[tomParticipant]

Hi Meika,Christin and of course David

Like all the others above I also welcome you to this wonderful site.

You all have had some great advice fromthe others that at the moment all I can add is:::; take it one step at a time, and when David want to rest let him and not forgeting you two Mum and daughter you both also need to look after yourself.

Love and Hugs sent to you all

Tom "Onwards and Upwards" xxx

[MeikeParticipant]

Hi Dai,

Thank you so much for your very encouraging reply!

David has started his 3rd cycle of Velcade on Friday and had a couple of good days on Dex, we even took a trip to our local B&Q yesterday for some manly shopping. He took great delight in using one of those electric scooters they have in store for people who are not so mobile?

Today is an other matter?lots of pain and coming off the dex does not help, he has developed a numbness above his wee belly pot tummy and his breathing is becoming difficult.

We are very blessed to have amazing friends who call in all the time. Some cook and bake for us which is such a help.

Christin and Mat build a path out of our front garden to make it easier for David to get to the car. They did such a great job on it?Daddy gave his usual advice and supervision throughout from his hospital bed! Yes, we did get a hospital bed which has made a huge difference to David being much more comfortable.

He has finally fallen asleep?lets hope he gets a few hours!!

Keep lecturing!!

Meike

[cw1985Participant]

[b]eve[/b] – thanks so much! great advice were going to start writing things down and planning questions more in between appointments.

[b]Dai -[/b] lecture gratefully accepted!!! You have a fantastic way with words i love it! Dad had mantras before he was even diagnosed, being a surfer the phrase " being on the path" he is well known for and its used quite a lot now and he truly believes he is [i]on the path[/i]. He likes to visualize what is going on to so refers to things like "the fight" in his body when pain shifts etc to help him understand and deal with it I guess. Like mum said yesterday was amazing.. a trip out of the house and NOT to hospital.. he also slept like a baby which was lush! but then today was the complete opposite but we all know that this is a roller coaster and thats just how it goes.. one day at a time is what I'm living by at the minute.
[b]
kay[/b] – thanks for stopping by and I'm so sorry to hear Thalidomide didnt work for you, wishing you the best of luck with the Velcade… def keep an eye on the numbness though dads got it on his belly/sides even though all the rant on about at hospital is fingers and toes!

Tom – Thanks so much we def try to keep it one step at a time… but sometimes daddy does like to think he can take on 2 or 3.. men eh!!

Christin x

[eveParticipant]

Hello Meike and Christin

Glad to see your dad at least got out on his good day,Nhs supplied me with wheelchair for Slim,but I bought a light weight one from Halfords much easier getting into car.I know men are not keen on using it,but we would not be with out it now,and Slim has got use to it.yesterday we went out for 5 hours just packed the car with everthing and enjoyed a good day out.Tired but sleeps like a baby with all that fresh air.

Christin,we are all on this journey,Slim,s way of fighting it was all wrong to begin with,he made the mistake of thinking,this is not happening,if I mentioned anything ,he said i was fussing,(nag nag nag )

Out of breath pain,numbness,what do the hospital say,have you phoned them?
I know how hard it is to make that call but just get it checked out,just for your own peace of mind.I cannot tell you how important this is.
please let us know how you get on
best wishers Eve.

[YamyamParticipant]

Hi, my dad was diagnosed on Friday 1st July. He has been asked to take part in the Myeloma XI trial. Not sure what to do. Any thoughts or advice? He's 71 and has been having bone pain for many months now, unfortunately his leg broke (while lifting it up onto the sofa) and that?s when we discovered he had MM. He had been for tests in May (full skeletal x-rays, many blood tests and bone marrow biopsy) however the biopsy was lost and no one picked up the condition of his bones so feel a bit let down by the system at the moment. Now he has the opportunity to be on this trial but unsure.

[tomParticipant]

Hi Yamyam

Sorry to see you had to join but you have come to the correct place, and sorry to read you felt let down by the NHS 🙁 but now they have your Dad on the radar all should flow nice,as for me and only me I would go for anything to help put this dreaded MM on the sidelines until a cure comes along so for me I would do it.

Good Luck in the decision your dad has to make.

Love

Tom "Onwards and Upwards" xx

[tomParticipant]

Hi Christin

Yep I know all about takin three rather than one step:-D but as time went on I knew (nearly as much as Elaine) that I had to take it Easy so am sure your Dad will also get it Lol.

Love from a mere male 😎

Tom "Onwards and Upwards" xxx

[clarabellParticipant]

Hi Christin & Meike,

I just wanted to pop by and wish you and your Dad/Husband strength in the coming months, it sounds like you are a close family and that will get you by. Asking questions as time goes on and when you understand more about MM will come in time, its such a maze of terminoligys(spelling?) that none of us have came across before, this forum is great for getting info and support. My Dad had what he was told was sciatica and only after him being diagnosed with MM and us asking questions did they discover in his CT scan that there was a mass on his hip, he was given radiotherapy and that has helped with the pain.
He is on CTD and due to finish his last cycle in August, he sleeps most of the time and is very weak but having said that his Paraproein levels have came down so we are very positive that he will reach remission and get back to a "normal" life in the coming months. I am keeping everything crossed for you and know how very difficult it is in the beginning, wishing you all well on your journey and will pop by to see how David is progressing, Clara xxxxx

[cw1985Participant]

just a little update on daddy! he was called in for his 3rd MRI yesterday and they have now confirmed that there is vertebrae damage to a few of them, his spinal cord is fine and now they are just deciding whether he will have surgery or radiotherapy. Bit of a blow to dad its taking him a while to process it all but we had good news from the consultant that his para protiens have dropped from 120 to 25 at the start of cycle 3 which he finishes on tues next week, then one more cycle and an assessment. Gota say the team looking after him have been amazing in hospital and the district nursing team at home they have all made sure he has the best care and get things moving very quickly!consultant has mentioned and dropped hints of stem cell so we're guessing that might be the next stage depending on how the velcade turns out. still huge up and down days no thanks to the dex * insert pantomime booos*!! thanks for all your lovely support dad really enjoys me telling him about all you guys and the advise and stories you all have, he finds it hard concentrating on things so wont be joining the forum just yet but maybe some day!
[b]
yamyam[/b] I'm so sorry to hear about ur dads terrible time I really hope things work out for him have you made a decision yet about the trial?

clara – thanks so much! wishing you and ur dad all the best fingers crossed!

[tomParticipant]

Hi christin

Looks like your Dad's team are doing a great Job for your Dad 🙂 as for your Dad not being able to concentrate I was same after some of my first lot of treatment and when i told my Nurse that "The Brain's Gone" she laughed and told me I had Chemo Brain see this Link :::::
http://cancerhelp.cancerresearchuk.org/about-cancer/cancer-questions/chemo-brain

And tell your Dads its great to use gets me away with loads that I have forgot to do he he. and also tell Dad that it Comes Back so no long term using the "Sorry but av got chemo brain" Lol.

All the Best to you and Dad

Love
To "Onwards and Upwards" xxx

[Gill20Participant]

Hi Christin and Meike,

So sorry that your dad and husband has developed this at such a young age but I agree with Dai things are changing all the time with treatments. Although I have only started treatment yesterday I have been screened for the past 17 years and things have changed a lot in this time.

Dai I think I have chemo brain without being on the treatment lol. Seriously though I have had some extra blood tests for this just waiting on the results.

Keep strong and keep positive.

Gill

[susannahParticipant]

Hi Christin and Meike Sorry to hear about your husband/dad, my husband Michael was diagnosed at 45 years of age and he was 60 in April this year

Stay positive
Love
Sue

[tinkerbellParticipant]

Hi
So sorry to hear about your Dad's diagnosis and you can feel lonely especially in Northern Ireland. I'm also in NI and have to say that the treatment that I've had and all the staff I've encountered so far have been wonderful.
Hope you get to enjoy a wee bit of the sun we seem to be having this weekend Pamela xx

[GeoffBrowneParticipant]

Hi Christin,

Just briefly to add to tinkerbell's post, I too am from N Ireland, although I have been living in the Isle of Man for the last 14 years. I know what you mean about feeling isolated! However, this website is a great source of information and support. In particular, I have gained a lot of encouragement from people who have been through the treatment and are enjoying lengthy periods of remission. Keep focusing on the positive!

Like your dad, I have been in the fortunate position of having a really supportive wife and daughter. I don't know if this is the sort of thing that might appeal to you but last year my daughter took part in a sponsored sky-dive for Myeloma UK in Oxfordshire. It was a really great day and a wonderful opportunity for me to meet up with a lot of my friends to watch Claire have a lot of fun while raising money for a cause dear to all our hearts. If that's the sort of thing that might help you to deal with the challenges and anxieties that myeloma has placed in your path, you'll find more details on fund-raising opportunities on this website. Whatever you do, however, I know your dad will gain great deal of support from having such a caring daughter.

Best wishes to you all,

Geoff

[PamHParticipant]

Hi Christin

I stumbled upon this site when my dad was in the early stages of diagosis and I was lost. Your post caught my eye, mainly because your dad is so young. My dad was 82 and your situation really put my own into perspective. My dad was too frail even for the bone marrow test because he had recently had a stroke and was fading fast and yet I was so worried about whether or not he had cancer and what he had ahead of him. Turns out, he only had a couple of weeks. He died on Saturday.

I wanted to come on and wish you and your family the very best of luck with your journey. You seem like an amazingly strong person and I am sure your mum and dad appreciate all the support and love you give them. I hope for the very best outcome for you all.

Take care

Pam x

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