[robinspringerParticipant]

Hi all,

I hope you don't mind me sending a message to the site.. 2 weeks ago my father was hospitalised with suspected Renal failure.. having spent the last 10 years of this life in and out of hospitals through 4 heart attacks, 8 strokes and now this… Until now, no real diagnosis and so many suggestions of internal bleed etc!!! until a doctor the sunday before last took one look at him and requested a Bone Marrow biopsy, by Monday lunchtime we'd had the news he had Myeloma.. a devastating blow having been given the all clear two weeks for suspected Bowl Cancer. Even after the news his focus was purely on " When am I getting out of here" Now a week and a half in hospital they are battling to get the level and mixture of drugs right, last friday evening was the first of Chemo drugs and a session that included a total of 43 tablets in the space of an hour and a half. The main challenge they have currently is some form of hemeraging thats going on and each night he loses a good amount of blood! It's a frightening and testing time for both himself and us and so so difficult to watch.. The team at the hospital have been great but I can't help but wonder if he's been ill for so long, was it this all the way along and the problems he has had were simply the result of this….
I guess I've used this opportunity to vent! but I truly want to understand it, know the real effects it's having and what my dad is up against assuming they can level him out at this stage! Would love to hear from people that may have had a trying time leading up to being diagnosed, although I fully understand that it's not the normal type of question people ask..
Look forward to hopefully hearing from some of you, help, advice and knowledge..
thanks

[tomParticipant]

Hi Robin

Well your Dad (Name?) has had it rough Bless him that a hard road he has traveled in the last ten years.

Its a Scary road and its a bumpy road to remission but it is a doable road.

Good Luck to you all on the road to remission.

Tom Onwards and Upwards x

Ps where is Dad having his treatment and how old is Dad ? as am sure some on here might be able to give a heads up re hospital x

[john62Participant]

Hi robin
sorry to hear your bad news
I WAS diagnosed last easter after back and to from doctors for 4 months we just go on and on my pp was 70 its a long road and we will get there there is a sunny day around the corner stay strong
john xxxx love you all

[eveParticipant]

Hi Robin

Myeloma is a cancer with no cure,but saying that your dad can have a lot of time in remission ,so all though it sounds bad,the more you learn the better you will understand it.Myeloma is such an individual cancer,and people react differently to treatment,one thing you will find on here is people who have travelled this path before your dad,many with careers in tow,so ask anything you want and learn as much as you can,it will take time to realise it can be done and your dad can get past the stage of thinking he is not going to get better.

One persons myeloma can not be judged by another persons Myeloma ,it is such an individual Illness,although treatment is the same for everyone,it helps if a person is positive.

My husband started his journey 2 years ago,he is now in remission after going on the MX11 trials and having SCT,he is one of many,we are making the best of the future that has been given to us.

It's not all doom and gloom,although 45 tablets a day is normal for awhile,make a chart when he comes home makes it easier to follow,is your dad a chatter box on the Dex,??. It is all doable asTom says ,but he will need a lot of surpport ,some people are years and years in to remission,the only thing you need to worry about is getting Dad in the right frame of mind.Eve

[teds31Participant]

Sorry to hear your news Robin but there are a lot of people on this site that can help as I personally know, keep reading all the posts and the leaflets that are available on this site and ask questions, all the best to you both. Ted

[PerkymiteParticipant]

Hi Robin, I cannot come anywhere near your Dad?s terrible time. However, I was first diagnosed in July 2009. I broke my neck getting out of bed, luckily the Hospital was real switched on and after having surgery to put in internal scaffolding, to hold my head up, I am right as rain, as they say. (Never really understood that saying but there you go).

The Consultant came around whilst I was in hospital to inform me of the bad news. Interesting she said I had had Myeloma for at least 3 years. During those 3 years I had had several major problems, including a DVT with Pulmonary Embolism in my lungs. But it was the persistent urinary infections I had been getting for some time that was apparently the real give away coupled with anaemia.

Hope this is of some help

Kindest regards ? vasbyte

David

[robinspringerParticipant]

thankyou all the the messages!
The latest update for us seems to be a "plasma Wash out" whatever that is… currently they are now struggling to get his blood to clot, all normal cotting agents aren't working. they've sent some blood off for analysis at a centre.
He's currently in Brighton Hospital and although the team have been fantastic support for him I know he's struggling a bit with the food etc.. we've started taking in his meals.
the Consultants have now decided to go back to square one and review ALL his history to try and understand if something else has been missed along the way.

thanks again for the support!

[robinspringerParticipant]

BTW.. his name is Jim! and he's 66..

[mhnevillParticipant]

Hi Robin

Sorry you have had to join us on Jim's behalf and that he has had such a trying time. The important thing is that you now have a right diagnosis. The treatment isn't fun, but many of us are in remission because of it. – myself following an op to remove a tumour from my back, then radiotherapy followed, quite a bit later by CDT for six months.

All best wishes to all the family at this difficult time.

Mavis

[tomParticipant]

Hi Robin and Jim

Looks like his Team are on the ball, am sure it will help going back into Jim's History as he has had a fair few problems for some time, he will soon be sorted its just takes a bit of time.
Give my Regards to Jim.

Tom Onwards and upwards x

[jmsmythParticipant]

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