[CarolBradley1Participant]

Hi Julie
Glad to hear you are stable.
I am curious to know if you feel spending a lot of time in a sunny climate helps with some of the effects of MM? We lived in Spain until three years ago when we had to return to England as we had an elderly mother who was beginning to need care. However, we are now in a position whereby we could spend some time back in Spain but we are trying to weigh up the pros and cons. I am still quite delicate having had my transplant in February and am still receiving chemo – obviously we will be talking to our medical team but it would be interesting to know if you feel any better when you are in Spain.

It´s rather strange because I only got so bad that I needed treatment when we had been living back here a while – I always put it down to the stress we were under at that time – suppose the pace of life here didn´t help much either (or lack of sun!).

Anyway, best wishes for continued good health

Best Wishes Carol xx

[CarolBradley1Participant]

Hi
So sorry things have not gone as smoothly as they should have done.
RegaIrding the Myeloma 11 trial I have been on it for the past year. I can only tell you that in the main I have been very well looked after and the only time when I have not felt quite so confident was when I went for my sct and was not under the direct care of my own specialist and her nursing team. I think for me the trial has worked well and I the only down side has been the fact that I have had to have a few more blood tests/bone aspiration etc. but I have felt it to be a worthwhile thing to do.
Why don´t you have a chat with the myeloma nurse on this site ? It might help talking to a professional who is one step removed from your dad´s medical team.

Best of luck
Love Carol

[CarolBradley1Participant]

Hi
Just a quitck note to say welcome to you and your family and sorry your Dad is having such a rough time of it.
You and your Mum are doing a smashing job and I am sure your Dad must feel so grateful to have the support of such a lovely family even if he can´t always show it when he has to take some of the medications – they do make people feel rather moody etc. I am afraid but they do help to make us better. Sometimes my family felt as if I was behaving like a stranger when I was taking steroids because I got cross so easily and have never had a temper before – as soon as I was able to stop taking them I got back to normal thank goodness!
Best wishes to you all
Love Carol xxx

[CarolBradley1Participant]

Hello
So sorry you have all had such a sad and difficult time – and indeed still are. Even though you sound to be coping bravely you must be worried sick yourself whilst trying to be reassuring and positive for your dad. I´m glad you came here to talk as there are lovely people here who understand how much of a help it is to get things off your chest when it´s not possible to burden loved one´s with our worries.

I hope that the brighter days are soon coming and that your dad is more comfortable.

Love and prayers to you
Carol xxx

[CarolBradley1Participant]

Helen,
PS. So glad to hear your going into sct at 0 – fantastic starting point for you I feel quite excited that you must surely have a super long running remission.
Fingers and toes crossed.
Carol xxx

[CarolBradley1Participant]

Thanks Helen – at least I´m forwarned then not te expect too much at first.
Take care
Carol xx

[CarolBradley1Participant]

Hi Helen

In that case we are doing things in a slightly different order as I have had my sct (which by the way has left me now with 0 yes zero paraprotien level!) and am now just finishing my 3rd cycle of Revlimid.

They seem to be so well practiced in this procedure now that I am sure everything will go smoothly and know are in good hands so this is the week to try to relax indulge and pamper yourself!

Nearly forgot – losts of people are finding that if they suck ice cubes, lollies etc whilst they have their Malphalan they don´t get some of the side effects like sore mouth etc. – worth a try I wish I had known about it. We shall all be thinking of you this week and sending air wave best wishes and hugs.

Lots of love
Carol xxxx

[CarolBradley1Participant]

Hi Helen
Thanks for the update about stiff joints and sickness etc. Sounds like you at a similar point of treatment to me – I have just finished my third month of Revlimid.
Glad to hear that things might be settling down over the next few months and I might be able to get a bit more active.
Have a good weekend
Love Carol xx

[CarolBradley1Participant]

Hi Gina
Glad to hear things are a little more positive. You sound such a lovely caring daughter – your mum must feel so lucky to have you but please do look after yourself too won´t you? My carer is my husband who spent the first 9 months up to transplant worrying himself sick and hardly every having a break from thinking how he could make things better,easier etc for me. Luckily my transplant has gone very well and I have been able to persuade him to start seeing his friends for an hour or doing something he enjoys for at least a couple of hours out of the house every day – just anything to get some normality back in our lives as treatment can become something of a part/full time job!
Hope mum gets her treatment sorted out soon and starts to feel better.
Love Carol xxxx

[CarolBradley1Participant]

Hi and welcome!
So pleased you are having a good long run. I managed for just over five years and to be honest if it had not been for my job becoming incredibly pressurised and our elderly mum becoming very difficult and demanding I suspect I would have continued well for quite some time. I should have put my foot down and looked after myself a little better but we all have 20 20 vision with hindsight.

I have spent the last year having treatment and am doing really well (I am even managing to horseride again on good days) but would encourage you to make the most of this time and just keep yourself as healthy and physically fit as possible ready for the time when you may need treatment.
I know how nervous we always were just before a visit to the specialist – it was like waiting for the hammer to fall. It´s very difficult but best thing is to live day by day as much as you possibly can – you could be as well as this for years to come!
Best of luck
Love Carol xxxx

[CarolBradley1Participant]

Hello Gaye

Although I don´t know you may I say a personal "Thank You" for sharing your decision. I think many of us will understand very well your thinking process – for me I know that there will come a time when it will seem more natural to go rather than stay.

I wish you peace and loving support throughout the coming days and I am sure there are many of us here who would want to support you even if only by prayer.

Loving thoughts

Carol x

[CarolBradley1Participant]

Hi
So sorry your mum is so poorly and you are all under such a strain. I was in a similar position to your mum last year and have to admit I felt not only low but a real burden on my long suffering husband. As soon as the antibiotics etc. kicked and I started to feel a bit more positive I saw the relief on his face and realised that this is what families are here for the good and the not so – sometimes we mums have to be on the receiving end of care too – we can´t always just be the givers – it was a hard lesson to learn.

I do hope everything starts to turn around for you all soon.

Thinking of you and your family

love Carol xxx

[CarolBradley1Participant]

Hi Helen
Glad to hear your feeling a bit better slowly and congratulations on the 5 mile walk – you must feel as if your getting somewhere now.
Do you know what causes the stiffness in joints etc. – mine is so bad I walk like a penquin if I have been sat down for longer than 10 mins! Even my finger joints are stiff and painful.
I think Tom onwards and upwards has gone to visit relatives so lets hope he has a good time and comes back nice and refreshed.
Take care of yourself
Love Carol xxx

[CarolBradley1Participant]

Hi -whinge away! sorry your having such a poor time of it. I am nearly at the end of month three of this latest round and am on 25g and feeling pretty fed up. Regarding the sweating no I don´t have that but do have rashes and sheer exhaustion – I am now only managing 4 hours before I have to lie down again for a few hours rest and trust me I`m usually a really busy type also have quite a lot of pain.

Perhaps it will take a while for you to settle down now that they have reduced your dosage my specialist says it does have quite a long shelf life so stays in your system quite a while.
I constantly have a tickly cough which keeps me awake and a feeling of pressure in my ears as if everything is inflamed – how wierd!
Lets hope we both feel better soon – I think they are going to offer me a maintenance dose soon but I`m not really sure. Hope it gets better though as this is hard work.
Take Care
Carol xxx

[CarolBradley1Participant]

Hi Laura

Sorry you have joined us – I`m sure you must be so worried about your Dad. I didn`t have thalidomid but other chemos give similar side effects and they gave me some smashing tablets that really helped with the sickness – please do ask for them. As mentioned already I too found that taking the chemo at night helped a lot.

Take care of yourself as well as your Dad
Best wishes
Carol xxxx

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