[HelenParticipant]

Hi Teresa
Thanks for the message, yes tomorrow I go back, I'm looking forward to it, for the moment…….
It is still raining, we have had a family meal out tonight, normally this time of year we celebrate the summer birthdays outside a pub, tonight we were indoors with a roaring log fire! I've put the heating on for an hour when we got back!.
I'm glad you are able to care for Peter at home, it's not easy but possibly the loveliest thing you can do, I do hope pain relief is sorted soon, it is so wearying and makes you very short tempered, fingers crossed that happens soon.
Love Helen

[HelenParticipant]

Hi Beverly
I probably had smouldering mm for about 3- 4 years before it changed to end stage disease. I thought I was having a bit of a struggle with arthritis, being a 50+ nurse! Don't get too tired or run down and I hope it stays 'smouldering' for many many years.
Love Helen

[HelenParticipant]

Hi Vicki
Colin only needs to suck ice for about an hour max, so I made ice cubes in those bags and took them in a cool bag to go straight into the freezer when we got there. I think I made hundreds of them , I used different flavours from those kids fruit drinks, Ribena, fruit shots, some with very little flavour and lots of them diluted down with water, then I had them in my mouth 1-2 at a time . My mouth was the only bit of me that seemed to function properly of my gastrointestinal tract for the next couple of months! I wish I could have protected more of it:-) We threw away many ice cubes only used about 5 of the packs I made.
I could not bear a fruit lolly now:-P
Love Helen

[HelenParticipant]

Dear all
I didn't have cyclophosphamide priming before my stem cell collection, there were no beds available in the region for the drip to be given!! I was not a happy bunny may i tell you, this change of plan really upset me. However they told me that it would not delay my transplant as they dont always do cyclophos priming in our neck of the woods! I had to have double doses of GCSF and the collection went ahead on the planned days. I produced enough cells for 2 transplants in 6 hours, 4 hours the first day and 2 the second. I got terribly calcium deficient and had to chew many calcium tablets but otherwise was ok. We dont all have hickman lines up here either, just arm veins if they can use them.
My first posting to this site was about the recovery time from stem cell collection. I was told to expect fluey bone pain for a few days. In fact I had 16 days of pain and aches due to the high dose of GCSF but after that I had 10 brilliant days before transplant.
Our hospital also doesn't follow a neutropaenic diet or wear masks or anything, and lots of rest is encouraged, so it very different wherever you go.
Anyway where ever you are, good luck over the next few days all you on the collection and SCT route
Love Helen

[HelenParticipant]

Thanks Ali and Theresa
Wednesday is D day barring further acts of god!
Love Helen

[HelenParticipant]

Dear Teresa
Poor Peter, and you, it must be very difficult, I'm sending you lots of hope that pain control is reached very soon. Don't worry about replying to post, just know we think of you.

A fried garden:-) I'm going to photograph the jungle that has grown here recently due to the monsoon type weather we've had. It is so lush and green, but the rain hasn't stopped for weeks now -I think we've had 3 dry days in 5 weeks, my daugher just had a week off while they sorted out the flood damage. We've never had weather like this here before, one of my friends has a 24' diameter hole in their business yard, where an old mine shaft collapsed last week and several thousand tonnes of gravel are being ordered by the mining authority to patch it up!:-P
Lots of love Helen

[HelenParticipant]

Oh dear Dai,
Hope you are soon back on your feet.
Love Helen

[HelenParticipant]

Hi Gary
As Tom said, same for me, many problems with food staying down so I took the anti sickness tablets and the omeprazole for months after my transplant, I've not lost that much weight but haven't put any on either. Only bland food worked for me at the beginning and there are still many things that I can't eat and the sight and smell of some makes me feel queasy.
Love Helen

[HelenParticipant]

Hi Dee
At the beginning, while you get used to the drugs you are not fit to do much really. It's exhausting and anything feels like an effort. You also are coming to terms with the shock of your diagnosis and the effect it is going to have on life as you know it. From now on he will be a different person. He will be taking stock, prioritising and adapting to this new life of treatment and probably a bit of fear. This takes time but you have to do it at your own pace, try to be as normal as possible but he might need some space too, I don't know its a very trying time.
Anyway, why am I cross, probably for the same reasons, my life has changed, the plans I had, the things I wanted to do, work, friends everything's is a bit different. I don't like the needy, vulnerable person I have had to be over the last 18 months. I want to dig my garden for 8 hours a day and not feel tired, i want to have my old life back ….but I can't have it exactly because i too have changed and need to reevaluate the new me, get used to her! 😛 writing this down though is a good idea, I clearly need to work on this and accept it and make the best of it, but as I say all this takes time and I'm not there yet. So let's just keep the reasons for my being cross between ourselves.:-) Keep asking questions, the more you understand the greater support you will be.
Love Helen

[HelenParticipant]

Hi Ali
Yes I go back on a phased return thankfully. I'm not good at sleeping at the best of times but when ive been ill i sleep during the day more, i think its about having done lots of night duty in the past:-( but the revlimid I'm on as maintenance is on its own, no dex- that's the one which keeps you awake, so I find I sleep well enough if I take it at 9 ish at night. Is your mum on the myeloma xi trial? That's the only way you have a 50/50 chance of being on revlimid as maintenance at the minute.
Love Helen

[HelenParticipant]

Hi David
Do you have much time to do this? My idea may take a while but it is special.
I suggest you buy, make, steal, borrow or invent a small gift for every year which matches with the years.
For example anniversaries have names, this will be your golden.
1st year is paper then there is leather ,tin, copper, china, pearl, silver etc
So for paper you could find a piece of paper, a card, a memento, a newspaper or something that reminds you and hopefully your wife of your first year of marriage.
Leather might be a keyring, a shoe or something, maybe that reminds you of shared milestones, a child's birth. Pearl a pair of earrings etc, quite a bit of research but if you have family and friends who could aid and abet you could wrap them all up, put them in a basket et voila a present, terribly personal. For the years which have no names and there may be some, I've not thought this through thoroughly, put those years together, book a weekend break some where like your honeymoon or a favourite holiday destination and put the booking slip in an envelope. Write her a letter with the years neatly typed and then let her open them and guess where they fit in. Better have a pencil ready, and a tissue:-)
A gift to be opened in front of the family, then a nice meal out or a party I think.
Love Helen

[HelenParticipant]

Hi Ali
I'm much better now thanks, Though back to sleeping all day and awake all night, got to start sorting that out again! Thanks for the compliment too:-)
Love Helen

[HelenParticipant]

Hi Andy
Myeloma clinic, always a Tuesday, multi disciplinary, ask as you get to the desk to see Prof Jackson, be prepared to wait a long time sometimes. Parking is horrible, get dropped at the door by someone athletic enough to walk back over the site when they eventually find a space. Coffee shop is ok though let us know when you go.
Love Helen

[HelenParticipant]

Hi Wendy,
Good photo, where's the new hair then eh? I'm amazed you were back at work at 2 months post SCT. I'm now aiming for my third attempt at going back, having had all those horrible infections and being signed off again and again, anyway onwards as Tom says. And you are right, retirement may not be a financial option, i did request a forecast in january but heard nothing yet despite chasing it up twice already? I need to exercise my mind too so I'll give it a whirl and see how I get on.
Love Helen

[HelenParticipant]

Hi Andy
Well I'll see you in the waiting room at the Freeman then, Tuesday mornings. I had Rev, Dex and cyclophos for my induction therapy, hope it works for you.
Love Helen

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