[HelenParticipant]

Hi Tina
As the others have said, keep your chin up, you will get there eventually.
Love Helen

[HelenParticipant]

Hi Dai
What a relief, I thought you'd never had it! But what a b***** that you have to go through all the palaver again. It makes me mad, and I feel a great urge to pick up my 'crusading' pen and dragging out the soap box again.
Tom what a laugh I shall imagine you with your limp! I think eve is right and I'm just a disability number bad the badge will ensure me a parking space!
Love Helen

[HelenParticipant]

Well I put it in and if I look on my profile the new one is there but……..
Love Helen 🙁

[HelenParticipant]

Ta Da 😀
An update.
New hair, finally.
A style, at last! though it only took him 3 minutes and only the back and sides trimmed by half an incch but i feel more like me again.
No colour, skin still dry and itchybut those hard lumps are now beginning to subside
Helen

[HelenParticipant]

Hi Philip
Welcome, sorry you have to join, but there are a lot of very helpful people here. I'd be careful as Mari says, a lot of the muscular pain I had before my diagnosis I now know was bone pain from the myeloma as it has now pretty much gone and I'm doing very little physical stuff apart from walking. I found paracetamol and lots of walking helped to reduce spasm and cramp.
Good luck
Helen

[HelenParticipant]

Hi Tom say hello and send a hug to Bridget from me too
Helen

[HelenParticipant]

Hi Mavis
Progress is good… Hope they have got you on your feet again. And as the pain settles you might find it easier to get around.
I found that the dexamethasone worked wonders on the arthritis in my hands and now hope it works on all your painful joints too. The difficulty with mm and arthritis is working out which pain is caused by which condition, I don't envy you.
Hope you don't get side effects and the drugs do their trick
Love Helen

[HelenParticipant]

Dear all sorry it's a group reply again, thanks for all your advice here, I feel as though I just put a stick in a hornets nest I got such a flurry of replies:-)
Elaine- I still can't get used to the thought that this is so permanent and I feel I have to go back and see what it's like, I hope as Dai suggests that the phased return will let me see how far I've travelled and just what limitations both my physical state and work impose. My mind needs to be sure that this is the right decision. My manager was really good and I think will be helpful if it becomes too much then I'm not going to be a martyr. I do worry about the increased shopping time and significantly reduced income:-(
Scott – I had a look at the blue badge form and abandoned it….. I don't think I qualify …. I don't feel ill enough….though I might do at the end of a day back at work:-) 😎
Eve- I wish it were enhanced pension. As I'm at the end of my career I only contribute for another 23 months and I opted to go at 60 not 65 on the day before I got my diagnosis, otherwise they would have to make it up to then, and at the rate we are going I might well be 60+ before I get any news from the pensions people.
Dai – Why did you not have ESA before now? Surely you should have qualified long before this, I find it outrageous that you haven't. Work sent me the form in January and I sent it off, I got a letter back asking me to phone the agency and I spoke to a very nice chap for about 30 mins, and had the money in the bank 2 weeks later. That was the most positive experience even though there were several more forms to fill in afterwards,
And Tom you are so right about it being a mine field ….. With no map….
Anyway I'm feeling more positive about it all so thank you very much for all you help;-) 🙂 😎
Love Helen

[HelenParticipant]

Hi Jean
Keep the appointments, they may bounce back as the others have said. I had a neutropaenia of 0.6 – 0.9 for that year before my diagnosis – which was missed- twice and apparently lots of fluctuation here can be one of the indicators of smouldering mm. They did ask if I had any infections in that time… I never did.

Also I've now got most of my meds for NZ , antivirals for all the time I'm there, 2 different types of antibiotics and when to use them, calcium, aspirin, revlimid, a thermometer, and they think heparin injections for prior to each long haul flight and a great long letter for emergency use. Now I just need a large bag!
Love Helen

[HelenParticipant]

Hi Scott and Teresa
Lovely pics
Helen

[HelenParticipant]

Eve I will think of you while I'm there Helen

[HelenParticipant]

Hi Teresa
How did the hospital visit go?
Love Helen

[HelenParticipant]

Hi all
Ostrich now removes head from sand, I didn't buy the cake stand- too dear.:-(
I saw the boss today.
It was less traumatic than it could have been and I managed to keep calm and not cry! No idea what will happen but he went off with a list of things to find out about going back, and will let me know.
In jan I asked about ill health retirement so I could plan, knowing the facts about finance. I still have heard nothing. I've seen occ health and they want to see me again in June as I was too ill in march for them to recommend anything. So I've said I'm going back at the end of June, see how I get on with a phased return and we go from there. The only thing occ health were keen on me getting was a disabled badge! So I can park in the staff car park. What's that all about?
Helen

[HelenParticipant]

Hello Tony
Its a funny place to meet people, I too am on myeloma xi trial. I have oligo secretory light chain (lambda) mm and was diagnosed in feb11. I had 4 cycles of revlimid etc which took me to complete remission, then sct in August 11. I've been on the maintenance arm of revlimid since then and am slowly returning to fitness.
Hope your journey is uneventful.
Helen

[HelenParticipant]

Mmm ……. but charming new photo
Helen

[Author]

Posts