Hi Graeme,
My wife is now 5 years full remission so it is not quite the same but we took advantage of the Nationwide free insurance offer. It doesn’t cover the Myeloma but it is possible to purchase the top up cover which cost us about £100 for a full year of European travel. There is a delay from opening the account to eligibility but it’s only about 6 months. This may not be much use to you now but it may be worth considering for the future. The real benefit is that it covers for a full year.
Ron.
Hi Alan,
There seems to be little in common with your experience and ours. Pauline had only one biopsy – without anesthetic and 5 doses of CDT broken for a month after a severe toxic reaction to the antibiotic which sent her blood pressure down to 55 over 30, turned her bright purple all over and put her in isolation for a fortnight during which she had 2 vertebra collapse. Her SCT was delayed by 2 months as she couldn’t produce enough stem cells. Her SCT stay was in the old QE in Birmingam in a room with no TV No toilet (at the end of a very long corridor) and little else other than a definite 1930s feel, not forgetting the split stem cell bags. The nurses kept sending the food back because it was cold/uneatable but Pauline wasn’t eating anyway. After 5 weeks she came home only to go back after 3 days with severe dehydration and spent a fortnight in a room with only dying patients in. But in all of that the staff were outstanding and after 6 months post SCT she got a full pardon and has been well enough to forget everything other than for a few weeks before her 6 monthly checks.
We always attend the Info Days and have met several who have gone way beyond what we have and on the last one we sat next to a sprightly lady who was over 25 years remission.
Think lucky and stay lucky,
Ron.
Thanks Andy and Helen,
We’re on day 3 of medication and the pain has subsided considerably and Pauline just complains of feeling “Rubbish” and loss of appetite/nausea. The rash has now all joined up and beginning to weep, covering most of he left chest, shoulder, upper arm and neck but causing no discomfort.
The 111 call was handled efficiently apart from the fact that the Doctor somehow got the wrong number which seems to happen a lot with our particular combination of digits so he had trouble getting through. He finally arrived at 1:30 am Monday, 6 hours after the call bringing the antiviral with him and pretty well accepted our own diagnosis. He had been well briefed and was adamant that the call was absolutely necessary. I checked with the surgery the next day to query the prescription etc. and a GP called back and was very helpful and reassuring. All in all most of the delay was down to our confusing the early symptoms with an existing probable cause of the pain. She is on 800 mg Aciclovir @ 4 hours and 10mg Amitriptyline 1 or 2 at night. The GP said that they usually start at 25mg but given the reduction of pain and the Nausea I might just try one tonight.
Thanks again for the helpful comments and reassurance,
Ron.
Hi Alan,
Your post takes me back about 5 years. Pauline, my wife had problems with producing enough stem cells and had to have 4 goes to get barely enough but I believe things have improved since then. The next bit, in March, is the biggie and, as you’ve probably read, everyone’s experience is different. Pauline’s started with the discovery that her bags of stem cells were split and leaking and went downhill from there but that is about as bad as it gets. The good bit is that everyone else involved is putting everything into giving you the best care. Pauline was nearly 3 months before being able to keep even a glass of water down but that was exceptional and 3 months after that she was all clear and has been in full remission for 5 years. We have spoken to others who have gone through the process with hardly any problems and one lady actually went home for 4 days immediately after the STC to wait for the after effects to bite.
Whatever happens, some one else has been there so keep posting.
Forward is the only way to go.
Ron.
Thanks Jean,
We’ve never had occasion to call the helpline and, until today we’ve been very fortunate to have nearly 5 years of relative normality as all of our major problems occurred in the first 12 months. In that time the response and support from all of the N.H.S. personnel at the old Q.E in Birmingham and those at Worcester were brilliant. Thankfully, the cold compresses we’ve been using seem to have dulled the pain somewhat so that’s yet another bit of learning. I just hope that they continue to be effective.
Ron.
Hi Jean,
Thanks for the reply and good wishes. I can understand why there is a reluctance to give the vaccine but when there is an almost certainty that it will develop anyway I should have thought that there was some room for a reasoned response. I suppose that with the present pressure to run away from making risky decisions there is a reluctance to use ones initiative. The problem with this sort of thing is that with Myeloma and all of the associated problems we have had several close calls and when something happens which causes rapid deterioration I think a bit of panic is no a bad thing. A few minutes ago she was folded up with a resurgence of pain and Pauline does not easily react like that so I reluctantly called 111 as opposed to just waiting for the surgery to open really to ask advice so we are now waiting for a call back. In the meantime we’ve resorted to ice packs and that seems to help.
Thanks again,
Ron.
Thanks Stanley,
It does seem that Shingles is one of the free extras that come with Myeloma. It would be nice to pick and choose or maybe negotiate a discount as an alternative but for the moment we are more than happy with the 5 years post SCT remission. Pauline is approaching 71 now and her GP is brilliant so I think we should wait the few hours until morning rather than face the uncertainties of A & E.
Ron.
Thanks Annette,
We have some experience with shingles from relatives etc. and self diagnosed this a few hours ago. Unfortunately, she has calcification in he shoulder joints and we assumed that the pain was from that but when the rash started to spread up her neck and the violent headache started we worked it out. The problem is to decide between the wait and risks of A & E or getting to the GP at 8:00 tomorrow. Why do these things always happen at weekends? 🙂
Fortunately we have a good supply of 30 mg Co-codamols because of 2 crushed vertebrae.
Thanks again,
Ron.
Hi Laura,
I haven’t been here for some time as my wife has been in remission for 5 years and we have been otherwise distracted with other problems. I am now trying to find any topics specifically discussing Shingles and it seems that the search system specifically targets posts rather than topics. This makes it necessary to scan laboriously through umpteen pages of unrelated topics at only 15 per page.
Is it not possible to target the search to topic texts and also, by reducing the space allocated to individual topics to one line of title, date and originator which could make the search much quicker.
Regards,
Ron.
Thanks Stuart, I don't really have a problem but you have explained what the spelling warning is. At least it is not too troublesome, unlike some of the 'helpful' accessories we get lumbered with a lot of modern software. Ron.
Hi Keith,
This explains why I had problems the other night. Fortunately, I used the windows copy and paste to save it and try again. David, I think there is a spell checker on here as I get the occasional warning. It just doesn't make any suggestions. If I can't guess what it's looking for I just reword things to avoid the problem word. That's when I run out of time. 🙂 Ron.
Hi Keith, I very much share your fears for the future of the NHS as the track record for politicians messing about with this, schools and other similar institutions is not good. I also agree with all of your other points. Unfortunately, politicians are a necessary integral part of democracy and must never be left unattended. 🙂 That is something we don't want to change. Your comments about 'Big Business' in many ways apply equally to politicians and, in many cases, to the upper management of many parts of the public sector management. We should not forget that the press and TV news have a pretty poor record for accurately reporting and annalising what is actually happening so, unless you are directly involved, it is very difficult to get a true picture of anything. The only facts that I am reasonably sure of are that the NHS is the biggest single organisation of it's type in the world, the government has promised to maintain funding, and that we are constantly told that we are not doing too well in the international league tables. I am not sure how we perform in total per person expenditure on health but believe that those that are out performing our system are doing things differently and using a higher proportion of private enterprise so change of some sort is necessary and desirable. I understand that the proposed changes are based on successful operations elsewhere so all I can do is hope that they have got it right and hope for fair and accurate reporting of developments. Sadly, history does not give us much hope in either area but it's all we have, plus of course the right to raise merry **** if it all goes wrong.
Hi Keith and all,
This is certainly a hot topic and I think regional differences are going to be amplified when the cuts and changes start. Our local GP practice is superb and very well run and I have no real concerns about their ability to cope with the changes but, from reading the experiences of others, I can understand their fears. Pauline had her SCT in the old pre-NHS QE hospital in Selley Oak and certainly suffered from a lack of facilities but this was more of a comfort factor than a problem with her treatment although the dedication of the staff was a major factor. Seeing this in action, I believe that the most important overall factor is the quality and morale of the staff rather than the beauty of the hospital, although that can affect morale. Over recent years I have visited a lot of hospitals, old and new (Not as a patient) and always find it difficult to accept that the architects seem to think that arboretums and huge open spaces are as important as everything else. I may be a cynic but I wonder if it is because it looks good on their CV and possibly those of a few others. What is certain is that 13 years ago we had an NHS we could afford but we cannot afford the one we have now, any more than we can afford a lot of other services that the last government introduced. As far as governments go, we get the one we elect and unless things get an awful lot worse I shall not be changing my vote as Labour have left, as they have on every previous occasion in living memory, huge debts and problems for their successors. Not that the others have anything like a perfect record. I like the idea of the big society, perhaps based on the way that the folks on this site support each other rather than expecting someone else to do everything, but that is something which will take a long time to evolve and needs nurturing rather than condemning. On the subject of hospitals being closed, Our local hospital is Kidderminster, threatened with closure about 15 years ago. We voted in a local doctor as MP and he did a terrific job, with a lot of support, and the hospital continues to thrive which just shows what can be done. Unfortunately, this was probably achieved at the cost of other facilities at the newer large facility at Worcester but that will always be the case at this and every other level. I am happy that I do not have to take responsibility for any such decisions and hope that those that do have the wisdom to recognise errors and act accordingly. Sadly, I think we have to accept that drastic action is necessary for the moment and hope that it won't be for too long.
Hi Bridget, As they say in the Readers Digest "Laughter is the best medicine." It works for me but how are you at the moment?
Ron.
And all this because I offered to forward a naughty email!!!!! 😀
Seriously, good news is always good news:-S It just seems that when everything is going well we forget to say so, maybe because we feel a bit guilty about those who are less fortunate. Is there anyone else out there with good news? Perhaps it would be better to start a new topic and hope it runs for a long time. Ron.
