[HelenParticipant]

Dear Eve
It's such a tough journey isn't it? You try so hard to keep optimistic and forward looking then it gets up again and bites you on the bum. I really do feel for you and Slim.
Thinking of you, keep in touch
Love Helen

[HelenParticipant]

Hi Ali
I've been to stay with friends for a few days and shopped with my son, we are out for our 30 th wedding anniversary dinner tomorrow, so he needed a while outfit! Poor student see.
The vaccination thing is different everywhere and must be a bit of a pain. Like everything connected to mm nothing is simple, bmb for me this week….. I'm getting quite twitchy about it all now…. I still feel very well so am hoping it is still a blip.
Hope you are chocolated to bits, it's too cold for anything else
Love Helen

[HelenParticipant]

Hi Jean
Lovely holiday thanks, bit of a shock to the system coming back to yet more snow! I had low phosphates and calcium after SCT and had lots of bags of the stuff very slowly so had to drink loads to get the fluids in, not easy when you feel sick!, I've also been on calcium tablets ever since as it stayed low, it's a very odd feeling of tingling in your lips hands and feet and you get cramp too so not much fun. Hope the kidney problem sorts it's self out soon.
Love Helen

[HelenParticipant]

Hi Lesley
I coloured my hair as usual during my chemo treatment and only stopped when I had my transplant date, the hairdresser did use a mild colour no bleach, now I'm going the whole 9 yards, it does wonders for the morale.
Love Helen

[HelenParticipant]

Hi Ali
Thank you, I'm feeling really well now so it's a bit of a pain to have rising numbers, bmb after Easter to see what is going on, fingers crossed that it is a long time before I have to start treatment again.
I'm just back from sunny Lanzarote, back to the freezing sleet and snow, can't believe it's still so cold. Has your mum managed to get away yet?are you doing something exciting with the children over Easter?
Love Helen

[HelenParticipant]

Hi Jean
I see Frank is doing ok still? Any sign of coming home yet?
Love Helen

[HelenParticipant]

Dear Eve
I'm just back from the sunshine to the current snow! and in catching up on the various post I am saddened to hear of Slim's 10% rise. When are you back at the clinic to find out what happens next? I always feel so close to you as our diagnosis days were so close together. I go for bmb after Easter. It is all so disappointing really.
Love Helen

[HelenParticipant]

Hi Andy
Ha ha, you would have laughed at my son then, he went to a fancy dress party recently ….. As the genie from the cartoon Aladdin……. He is very large! Anyway the girls shaved and waxed his head, arms, legs, neck and dear knows where else……. I didn't ask……. then they painted him with blue latex paint … It was very painful he said, however he had the undivided attention of the girls while they did it so I guess it served its purpose ….
We must meet for coffee again
Love Helen

[HelenParticipant]

Hi Babs apparently that includes relatives, friends, fundraisers, carers and patients. Our support group met this week too, there are some very nice people at it, one or 2 also read the site.
I feel very well so it's rubbish that my numbers have decided to start climbing again but I knew it might happen. Just have to wait and see what happens next. My treatment is unchanged until after bone marrow biopsy next month.
Love Helen

[HelenParticipant]

I know the answer to that……. It is about 3000 members registered ….. And you all know far too much information about me!
Love Helen

[HelenParticipant]

Dear Babs and Eve and Dai as its your thread
You both made me laugh today, not something I've felt like doing for the last few weeks, I'm afraid I'm avoiding looking at the elephant at the minute!
With all this talk about hair again, you saved me some bother …. as i was thinking of pulling up my 'keeping up appearances' thread yesterday, to give an update for the girls ( and boys if they are interested!). on how I have just had to shave my legs for the first time since SCT ! As they have just grown back! And how my next door neighbours mother, whom I see infrequently, didn't recognise me as I looked so much younger than the last time she saw me, so….. Clearly an SCT makes one look well and youthful. I'm away on holiday on Sunday , with smooth legs.
Love Helen

[HelenParticipant]

Hi Jean
Things seem to be progressing according to plan, how are you all doing while you watch him? I hope it's not too difficult for you and Frank continues to be interested in the football,

Vikki – I know what you mean about pain, at our hospital, if you live close by, you can be an outpatient and just come in every 2 days for bloods after the SCT, …. so that was my plan! This was not to be….after day 3 I was admitted because of the pain from my throat to my stomach and put on morphine. One of the nurses said it was unusual to have so much pain, but later I found out that almost as many patients get severe pain and need morphine as those who do not. So once again myeloma and its treatment depends on the individual. Up til then I always thought I was just wimpy!
Love Helen

[HelenParticipant]

Dear Dai
Sounds as though you have covered everything, hope it all works and you keep infection free
Love Helen

[HelenParticipant]

Dear Ted
The mm cells develop in the bone marrow by hijacking the antibodies which are part of our immune system.
In smouldering mm there are not so many mm cells but you are more still inclined to pick up infection.
when they reach a critical mass they stop other cell production and wreak havoc then it is the time for treatment and mm is diagnosed
All surgery carries risk
In the elderly or those with compromised immune systems the risks are greater so surgery is weighed to decide if it is urgent or will progress to urgent as Jane describes or nonurgent as Phill and Ann said.
If you had a fractured limb that needed pinning or a perforated appendix and would die without the surgery even with mm it is worth the risk in doing the surgery.
If you have something which is uncomfortable but diet or painkillers will assist, then it is nonurgent
I do think you should speak to your nurse specialist or phone Ellen on the site
Helen
Ps I'm a nurse as well as having mm

[HelenParticipant]

Dear Jean
I didn't want to see anyone when I had my SCT, from about day 4 to 12, I have little recollection at all, I went back to my August 11 posts today to see what I did…….. Very little until 28 days seemingly, and my son says that on the days he came to see me I just grumbled at him and sent him home again! Do remind Frank to take the anti sickness tablets as regularly as they will give them, you usually have to ask for them separately, and take pain relief regularly if he thinks he's in pain, these can be controlled and he doesn't have to suffer.
You hang in there
Love Helen

[Author]

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