[DebsParticipant]

Hi Sarah,
Yes you are normally able to get a blue badge….answer the questions thinking about his WORST days…..it has been a godsend for me, especially when I was on velcade and post SCT when every few steps makes a difference. It also saves you quite a lot on parking as it is free in a lot of places – makes up for all the petrol spent on hospital visits!! Also speak to MacMillan as they are great about working out what benefits you can get…the Maggie centre in Oxford should be fantastic for you! They were helpful with me and they aren't my nearest one (though they are only 25 minutes away)
Take care and keep smiling!
Debs x

[DebsParticipant]

Sorry Sarah,
Got that totally wrong!
It is http://debsjourneywithmyeloma.wordpress.com/

Hope that works for you!
Debs x

[GillParticipant]

Hi Sarah

Sorry to be late into this thread. My husband was diagnosed at 53 in Nov 2008 One of the chemo nurses told us to apply for a blue badge straight away as anybody receiving chemotherapy was entitled to be considered. Stephen was also told to fill out the form as if it were his worst day.

The nurse (bless her) said that you don't get much from being ill you might as well at least have a badge.

Debs is right, when Stephen is in a bad way it does make getting into buildings easier without a long walk. He does not bother with it on good days as he is always pleased to feel "more normal" and be able to walk further.

Parking in most places is free for blue badge holders (SHAME ON YOU Kings College Hospital. They charge the earth for parking badge or no badge)

Regards Gill

[Anonymous]

Hi Debs Do you know if they let wives stay overnight at churchill hospital in oxford?
sarah
xx

[mhnevillParticipant]

Hi Sarah

Though I can't add anything to all the good advice and information you've been given, I just wanted to welcome your and Henry to this site and wish you all the best as the treatment progresses.

It is a sharp learning curve.

All blessings.

Mavis

[tomParticipant]

Hi Sarah and Henry

Hope all is going well ? for you Both, as for the urine infection I used to get that when I was on my CDT 🙁 but it was soon cleared up and I think it was because I didn't drink enough Water we need at least 3 Ltr a day :-0 and i found that hard work to start with :-S especially on my Off days :-/

Good Luck

Love
Tom "Onwards and Upwards" xx

[ali49Participant]

Hello Sarah and Henry

this is an extreme way to meet new friends isn't it?!! I was diagnosed in January this year and was randomised onto a dialysis trial at the Churchill as the Myeloma had caused my kidneys to fail. I had chemotharapy as well and have been dialysis free and back at work full time since May.

The haematolgy ward does have a place for family members to stay, I think they have a flat. Also facilities on the ward like a tv room, tea/coffee etc.

I agree with Debs that Maggie's place is also a great place to take time out and talk to someone away from the clinical setting.

I have found great help and support from the people on this forum and I'm sure you will too. Stay strong, and take one day at time for a while.

Best Wishes
Alison

[clarabellParticipant]

Hi Sarah and Henry, welcome I see you have already had lots of great info I pop in and out of the discussion forum from time to time and find it is a great place for info and advice. My Dad was diagnosed with Myeloma at the start of the year worked through CTD until cycle 4 and then he was just too tired. He wasnt suitable for STC as he has amyloids in his kidneys so I cant comment too much on STC. I can however tell you that my Dad completed CTD in 7 cycles and his paraprotiens are within normal range, he is still off work as his job involves shifts day and nightshift. He is slowly getting his mojo back and after a difficult and stressful year we are all looking positively to the future, my Dad has every intention to return to work in the next few months. I know its difficult to keep a positive outlook when you are thrown into a world of jargon and things you never new existed however keeping positive will help you all through the journey, sending you love and positivity Clara xxx

[eveParticipant]

Hi Alison
So nice to see you posting ,and to know your kidney problems were resolved,good to hear you are back at work.Eve

[ali49Participant]

thank you Eve, hope you are doing well too.
The decision has been made to harvest some stem cells anyway and then they will be on ice should a SCT be an option in the future. Looking forward to those G-CSF injections:-/.
Alison

[eveParticipant]

Hi Alison
It is my husband who is the MM patient he is doing much better,just wish I had some dex to give me some energy. lol.
Good idea to ice stem cells,never thought of that,Slims lungs were not good after septic pneumonia all talk of SCT postponed now on Velcade.

Anyway so nice to hear you are back at work and doing so well,you must be very pleased to have your life back.I do not know if you had a chance to chat with jo on hear,she has problems with kidneys and chose not to go for SCT.
Let us know how things go,it is so nice to hear good news.Love Eve

[eveParticipant]

Hi Sarah
How are thing going,are you still trying to come to terms with things,do not worry thing will get better, just take it one day at time,make sure hubby does not work to hard .Eve

[GlynjParticipant]

Hi Sarah my husband also has 1ag myeloma but it is not kappa light chain .He had a stem cell transplant in aug this year .He returned to work on Mon part time.He is having a donor transplant in the new year. Every problem that occured they seemed to have a remedy for .We had quite an ordeal last year when he got h1n1 flu and was in intensive care for a month but they even dealt with that.He is on myeloma 11 trial is your hubby on a trial

[GlynjParticipant]

Hi eve as you can see from my post to Sarah John had flu last year he also had sepsis and his transplant was delayed. He should have had it in dec 2010 .After 5 cycles of revlimid dex cyclo, he got the flu his immune system was so low they put him on life support.when he recoverd he went on velcade. He had his transplant in Aug this year .He has been great these past few weeks. Ihope all is well with your hubby soon

[eveParticipant]

Hi Is it Glynis or Joyce
I know i have asked you before,but lost track of who you were, having no picture and so many new people coming on site,I get mixed up,but i know how difficult I found it to post a picture,could not get the picture right size,and thought at my age,a close up is a no no,so settled for my dog lol.

Thanks for posting about your hubby,as you are aware,no one is talking about SCT for Slim,because of blood clots and damage to lungs,but its lovely that your hubby managed it,so keep my fingers crossed it might happen,but first he have to achieve remission,will know if Velcade is working on Friday.

Jo,s sword is hanging over our heads at the moment,but when you hear good news such as yours,it does cheer you up.:-)
Love Eve

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