[andygParticipant]

Hi Helen.
Sorry to hear your still having trouble with your chest but at least you now know the cause. I'm just getting over a cough and cold and a couple of infections I arrived home with after our lovely holiday. I'm starting to feel normal again now – well as normal as I get to feel on RCD. I've been taken off the cyclophosphamide for the time being as my neutrophils and platelets are a bit low!
I'm due to see Prof Jackson again tomorrow (Monday) if he's not too busy else where again. My appointment is a 2:30pm we should arrive early, hopefully, due to setting off early because of the roadworks on the felling bypass! So may have time for a coffee and a catch up if your free.
Hope to see you tomorrow.
Take care
Andy xx

[andygParticipant]

Hi Vicki & Colin
I'd just like to add my congratulations. It's been a uphill struggle but your up there now. Let's hope it's all down hill to a successful sct and on to full remission.
Wishing you all the luck in the world
Andy & Steph xx

[andygParticipant]

Hi Vicki & Colin
Hoping everything is going well.
All the best from Andy & Steph lazing in the Greek sunshine xxx

[andygParticipant]

Hi all
Whoops I forgot to say we're on the lovely island of Kefalonia. Thanks David for the reminder 😉
Tom I'm not rubbing it in 😉 just the sun cream and lots of it because it's very sunny here. How's the weather in sun scummy?
:-0
I'm keeping well hydrated with the local brew and the occasional bottle of water.

Take care
Andy

[andygParticipant]

Hi Mari & Steve
Good luck with Steves SCT I hope everything goes smoothly and a long remission is achieved.
Wishing you well.
All the best.
Andy xx

[andygParticipant]

Hi Helen
What a waste of time! Prof Jackson was at a conference and we saw one of his underlings who knew nothing about my case. So was sent on our way with a you'll probably receive a new appointment in the post! Not good.
Hope your chest infection is improving.
All the best
Andy xx

[andygParticipant]

Hi Vicki, Colin & Tom.
Weather update – woke up this morning to thick fog! I think the sun is avoiding us.
Hope you all have a sunny weekend whilst we hide out in the pubs 😉
All the best
Andy xx

[andygParticipant]

Hi Vicki & Colin.
Another day draws to a close in the lakes and we've had no real rain! We. Actually saw the sun for a few minutes today 😉 Anyway we've had a good day. Did a little walking and a bit of sitting on our way round tarn hows and then had a beer and a bite at coniston. I'm now tired out. Hopefully the sun will shine a bit longer tomorrow.
Glad you got all your questions of your chest you must feel better now you've asked them fingers crossed they come up with the right answers for Colin.

All the best
Andy

[andygParticipant]

Hi Vicki & Colin.
I really hope you get the prelixalor funded and it does the job. I've been told my bone marrow is not up to producing enough stem cells for a sct due to the battering it has taken through all the different chemo drugs I've tried. If I remember right Colin has only had one type of chemo so hopefully his bone marrow won't be too damaged. Fingers crossed.
We're now in the lakes 🙂 and typically it's raining 🙁 but tomorrow's another day and anyway it's dry in the pubs 😉

Wishing and hoping for the best for you both.
Andy xx

[andygParticipant]

Hiya.
I think you'll find we all struggle with sleep at times. I'm not working so I can nap during the day if need be. Fatigue is also a side effect of mm and you need to listen to your body and rest up when it tells you. Steroids are especially hard on sleep. You need the support of family, friends and work to help through the difficult mm journey.
All the best
Andy

[andygParticipant]

Hi Eve.
It's great news that Slim is in complete remission and you can think of trips away rather than trips to the hospital. With all that you have both been through recently you deserve some good times. Have a great time on your trips away.
All the best
Andy

[andygParticipant]

Hi Vicki & Colin.
I'm so sorry to read your post. It must be heartbreaking. Hopefully tomorrow will bring a big change. I know what a big blow being told something isn't working is. I hope they allow you to use plerixafor to boost Colin's cell production. I've not been down the sct road but I'm sure there must be another plan. To get so close and to be denied by money constraints is not only cruel but criminal in my eyes.
Got my fingers crossed for you both.
All the best
Andy x

[andygParticipant]

Hi everyone.
Thanks for all the posts. It's a strange old disease this mm if it wasn't for my back I wouldn't know I was ill. Oh and besides the drugs side effects which luckily I don't suffer too badly from. All my fiends say when I meet them that I look well! I'm even getting my taste for beer back – though the hangovers are a little to easily achieved :-/ Food isn't a problem either at the moment. I'm looking forward to sampling a few ales in the lakes hopefully in the beer gardens. It'll be good for Steph to get away from work and relax for a while.
Unfortunately I've been told due to all the different drugs I've been on and not responded to my bone marrow will have been to damaged to be able to produce enough stem cells for an auto transplant. So the plan is for me to stay on the regime I'm on till the mm starts to show some progression and then to try a different cocktail. With an allo transplant – if a match can be found – further down the line. I'll have more details after I've seen Prof Jackson on the 11th.
Thanks for all your support.
Looking forward to a sunny break 🙂
All the best
Andy

[andygParticipant]

Dear Teresa.
Like Helen I don't have the words to ease your pain of the loss of Peter. Hopefully time will lessen the pain and your memories of Peter will be mainly of all the good times you shared together.
I found your post very emotional and brave.
I hope the future is kind for you and know that we are all thinking of you and your family at this difficult and very sad time.

Lots of love Andy & Steph xxxxx

[andygParticipant]

Hi everyone.
Thanks for all the good wishes for my appointment on Tuesday. I must admit the closer it gets the more anxious I'm becoming 🙁 Anyway as they say worrying never changes anything so I'm trying to be as positive about it as I can be.

Dear Teresa my back pain has eased off since my radiotherapy. So as long as I don't overdo things it's not too bad. Not that it takes much to overdo things. The rain has eased off here though I saw on the news tonight some parts of the country had some flooding today again.

Helen my appointment on Tuesday is for 1pm does that fit with you being able to meet up for a coffee? I hope so.

All the best
Andy

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