[andygParticipant]

Dear Teresa.
We're so sad and sorry to hear about Peter. We hope you are managing to cope with your sad loss. We hope you have your family and friends support in this difficult time. It's difficult to find words of comfort for you but please know that we are thinking of you and your family in this time of sadness.

Lots of love
Andy & Steph xxx

[andygParticipant]

Hi Michele.
Welcome to the forum that we'd all rather we had never heard of.
It's good you have come through your treatment well. As you'll know by now nearly everyone ones journey with MM is different so the more contributors we have the better the MM journeys are covered.
I look forward to reading your posts as you enjoy your long and healthy remission.

Take care
All the best
Andy x

[andygParticipant]

Hi all.
Just thought I'd add to the benefits discussion. I get the higher rate DLA and mid rate AA and I also get ESA. Just got my blue badge too. I had help with the DLA form from a charity at my hospital. My specialist nurse and consultant both told me about them. So I would advise everyone to ask for help with the form because it's a nightmare to fill in right. Answer the questions as if you are on one of your really bad days too – not your average day and definitely not as if your on a good day. But do please get help. You are entitled to it.
Oh I can feel a soap box moment coming on! I'd better lie down for a while.

All the best.
Andy

[andygParticipant]

Hi Paul.
Well done. Glad to see DT PACE did the trick for you. I hope the SCT goes smoothly and you have a long and successful remission.

All the best

Andy

[andygParticipant]

Hi Mari.
Great news. Have a fantastic holiday.
Love Andy xx

[andygParticipant]

Hi Mike.
Welcome to the forum. You'll find lots of support and friendly advice here.
Everyones MM journey is different as is their response to treatment and the drugs. Hopefully you'll sail through it to a stem cell transplant.
I was diagnosed at 53 too oct last year – unfortunately my back was quite badly damaged. I'd been on the sick 6 months with it before diagnosis! I would urge caution lifting anything at the moment because MM softens your bones and you will be liable to more damage to your vertebrae. Back damage is a very common symptom and can be very painful. I speak from experience :-/ Hopefully you've been caught early enough and your back won't be too badly damaged – wait for the results of your MRI before you test your back out.
Feel free to ask ANY questions you like you'll always find someone willing to answer or point you in the right direction.
Take care.
All the best
Andy

[andygParticipant]

Hi Dai
Sorry to here your going through a tough time again.
I'm with you on looking ok whilst on the inside we are fighting MM. If I had a pound for everytime I was told I looked well I'd be a rich man. Sometimes when I'm not so well I want to shout 'I may look ok but inside I'm dying' but I don't and just smile. I think everyone is well meaning and trying to boost moral but at times I wonder if they really know what MM is all about.
That said I would rather look well to the outside world than look like a victim of cancer.
Take care Dai.
All the best
Andy

[andygParticipant]

Hi everyone.
Thanks for all your good wishes
Here I am a day post radiotherapy with no major side effects as yet. Just a pleasant warming in the small of my back.
Helen I did have a numbness in my left leg and foot but it wasn't too bad – that has gradually reduced since I started on Revlamid – my nurse said the Revlamid sales person said that could happen! Anyway I'm hoping the radiotherapy will clear it totally.
My long term catheter was put in after my first radiotherapy to relieve pressure on some nerve or other didn't improve my urinary function. I had an examination and tests in the urology department and it was found my bladder muscles were not functioning. The causes were probably I was told either drug related or spinal damage related!
I am hoping the latest radiotherapy does 3 things – 1 eases my lower back pain – 2 make the slight numbness in left leg and foot to clear up and – 3 enable me to get rid of the catheter.
I suppose with MM 3 out 3 would be unusual but as Meatloaf said 2 out of 3 ain't bad. 😉
All the best
Andy xx

Now where is my Bat out of hell album!

[andygParticipant]

Hi Jen
It's good to hear your dads kidneys have improved. Sadly fatigue is something us MMers have to but up with – I find if I want to get anything done it has to be done in the morning because by 2pm I'm worn out and only good for reading or watching an old film on tv. You've got to listen to your body and not ignore aches and pains.
Sorry the young ones are ill I hope they're better soon.

All the best
Andy x

[andygParticipant]

Hi Dai.
That's good news. Hopefully you'll settle down back to a bit of 'normality' now.

All the best Dai.
Andy

[andygParticipant]

Hi Teresa.
I'm having radiotherapy on my lower spine because there is an active area there that could be causing some back pain. So they want to zap it 😉
I've not got my appointment to see the Prof. yet though it seems his myeloma clinic is on a Tuesday as I've been told by people in the know. Hopefully I'll get an appointment through the post soon.

Love Andy xx

[andygParticipant]

Hi Keith.
I think it's the Revlamid that causes the cramp. I get it also though not to bad. My feet and calves are the main culprits though I did used to get some stomach cramps too. I also suffer fatigue on the second day off dex. The reason I don't think it's dex causing the cramps is I've been on dex at the high level a while now whilst the cramps started when I started on the Revlamid and usually come on after I've taken Revlamid.
Hope this helps.
Andy

[andygParticipant]

Hi Dai.
Sorry to hear you and Janet are not feeling well I hope you both have a speedy recovery.
It's strange how our different hospitals have different guide lines. I am told if I ever feel unwell or if my temperature stays over 37.5 for more the 3 hours or if it exceeds 38 to ring the hospital ASAP or if it's during the week in day unit hours to go straight there.We have 24/7 access to the haematology ward. I guess it probably because our hospital is smaller than Nottinghams. When I had a temperature of 37.8 I was thoroughly examined and sent home with antibiotics and told to report back the next day which I did and my temperature had risen to 38.9 I was then put immediately put on a drip and admitted for a 4 night stay on IV antibiotics and hydration. They never discovered what the source was.
Keep the thermometer handy Dai and check regularly.
I hope your run of bad luck is over soon.
Get well soon – both of you
Andy

[andygParticipant]

Hi Min.
Thanks for the info. I have met Prof Jackson before at a support group meeting and as you say he was very approachable and easy to talk too.
Hi Teresa.
Just posted to you under carers 😉 This will be my second dose of radiotherapy and it's not at the same site. Though it is close to it. I was just thinking about how my back will cope with lying still whilst I get zapped – I think I'll take some pain killers before I go. It seemed to do the trick when I went for my MRI.
What a lovely thought you had about meeting up around a coffee table and pretending everything was normal. Talking about the weather, plants in the garden, your son in laws latest brew, Helen's trip to New Zealand it would be great to leave MM behind for awhile and have a good laugh.

Love Andy xx
Oh and yes I'm on dex and not too sleepy yet 😉

[andygParticipant]

Hi Teresa.
We over here would love some of your excess sun. Though I think the temperatures you are having to endure are not good. Apparently there is no immediate end to our damp and soggy weather in sight 🙁
I'm sorry to hear about Peter being in pain I hope they find the right meds to get him pain free ASAP.
I know when my back was causing me severe pain just before Christmas I was admitted to hospital and given lots of pain relief I became very withdrawn and Steph said I lost all interest in everything. So I think too much pain killer can be counter productive too. As with everything with this awful disease there is no one hat fits all.

We are thinking of you and Peter
Love Andy & Steph xx

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