Oh Bridget I do envy you the nice weather, warm here but not wonderful.Kitchen will be just right and hope your able to have some input into it… Eve see the forces benevolent fund for help with getting allowances for slim.
I had decided when I retired/redundant I would have a new kitchen, last weeks fright at the hospital made me decide to put it on hold. Then I decided that it would be a good idea to take my mind off worrying. Today I spent yet another day with another saleperson/kitchen designer. I have spent hours on line doing research on prices etc. Its briliant for distraction. Having made a decision finaly I just have to decide [b]when[/b] now and may make it for when Peter has his transplant. In the meanwhle got a delivery of begonias and climbing fuschias in the post today so tommorow will be potting up and gardening. My favourate while Peter is yet again looking at remote controled tanks to keep him occupied for the comming months he paints them and 'decorates' them as a hobby Life goes on………….
Love Min
Hello Again.
Do I think that Peter got his mm being near to fuel from aeroplanes????
No I do think all the many injections he got to go to the Falklands and anywhere else may not have helped.
But in reality, there are many people on here who have never been on or near a plane or ship so how did they get it?
In Peters case I think his cards were marked by his mother, to a certain extent as she had it too. But then again non of his brothers or sisters have it!
There is little point in looking to blame anyone or thing.
Statistics show that one in four people will get a cancer of some kind.
Of those, many will get little opportunity to fight it, or respond to treatment. MM is a flippin awful cancer, indiscriminate and unforgiving. But I watched my young niece die with only a weeks notice of another kind of cancer and dreadful as it sounds this one gives you time….
I am sorry if this is upsetting to some readers but even with a late diagnosis there is often times time for some kind of treatment regime to work.
The horror of Peters diagnosis in Aug 2009 had me in my wild imagination in the depth of dispair. Whilst the roller coaster ride since then is not pleasant. I have learnt a lot about myself, and the fighting spirit of my husband.
As for statistics. My son has a neighbour who's father has mm so 2 seperate people in the same street with a parent diagnosed with MM.
Love MMMMMMMin
Hi Eve
Peter had just finished his 6 months of injections for blood clots caused by the medication.. It took about 6 weeks before they diagnosed that then.
Realistically we have to understand that medicine is not an exact science and they do often get it wrong. But why do they get it wrong when you can tell them what it is… if I take one of my dogs to the vet. She has to work out what it is from what I say and what she observes. Because the dog cant tell her how it feels!!!
If I get ill I want to be dealt with by a vet LOL
Seriously though get a supply of high calorie powders from your Dr or nurse Peter has one called PRO CAL.. I am giving it to him at least 2 time a day hidden in Porridge or soup or custard. It is tasteless. But from experience I KNOW it works. He has a hard time ahead of him and he needs to have some weight on to be strong enough to bear up to what comes next for him with double high doses of chemo. We plan to get him built up as I know he will lose some weight.
We have been here before and he lost 4 and a half stone when he was 1st diagnosed and whilst he did not get it all back he was in '''fighting condition''' when he had his transplant.
He has Bence jones too and had the clots on his lungs plus he has kidney damage and 4 crushed vertebra and a heart condition… He is 58yrs old and no longer fit but he does lift some weights from time to time and walks as much as he can, even if its just up and down stairs.
Slim will get better and the breathless ness will go eventually as the injections melt the clots. Feed him up . let him have all the bad things he should not have. Chocolate cakes ice cream etc. Just don't forget the meat and two veg too.
Speak to a dietician if you can and let them tell you how to build him up in readiness. You will be surprise at how quickly he can regain some of his weight. Little and often is the key.
Love Min
Thank You everyone for your support, Its good to know we are not alone on the roller coaster.
The delightfull dex kicked in today and delivered a feeling of a well being and big appetite(much needed due to recent weight loss of one and a half stone) and the nasties.. Had a little moment of shouting and loss of temper…………him not me..something havent seen since way way back.
I have a question that I hope someone can answer.
Weight and height were done on Friday, and I remeber this being done prior to melphalan before. They work out the dose based on square footage or something.. anyway there is obviously a formula to it based on height and weight. If his vertibra were not crushed and were still intact would he have been given a dose based on the taller and original height?????
Now here is the thing that has always bothered me since his 1st sct.
Peter is four inches shorter than he used to be but the flesh is still lying like a belt round his waist.
So if the dose is based on his now height rather than his [i]WAS[/i] height could it be that the dose was less than it should have been.
I am grasping at straws to understand why the 1st transplant failed. My worry now is will this one fail too if the melphalan dose is too little.
How many people who are shorter than they used to be due to crushed vertibrae have had a poor result from a transplant. Is it a common theme? I am curious and will make sure he brings it up when we go for the drip but before then I would like to know if Im thinking a load of bol***s.
Do you have crushed vertibra and has your sct transplant result been dissapointing?
Hi Angelina,
When Peter was first put on Tramadol and codeine we went to stay at my daughters and he woke up in the morning telling us he had been talking to a variety of dead people relatives and friends who had all been giving him advise on how to beat his kidney failure etc.
We thought he had gone doolally! He cried like a baby because it was so real and so upset because no one believed him It doesn't happen anymore as he knows how much painkiller to take for his back pain now.
More recently I had dreadful sciatica,while waiting for an appointment with the Dr in the absence of any pain killer that worked I took one of his tramadol. The next morning I was doolaly too. Never again.
Reading the leaflet supplied with the drug it says quote RARE side effect extreme sense of euphoria false sense of uneasiness, confusion , hallucinations altered mental state delirium changes to=in ability to think or sense clearly , and the rest
So the answer is read the labels on his drugs, it will probaly account for many of the things you mention as it is only 1 in 1000 who suffer these side effects. Talk to the Dr and see if the drugs are too strong and causing it.
It explains a lot and I was pleased to get home then and read the labels on his drugs and explain to my daughter her Dad was not suffering from cancer of the brain…….which is what we were concerned about at that time as it was so out of character. He was not diagnosed with mm then he was diagnosed with kidney failure so he was on prednisalone and frusimide . So cancer drugs not to blame.
Hope this helps you both.
Min
Its Brilliant Dai, and and and you have a Minnie, the only other minnie I know is married to mickey mouse!
Cant wait for it to be published as you have me hooked. Good Luck and can I have an invite to the booker prize please?
Min
Hi Alistair
I can recommend the Freeman in Newcastle as it has a new purpose built cancer department and two wards and a day ward not to mention lots of absolutely wonderful and understanding staff. A hospital is only as good as the staff who run in and the commitment of the team in Haematology is amazing. We have met some lovely patients too who have had great results.
Warning….. surfing the net and American ones in particular is not helpful. They pay for what they get and can dictate how they are going to be treated and where. Similarly many many american people have no insurance and cannot afford the treatment they need.
Not quite the same here as, if for instance Velcade was the chosen option, traveling to a clinic twice a week some distance is,……. when not feeling too good is not the best option.
Drugs Trialed in America often haven't been approved here in the UK so it is a whole different ball game. The myeloma XI trial here is the current situation, otherwise 1st line treatment is CDT which allows the options of all the other layers of drugs to follow on to if needed.
Watch the videos on this site from Professor Jackson and make your mind up when you have all the facts.
Good luck in your search.
Min
Hi Roberta,
I fully agree with Jet, let them go and get on with your life.. If your husband questions it, tell him that this is the new you, having beaten the odds with your MM your not going to attempt to beat the odds with his family….
We did this about thirty years ago when my husbands parents neverreally acknowledged my children as there grandchildren, no birthday cards presents or otherwise. We simply learned to ignore there existence too after a while. Its hard but its easier than beating yourself up. If his family were friends that had behaved in this way, you would have not thought twice about dropping them.
You and your husband are what is important not them. Don't waste energy or even a thought on them. Its too negative for your future health.
Min
Hi Bridget,
Is this the first time you have had the benefit of a Macmillan Nurse? I cant praise them enough as Peter had one what seams like an age ago but its actualy 18months. She was brilliant and not just there for the patient, she looks after the family too, understanding how they are affected by cancer diagnosis. We have not seen her for over a year but know how to get in touch if needed.
Let us know how the new pain relief is going as like to keep up on these things for future reference for Peter. Hope they make life more comfortable and bearable too for you.
Love MIn
Hi Dai
I have a very vague recollection of Peter feeling absolutely washed out and worse on his week off when he was on velcade…….he feels similar now with Revlamid! whats that all about then. He did have several 'days off' the medication as really beats the heck out of you. Hope they get to the bottom of it as its seen off your immediate enemy so to speak, with the response you told us about last week.
Good Luck
Min
Hi Liz,
Thats what we are here for and glad he is now comfortable and of course so are you now that your mind is at rest
luv Min
I have to own up, I am not that clever; and only resposible for posting a thought that was sent to me.
Im afraid my only contribution to the words was posting it………. I am currently trying to find joy and build memories, This verse made me wake up to some strong thoughts
Min
I am so very pleased that life is back to 'normal' for you both.. Good news is always a boost for those in utter turmoil. Long may it continue for both of you. Nicki,
Love Min
Hi Liz,
I concur with Jet and the professionals are always the place to go for pain.
As an afterthought. If hubby has had further injections of GCSF after his SCT.I know Peter had several to get some 'numbers' raised and had forgotten the pain that the injections bring about; could it be the same pain that he got when he had the GCSF for his harvest?
Min
Hi again Ali,
You just concentrate on yourselves for the moment and when your not quite so stressed Im sure you will be able to contribute in the same way all of us were when we were in your position.
When they get to the cause of the problems with Guys movements and mobility they will do whatever is needed to make him as comfortable and mobile as its possible.
My husband has had/got 4 crushed vertebra and I remember him sleeping in a chair for 3-4months because he could not climb the stairs never mind get in and out of bed. He is more mobile now although not as fit as he would like to be.
They did this within a shorter time than I thought possible after starting treatment ;so be calm and patient and you will get your lives back to …..not quite normal…….but certainly acceptable. Take each day at a time and watch the improvement come. It wlll be slow and and it will seem interminable but it will get better.
The dark days will pass as progress is made and your new and different way of life begins. I know its easy to say but don't dwell too much on the negative things. Let him see you are positive for him and it will get better. I think from experience he needs to know your not hurting ( we know you are…. but put on a brave face for now)
Take a big hug from us(((((((((((((((:-) )))))))))))))))))
MIn
