Dear Dai,
You have a gift ……………………knowing exactly what to say……………………………………. and exactly when to say it and I for one am very grateful that you have said what I would have liked to say but didn't know how.
MIn:-)
Absolutly flipping brilliant news.
Brightened my day after reading the distressing news from some of our friends. Just what was needed Dai
love Min.
PS lambton worm pronounced warm in Geordie land
Brilliant News Bridget.
What a relief. I am so pleased for you.
Those worries in the middle of a dark night always frighten you half to death.
Sunshine in the morning is a great leveller. Perhaps when you get some new pain killers you can carry on where you left off with the spring cleaning.LOL Just don't do more than your body tells you.
Love MIn
A very warm welcome to you Sally and of course Guy. Please feel comfortable in our unique little 'club'
Its very comforting to chat -even if it is on line to someone who understands how you feel.
Especial in the small hours, but mornings make things look soooo much better.
I hope Guy does not have to spend too long in hospital, and when he gets home he gets to grips with whatever treatment option he is on. It is all very confusing to start with…….so many tablets to take at different times. But rest assured there will be someone on here who is on the same regime, and has the same side effects and down days. In case no one has warned you. Be prepared for the days with 'DEX' when you husband will change character without warning and eat you out of house and home and surf the net because he cant sleep. (Why cant they do the ironing?) LOL
Min
Great News David,
NOW get on with you life and enjoy it. I know how every little symptom worries the he**l out of us. But just living a normal life while you have the opportunity has to be the answer.
I have a pain in the neck too…. Its called Peter!
Vasbyte
MIn
Hi Debs.
Dont despair, it was explained to me that when you start on a drug and it works well its because the 'load' is greater for it to deal with. When the 'load' is smaller there is less of a need to Punch it so to speak, so the results slow down. If the result is little and often that is what matters. Think positive thoughts. The beast is listening in!
Kind Regards
Min
Dear Susan,
Kevin was an inspiration to us all and he spoke often of his fight with the type of transplant he was able to have. I read his story in the Myeloma Matters booklet and he was incredibly brave to have fought so hard for so long. I know you will have many happy memories of your lives together which will bring you the strength to cope with the coming months
Love Min
Hi Eve.
Im so pleased to hear that Slim is finally making progress…:-) You will have him home soon, and be able to get on with your life again.
I was in your place, some time ago and had not found this site at that time but I know I would have given my eye teeth to be able to hear something positive from others who had been thru the experience.
I think my greatest fear was when Peter lost all his weight, I didn't think he would ever have the strength be able to gain some of it back. I didn't reckon on his ability to fight this evil monster in him either.
We are all here because we need support of one another in many ways. Sometimes its just contact with another person who understands.
Stay positive
😉 Love Min
Dear Tina,
I am so sorry to hear the dreadful news of Patricks passing. I know things will be very raw for you at this time and hope that the many happy memories you have of him both before and during this barsteward illness will comfort you at this awful time. My sympathies to you and your family.
You are in my thoughts
Love MIn
Hi Eve
How is Slim today? any good news to tell us. Forgot to tell you my man had lost 4and a half stone and shrunk by 4 inches since the beginning of this god dam n awful journey.
I lost a stone in weight and lost my mind with worry. I have put it back on but the minds lost in the wilderness if I could only remember why I climb the stairs without having to go down again to remember I would be fine.
I am exhausted from having to constantly having to go back to square one to remember what to do next.
In keeping with Toms advise I use the term Bar-steward to describe this blasted illness we know what I mean.
Keep your chin up and thinking of you
Love MIn
Hi Marian,
There is just so much to take in at these consultations and it does not help if the Dr doesn't make an effort to ensure you understand them. But don't worry there is lots of information on this site. Download the info guides and read what you can. Not much of it will make sense to you at this stage but as time goes on and he gets into treatment it will all fall into place. Again don't worry about the delay until the next appointment. If your dad was in a 'bad' way they would act immediately and start treatment.
This is a very individual disease and for that reason they need to collect all the data they can and usually they have a meeting of minds so to speak to decide the way forward given all the evidence.
In the short term ring the hospital, most have a myeloma specialist nurse who will put you at your ease and bring you up to date on your Dad treatment and diagnosis.
Most important that you stick to this site for your 'surfing and research' as you can terrify yourself reading some of the american sites most of which are not up to date.
With some types of MM, bloods have to go to different hospitals which are hundreds of miles away and they have a backlog of work hence the reason for a 3week appointment My husband goes to hospital in Newcastle and at the outset his bloods went to Birmingham for instance. They have a machine here now but its main use is on a Monday.
If your Dad is feeling fine and not suffering in any way and getting on with day to day life that is the important thing.
Min
I am with you Dai, I often wish Peter had not been put thru the SCT part, as he was doing so well on the CDT.
To be made so ill, by the SCT with no guarantees of how long it will work if at all. (Particularly in my husbands case when he only got 5 months) I frequently wonder if he would have had a better outcome on a very low dose of of CDT instead of going for it before he had reached zero.
Its history now, and I wish you luck with the velcade and hope you respond well
Min
Dear Eve
Your slim problems sound so familiar I could be reading Peters record. He always looks well too when he is 'more ill'
I know your worried about blood clots on lungs but Peter got them when on velcade he had so many of them they could not count them. He was puffing like an old man running a marathon. So breathless that I was more terrified than when he had a heart bypass 8yrs ago. But today he is fine (ish) given the fact he has MM.
They did a D Diamer test which showed how bad the clots were then lots of other tests. He gives himself a heparin injection daily to ensure the clots don't re-appear or shorten his life.
Velcade caused peters Pulminary embolisms. or as they call it today Thrombosis. He had had a few chest infections and lots of water retention including in the linings of his lungs when he was 1st diagnosed as well as kidney failure. The consultant said he was surprised he did not get it when on Thalidomide as that is a high clot risk factor. Peter was on a daily dose of aspirin to prevent such things but still got it.
I blamed all the 'gas' training he used to do with recruits in the RAF for this but in truth it was a side effect of mm medication!
Thrombosis when on the MM medications is a risk (slight) but its manageable with tablets or injections. Warfarin is another thing they take when the clots have gone.
Jeepers I remember when they were discovered and thought he was going to slip off the plate and die there and then, in truth so did Peter, with the shock of having yet another serious illness;but its very manageable,with medication, just as the mm is manageable.
All of these setbacks are a steep learning curve for Slim to listen to his body, and he will recover from the clots.
Having spent days in the Hospital from Hel* he will learn to take care of himself and ensure he does not have to go back in!!!!!!
When Peter was admitted at short notice and unexpectedly he made it a goal to ensure he never had to go back even though he had excellent care he just hated it being away from home.
He is a regimented type of person and everything has to be done in an orderly kind of way and hospital does not allow for this…hence the reason I think he makes sure not to have to go back in.
As with all people with this disease when you have been passed as A1 fit in the forces being felled by a cancer of this type is incomprehensible, as an ex marine slim will find it difficult to believe that having been fit all his life he could ever contract such a thing. Or at least that was what my husband said of himself. This is a man who only ever had 5 days sick in 27years and that was caused by kidney stones.
When the Dr told him he had cancerous lessions he told her she was very wrong and he would know if he had cancer… How wrong he was.
Hopefully the worry about TB is only that, and I pray that he does not have another health problem. Get him home and give him some TLC ASAP.
Then you can cuss as much as you like!
Love Min
HiBridget
I know nothing about cystic fibrosis except a friend who has a very good friend who has had a transplant, he took her to London for a short break and it was the 1st time she had been that far away from her hospital. He said he was terrified for her. So I cant imagine how your life has been. But sounds as if your daughter lives life to the full and good on her.
Luv Min
Hi Eve,
Cant imagine who you have offended, but don't worry I it was not me!
I hope things are improving for slim and you too of course. How is he and how are you coping. Its a long day at hospitals and very tiring for both patient and loved ones. I think you must be done in by now and praying slim gets home soon so you can have a 'rest' Keep in touch
love Min
