had never heard of balloon kyphoplasty. I rang the trauma hospital to find out which Dr was able to perform the operation, and a nurse specialist in osteoporosis booked him in for an osteoporosis check up its called a dexa test. following which, she referred him to a surgeon. The surgeon was only too happy to do the op as the hospital received a grant of £2K from the government for treating a cancer patient quickly!
What I suggest you do is try and contact her gp but do the research so you know who you want the referral to. Speak to an osteoporosis nurse specialist at a local hospital. I found ours on the internet. Look up your hospitals and search there trauma teams for a 'spine man' There are very few surgeons trained to do Kyphoplasty.
He did regain a little of his height, he is a bit straighter, but more importantly the pain relief was a blessing.
He has the pain again now but only because of the new crushes. But his Macmillan nurse helped him to understand that upping his morphine to the point of coma was not the answer. Changing the pain tablets from time to time for a different type is more effective and prevents him having to have ever larger doses. The cramp pain he found was eased by 2mg of diazepam. ( He no longer takes this but was on and off it for 10months)
If I can help with more info let me know. If you click on my name under the photo you are presented with the opportunity to send an e mail directly to me.
I think you are on the ball for your mum and its just a question of timing now.
Regards
Min
