[DebsParticipant]

Hi Keith
Great news (though sorry to hear about the itching!). I'm doing well thanks, unfortunately I have to go back every month due to being on the Revlimid maintenance arm of my trial. But I think I am lucky to be offered it so I shouldn't complain!
Feel like this week has been a breakthrough as I haven't had a sleep all week (apart from the odd nap in the car!) with it being half-term and the kids being off school. Nick took the week off work and we've done Warwick castle, London, Derby and off to Legoland tomorrow. I couldn't have imagined doing one of these things 2 months ago 🙂
Here's to a long long remission for both of us..and Jet, who I believe is doing well according to her fb pages.
Take care (and thanks for wondering about us!)
Debs x

[DebsParticipant]

HI Sarah,

Sorry to hear about Henry….rubbish news and I'm not surprised that it is hard for you at the moment. Life does get easier once you have had time for the news to sink in, and you learn coping mechanisms.

I had my SCT in July..I am 36. I have to say that I think one month post transplant is optimistic, but it really does vary patient to patient….and I'm not sure it is age related. I am 3 months post transplant and still need to sleep in the day once or twice a week (although touch wood I may be moving past that at this precise moment!). I spent the first month sleeping quite a lot, and the second month having one sleep every day. Month three saw things calming a little and not needing a sleep every day. But I can't imagine having gone back to work at that point….sorry if that isn't what you want to hear. But also, perhaps because I am a stay at home mum, I didn't need to worry about it and so didn't try it.

The SCT isn't nice, but I have forgotten half the facts about it already (a bit like childbirth!), and like you, hope to live long and grow old(er!) with my husband!! Got too much to see with our kiddies too!

If you want more detail, feel free to drop me an email at gascoyne2@virginmedia.com or I do have a blog if you want to see what things were like (though I warn, that I didn't hold back much so it may be hard going and cause a few tears!)…that is http://www.wordpress.com/debsjourneywith myeloma

With all my thoughts
Debs x

[DebsParticipant]

Hi there.

Helen, still in the Myeloma XI trial and doing well. The hair is growing…seems to be sprouting all over the place now! May even need a hair cut soon…lol!

Keith, as David says, it may be different consultant to consultant, but mine said that I didn't class as complete remission because my pp wasn't zero. Apparently you need to have a bone marrow of less than 5% and a pp of zero. But then again, some people don't have the bmb so I'm not sure quite what happens then!!

Debs x

[DebsParticipant]

I know the Marsden is finally giving it subcutaneously but also that if you are on a trial it ISN'T available. Hopefully one day even that will change as there's no way I'd have velcade again unless it wAs subcut. The pn has been too uncomfortable.

[DebsParticipant]

Gina
So sorry to hear that. Must be so hard for you and your family.
I hope you have some time ahead to unite as a family
Debs x

[DebsParticipant]

Hi Kay,
Well it is actually my 100 day today…I think!! Happy Bday to me!
I too get achy bones….feels like I've just done loads of exercise and is mainly in my calves. I think it is the PN personally as it gets better with the morphine….well not better, just more bearable.
I am now on gabopentin and nortryptalin. It helps the PN loads and along with the morhine I can forget about the pain/ discomfort….just get tingling feet as it all starts to wear off and before the next dose is due!
I hate the fact that I am going through this and the menopause and all this after a transplant, but like you, am grateful my transplant wasn't any worse and that I didn't really suffer in the aftermath.

To give you all hope, this week, Tue was hospital all day, Wed I went to the London Eye and Aquarium with the family, Thursday we pottered round the house, Today we went to Warwick Castle all day, tomorrow is off to Nick's nans, Sunday is off to our local caves and friends over in the afternoon and Monday is Legoland!!!! So life does go on (athough I think I may have to find space for a nap tomorrow at some point in the car journey to Derby). I'm no superwoman but feel that this week I have really turned a big corner, helped by the news that I am in Very Good Partial Remission 🙂

Onwards and Upwards!
Debs x

[DebsParticipant]

Hi Dai,
Sorry that you are ill…you are right about the weekend thing…I felt awful on Thursday and Friday, and probably should have been sensible and not gone to the London Infoday today. Especially since my son was sick this morning!! Typical!
…..I did go though and had a headache throughout the whole day which I've finally knocked on the head with a couple of paracetamol.
Anyway, enough about me….hope you didn't get admitted – you've gone quiet so I'm thinking you might have been 🙁
Hope Janet is ok too!!
Debs x

[DebsParticipant]

Hi Gilly,
You don't say how long you have worked for them or what your contract says? BUT you are covered by the disability discrimination act and they should be prepared to make 'reasonable adjustments'.
I would suggest you or your union rep should go to Acas and ask for some guidance as you might have a strong case. Your local CAB might be able to help you too…they can often help with the legal side if you can't afford a solicitor.
Sometimes, just a little letter reminding them of their obligations as an employer can be enough to remind them of what they should be. Those rules re sick leave should be aimed at those who are swinging the lead…not people like you with a genuine illnes.
If you don't get anywhere with the CAB/ Acas, message me privately with as much detail as you can and I will get my brother in law to take a look (I and he work as HR Professionals but he is up to date where I'm not! He does all the HR for smaller businesses who can't justify their own HR staff)
Good luck with it all though
Debs x

[DebsParticipant]

Gill, you made me laugh! 🙂

Don't be put to shame….we all deal with stuff differently and for me it is the best way of forgetting what is going on….I find it hard to do that if I am not running round like a headless chicken!!! And I also find it a challenge to raise BIG money – I hope the ball next year will do that – would like to raise £5k minimum but we'll see!!!

Signing off,
Miss Hairy to be Debs! x

[DebsParticipant]

Hi Scott
Have a good party on Saturday!!
Will try to pass on best, but you know what these consultants can be like….very elusive!!
Take care
Debs x

[DebsParticipant]

THanks Gill – not sure if it's good or bad that I'd be recognised anywhere!!
Someone the other day said they wouldn't want to bump into me on the street – maybe I wasn't smiling then!!
Doing ok thanks….waiting for 3 month post-SCT results on Tuesday so a bit nervous in case of relapse, but keeping busy organising my tabletop sale, and have also started to organise a ball for next November!! Much better than dwelling on the unknown!
Debs x

[DebsParticipant]

Hi Elaine,
Welcome to the site and I hope it is as helpful for you as I find it. I think it is full of lovely, caring people!
I hope you cope with your treatment. It seems that each treatment is different for everyone so it is hard to say about side effects, but just make sure you mention everything to your consultant/ nurse specialist. They should be able to help.
Good luck
Debs

[DebsParticipant]

Hi Helen

Tabletop sale is on the 6th November but we've made £150 already on a gym membership that was donated….am hoping to get over £500 in total. Then on to organising the ball I want to do next year!!

Tracey, that is very kind of you but VERY misguided. I could only wish to look like Kate. Sadly neither my face, nor my body looks like hers!! lol!! Maybe if I have another transplant the extra 3 stone will drop off!!

Debs xx

[DebsParticipant]

Thanks for thinking of me Keith…..funnily someone else I know forwarded on this article to me.
I'm not sure I'm bad enough at the moment (fingers crossed) and I'm not sure how they'd do it for me anyway, as my pain is in the whole of my lower legs and my feet. However, they had said that patches/ creams were around if the drugs didn't work.
I'm on nortriptylene (or however it is spelt!) at the moment and that is helping a bit (although it made me really ill when I upped the dose of it!)
Anyway, the more things like this they come up with the better in my books!
Thanks Keith
Debs

[DebsParticipant]

Hi Jo,
Great….will look out for you too!!
Debs x

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