[ali49Participant]

Hi Steve,
I've been lucky re dietary restrictions as I don't have any at present. When I was first diagnosed the dietician put me on a low potassium diet. I queried it with her saying 'most people with cancer are encouraged to maximise their fruit and veg intake, lots of fresh organic stuff etc, and you're telling me to eat 3-4 portions and well cooked!' She went off to check my notes and then said my potassium was not that high anyway so not to worry!
It does creep up and I am careful to avoid high potassium foods in large quantities. Also try to drink 3 litres a day although my renal consultant didn't seem to think this was necessary.
How did you find out that your kidneys were failing? Have they improved since you started the velcade?
Alison

[ali49Participant]

Dear Sue,
yes it's true that district nurses rarely do 'personal care' any more, if necessary you can have carers to help with that (but you may have to pay). If you can speak to the Macmillan nurse on Monday she can advise you on what help and services are available.(If you have to wait for an appointment, get back to your DN and ask her to visit to discuss the questions you have re pain control etc) I agree with Eve's comments about the palliative care team which usually includes a Macmillan nurse and your district nursing team.
The Liverpool Care Pathway (mentioned by Min) is really designed for end of life care in a hospital setting, it allows people to discuss what treatment they do and don't want (and to stop unnecessary proceedures, medications etc).
Don't delay asking for a respite bed in a hospice if that's what you and Michael want as there is often a bit of a wait for a bed.
You need professional support so as Tom said insist on it and grab it with both hands.
Love Alison

[ali49Participant]

Dear Sue,
I am so sorry that you and Michael are suffering so much. I am a community staff nurse (district nurse)and I recommend that you ask your GP to make an urgent referral to your local DN to get them round ASAP.
They will assess all your needs and act as liason between you, the GP, Macmillan nurse etc. They will visit as often as you need and will know what other resources are available to you. Here we have the blessing of a charity funded hospice at home team that we can share care with and there is cover 24 hours a day. There is possibly something similar in your area. You need all the support you can get so that you can make the most of your precious time together.
With love
Alison

[ali49Participant]

Glad to help celebrate good news. I too will have been diagnosed two years ago this January. Life is very precious and celebrations add extra sparkle! I wish you a Happy and Healthy 2013.
Alison

[ali49Participant]

Hi Steve
being diagnosed with Myeloma is a serious and scary thing but I hope I can offer some reassurance. I was diagnosed two years ago aged 48 and my kidneys were failing (creatinine over 1000). I was treated with dexamethasone, Velcade and doxorubicin and was on dialysis for four weeks. I was able to come off dialysis and my kidney function is poor but stable (creatinine average 400.
Like Jo I was advised against SCT but they harvested my stem cells (Sept 2011)and froze them anyway. I was well and back to work full time but when my pp levels started to creep up again I was treated with the standard CTD therapy (cyclophosphomide,dex and thalidomide)for 18 weeks. This was ineffective for me so after they proposed a stem cell transplant as my best option. That was in September,I was looked after very well in Oxford, and my kidneys were not affected at all. Now I am contemplating going back to work in a couple of weeks!:-/
I've been fortunate in feeling well most of the time and able to carry on pretty much as normal. I hope this will be true for you too.
Best Wishes
Alison

[ali49Participant]

Hi Kes
I was diagnosed nearly two years ago and it certainly has its challenges!I did find that being able to stay at work (thanks to a very supportive manager)and trying to do 'normal' things really helped me.

I think everyone copes in different ways according to their personalities and what support they have. If you are assuming that everyone else is 'strong'and 'brave' (and all the other words people assume you are when you tell them you have cancer) then of course no one is all the time.:-/
It also does depend how you feel in yourself. The dex in CTD can give you terrible mood swings and make you depressed plus being tired from the thalidomide. Have you told your Dr how you feel?

Life will get better, just hold on and take each day as it comes. It is hard when you are on the medication and your social life seems to be all hospital appointments but when the medication has worked and you feel better you can plan a holiday!

I hope this rambling message helps a bit,
Alison

[ali49Participant]

Hi Jo,
I've been on epo for over a year and once you get used to giving yourself injections it's not a bother at all. The company that arranges the deliveries is Fresenius Medical Care and they are very organised. I have mine delivered to my place of work and they are packaaged in a cool box to keep them at the right temperature. They also arrange for someone to come and take your blood regularly so that your Hb doesn't get too high. (If it does they contact your Dr to change the dose.)
It's great, if you've been struggling with anaemia, to get some energy back!
Love Alison

[ali49Participant]

Hi Tina,

I'm glad to hear that you're responding well to the CTD. I'm waiting for my blood results taken on Weds. I know we're on the same cycle so I think of you when I'm wide awake at 4am on dex days and anticipating the low days probably Tuesday!! The energy swings are hard to aniticipate aren't they?
Stay well,

love Alison

[ali49Participant]

Hi Tina,
I'm on day 7 of my first CTD cycle. Glad to read Eva's notes on the dex because I've noticed the swing from high to low. I got so much housework done at the weekend, I'd cleaned the kitchen by 8.30am! Now I feel a bit 'on-edge' and fuzzy headed!

It's great that we can all support one another, hope all goes well for you,

Alison

[ali49Participant]

Oh of course, I was casting my mind too far back!!

[ali49Participant]

HI Sue, I'm afraid that I can't put a face to your name, but It's nice to hear from an ex-colleaugue. I'm still at said establishment although it's all offices now. Do you live in the area?

It's a funny small world this, isn't it?:-)

[ali49Participant]

I guess you could take a notebook and write down things you would like to ask and try to find out later.

I don't know what other people think but I believe it may be harder to be the carer than the one who is ill. I have MM and am fortunate to feel better than my blood results suggest but I know my family and friends worry about me a lot.

[ali49Participant]

Hi Charlielouise,
this site is a brilliant place to meet people in similar situations and get support. You must be feeling totally overwhelmed at present but you will find that it gets easier to cope once all the information begins to 'gel' How lovely for your nan that you can look after her, that will be a great help I'm sure.

As for questions, the members of this forum have loads of advice and the specialist nurses on the help line are brilliant. I hope that your Nan gets some prompt treatment and that she does well.

Welcome to this funny life,

Alison

[ali49Participant]

HI Terry,
I had a solid cannula in my left arm so couldn't bend it at all, but an 'ordinary' cannula in the right so that one I could move. A possible side effect of the harvest is low blood calcium which can make you feel 'muzzy headed' and gave me tingling in my arms. They give calcium to treat this but it ruined my ability to concentrate so I didn't read any of the things I had taken to pass the time. The nurses stay close by and chat and provide drinks and snacks and there was TV. I managed to use my phone allright. Good luck, hope you get a good harvest.

Alison

[ali49Participant]

thank you Eve, hope you are doing well too.
The decision has been made to harvest some stem cells anyway and then they will be on ice should a SCT be an option in the future. Looking forward to those G-CSF injections:-/.
Alison

[Author]

Posts