[gcoulterParticipant]

Agree with everything posted by Mash. My wife had a STC and around day 11 it was really hard to see her curled up in bed and not eating. But the doctors and nurses kept reassuring us and she soon bounced back as they said she would. Two years later she hasn’t looked back.

[gcoulterParticipant]

Hi

My wife is 18 months past her stem cell treatment and we’re really glad she went through it.
She was 51 at the time, and like you responded well to the initial treatment.
We were encouraged by this as we were told the stem cell tends to be more effective in those people who respond well to the initial treatment.
Like you she was hesitant wondering if it would be worth it, after all she had read and been told.
In then end she was really glad she did. She found it easier than the initial treatment, as she found it very heard at times, dealing with the neurophy and the effect of the steriods etc.
Her PP levels haven’t moved, and fingers crossed they stay that way for a while longer.

Hope this helps and best wishes

Graham

[gcoulterParticipant]

Hi

You are clearly going to be there for her, which is the the number 1 thing you can do. In terms of what else then from my experience there are a couple of things you can think of.

My wife was diagnosed 3 years ago aged 48. Like your mum she was, and still is, reluctant to read a lot about Myeloma. I did this for her, and was able to pass it on as and when she wanted to know something, it also helped me re-assure her at times.

I also went along to all her appointments with the consultant, as it is hard for 1 person to take in everything they are saying.

Continue to use the forum, there are loads of really helpful people on here.

Finally, remember to look after yourself and make time for you. This will help you to help your mum.

Graham

[gcoulterParticipant]

Hi

My wife had her stem cell transplant in September after 6 rounds of VTD. Like you she was dreading it.

Whilst it is different for everyone, and my wife did have a tough few days, we would say it wasn’t as bad as she had thought. Perhaps this was the effect all this information had, when you are built up to expect the worst, then it usually never ends up as bad as you thought.

Edel was in hospital a few years ago with pneumonia, which is how they discovered her myeloma, and she found this tougher to recover from. She also found some of the VTD cycles tougher than the transplant, the neuropathy, the effect of the steroids etc.

Even afterwards we were sceptical when the consultant said she would bounce back quickly enough. Her recovery has been great, we enjoyed christmas and treated ourselves to a week of winter sunshine in Tenerife earlier this month. She was even able to go to a friends wedding in December, something we had ruled out pre transplant. One of the little things my wife “enjoyed” in November, was not having a hospital appointment for 4 weeks!

Don’t fear, if you’ve managed to get this far, you will get through your transplant fine. Think of it as the beginning of the end.

I’ll finish off with a quote I gave Edel at xmas from her favourite film, the Wizard of OZ,

“You had the power all along my dear”

 

Graham

[gcoulterParticipant]

Hi Richard

My wife was diagnosed at the same age, then spent 2 years being monitored every 6 weeks or so. She then went on to treatment this time last year, VTD, followed by a stem cell transplant in September. She is now in remission.

I remember when we were first told, it is a very confusing time, trying to absorb and understand everything. Forget about protein levels, bloods, etc, it’s the bit between your ears is the hardest bit to cope with. We decided not to tell others (apart from our sons) initially mainly because we found it hard to mention the word myeloma or cancer to ourselves let alone anyone else. However after a while we adjusted to this and are now much more comfortable talking about it.

It is a huge adjustment, but with the support of others you will be able to get through it. As you will read on here, this is a marathon, and there is no right or wrong reaction to it, or whether you should share it with others, it’s an individual choice with whatever you are most comfortable with. Edel choose “on a need to know basis”, as she didn’t want to be overwhelmed, whereas I did more research initially and passed on information at a time when she felt comfortable to know a bit more.
Our tip would be to give yourself time.
Good luck and take care.

[gcoulterParticipant]

Yes very small world indeed, and yes she had it in 10N. She has recovered really well and has been out and about for around a month now. We were at a wedding a couple of weeks ago, which back in the summer we didn’t think would have been possible.

[gcoulterParticipant]

It’s my wife (Edel) who has Myeloma, and she had her SCT in September this year after 6 cycles of VTD. Our consultant is Dr Boyd, in Mandeville, Craigavon. Stevie if you live in the Banbridge area then I may know you, as we used to be neighbours! Either that or your name is more common than you think.

Graham

[gcoulterParticipant]

Hi Stevie, welcome to the forum, I agree the NHS are super here in NI.

 

Graham

[gcoulterParticipant]

Jane

My wife has been monitored for almost two years now and they’ve been keeping a particular eye on her renal function. Although her protein level is high they didn’t want to start treatment until it was affecting something.

She was advised to drink 21/2 to 3 litres of water a day. She initially found this hard and this reflected in her blood test results. However she then got into a routine and her first test after this showed how effective this was. As she walked in the door the consultant said, “I see you’ve been drinking more water”. She’s kept this up since.

Initially she found it difficult to remember how much she had taken on any particular day, is this glass number 4/5/6? So she started filling a large jug each morning, and poured glasses from this, so she knew how much she had taken or still had to take.

We now know why the doctors and nurses emphasised this so much!

I hope your appointment went well.

• This reply was modified 8 years, 2 months ago by  gcoulter.

[gcoulterParticipant]

Hi

I’m sure the consultant has told you to drink plenty of water, this seems to have really helped my wife. It’s hard to get used to drinking 2/3 litres a day, and initially my wife could never remember how much she had drunk by the end of the day. So she started filling a jug every morning and pouring from it during the day, this made it much easier to keep track. There is a clear side effect of drinking plenty of water, trips out have to be planned around loo stops! We also bought a supply of had gels and have them in the car and in various handbags etc.

In terms of diet then Edel hasn’t really changed that much since she was diagnosed (almost two years ago). In terms of exercise, she would walk regularly, which is enough, it also keeps the mind healthy!

In relation to your lifestyle change, this is really a personal choice based on your own circumstances, the only thing I would say is not to rush into anything, wait until your head is a bit clearer, there is just so much to take in at the start.

In terms of skiing I can see where the nurse is coming from, as there is a clear danger of falling and bone damage (well for me anyway!). Remember you will be meeting your doctor every couple of months for check ups and will be able to ask questions as things arise. We’ve booked several holidays since Edel was diagnosed but only after an appointment when she was given the all clear again, and ensuring the doctor was ok with it (never been an issue).

The forum and staff at Myeloma are also really helpful.

Finally I would really recommend to go along to a Myeloma info day. Edel was reluctant to do this last year, as she was concerned she would be overwhelmed by it all. However she found it really useful to talk to other patients and the Myeloma staff.

Take care

[gcoulterParticipant]

Hi Mark

My wife was diagnosed almost two years ago (aged 48) and we felt exactly the same as you do now, scared confused worried.

Edel was diagnosed after having pneumonia for the 2nd time in two years, she had x-rays, a PET etc and after a bit of deliberation they put her on a watch and wait. Although her protein levels were almost 40, as it was not doing any other damage, they decided not to intervene at he time. Since then she’s had an appointment every 6/8 weeks. In fact at our appointment before xmas the consultant remarked, normally medicine is all about treatment, but this is the only time I can say, look at the effect of doing nothing! She was as healthy as she had ever been.

As someone else had said the first six months is tough, mentally. Forget about protein levels, bloods, etc, it’s the bit between your ears is the hardest bit to cope with. We decided not to tell others (apart from our sons) initially mainly because we found it hard to mention the word myeloma or cancer to ourselves let alone anyone else. However after a while we adjusted to this and are now much more comfortable talking about it.

It is a huge adjustment, but with the support of others you will be able to get through it. Rebecca’s advice is good, this is a marathon, and there is no right or wrong reaction to it, or whether you should share it with others, it’s an individual choice with whatever you are most comfortable with. Edel choose “on a need to know basis”, as she didn’t want to be overwhelmed, whereas I did more research initially and passed on information at a time when she felt comfortable to know a bit more.

In the last two years we’ve generally went about life as normal and squeezed in as much holidays as we could manage/afford! Our tips would be to give yourself time, you will adjust, drink plenty of water, and always have some hand gel with you. We were in Portugal in November and were saying to ourselves we really didn’t imagine that over a year later we would be on holiday soaking in the sun!

Good luck and take care.

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