[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, 10 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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