[salsa27Participant]

Hi everyone,

My name is Sally and my fabulous Dad (64 years)has just received the news yesterday that his MGUS(diagnosed 2 years ago) has developed into MM. To be fair we were expecting it as his paraprotein had tripled over 6 months and he was experiencing back pain, fatigue and just recently tiredness and loss of appetite. I am in the fortunate/unfortunate position of working with stem cell patients during harvest and reinfusion so in a way see and know too much! Can't deny though it's still a shock to the system. He begins treatment next week. Our situation is a bit unusual as my Dad lives with my Mum who is an undiagnosed/untreated mental illness patient (she refuses to accept she is unwell despite our attempts to help her). Their relationship is very difficult and my main worry is his care for the future. Can anyone give me indications of what we may expect in the coming months so that I can attempt to be there for him to help. Mum's care of him is abrupt and at times unkind, she lacks any compassion with not so much a blink of the eyelid at the news of him having MM. My concern is his wellbeing during this difficult time. I have offered for him to stay with me and my family but he seems reluctant to leave my mum behind and of course likes his own space. I want to try and do what I can for him as he's been a wonderful Dad to me and a fab Granddad to my son. Any info would be much appreciated.

Good luck and 🙂 to everyone affected by this naughty illness.

Sally xxx

[HelenParticipant]

Sally what a predicament- you need to ask all the questions, take notes or record clinic conversations to find out what is the plan, your mum will presumably continue to do her own thing and you dad probably won't want to let go either and normal routine, however odd might be best only time will tell, perhaps you could speak to a MH nurse via your GP.
Keep posting
Helen

[PerkymiteParticipant]

Hi Sally, I am sorry to hear about your Dad and the problems in the family.

You give very little information about your Dad other than he has now been diagnosed with full blown MM from MGUS. Have they already collected Stem Cells from him during his MGUS period?

I was diagnosed with MM in 09 aged 66. I find it difficult to imagine how I would have coped without the support of my wife but when I think about it I did not need all day all night treatment and therefore it would be possible for you to perhaps help with his treatment as you cannot rely on your mother.

Can I suggest you attend all of his consultations from now on, if you are not already, and make sure you make notes of what is said.

Perhaps you could come back when you know a little more and we could then set out the framework for you of ?standard? treatment that might give you some ideas.

Kindest regards ? vasbyte

David

[BADGERParticipant]

Hello Sally

so sorry to hear about your dad and your mum it must be difficult for you to see the people you love suffering in one way or another if mum is mentally ill there is not much can be done for her until it is recognised
as for your dad the main problem with the treatment can be for some people extreme tiredness it seems to take all your energy so he will need some looking after if you can arrange it you might be able to get some help for him from McMillan they can certainly help with control of pain several members on this site have had help from them in this regard
Good Luck for you and your dad
Regards JO

[salsa27Participant]

Hi everyone,

Dad had a BM biopsy and blood tests back in 2009 which identified MGUS and has been monitored since. They seemed to think it was a case of sit back and wait and see what happened and hence we're now at a point where he has developed MM. This was diagnosed with another BM biopsy, bone scans and more blood tests last week. He is going to be part of the XI myeloma trial and the details of this are being discussed next week with his nurse.
This will eventually lead to the Stem Cell Transplant if he responds well. I have been attending pretty much all of dad's appointments with him. Mum went once and just argued with and embarressed my dad and the doctor the whole time hence why I tend to go now!
We've tried all sorts of intervention with regards to my mum's illness and to be blunt we've given up as the help is dire unless she wants it. My problem is that she always seems to be the main focus and it's not about her I want to make sure he's ok.
Dad is very tired at points in the day. I work full time doing random shifts and am a mum. Fortunately I work at the hospital where he is being treated so my access to him is easy when in hospital but obviously not so easy when he's home. What can I do to make a difference to him, to help ease symptoms etc? That is the sort of information I would like if anyone has any pearls of wisdom for me 🙂 This is my chance to give back to him and I want to make sure i'm not crowding him or doing too little.
I'm definitely going to embrace the help of the Macmillan nurses once we make contact.
Many thanks for your kind words.

Sally x

[eveParticipant]

Hi Sally
I am a carer for my husband,If I am honest as much as my husband use to be a very capable man,this mm has taken an awful lot from him,and he would be the first to admit ,he does not know what he would have done without me,saying that my husband had septic pneumonia and ended up 22 days in hospital,he has always been a fit man,ex royal marine.lost 4 stone and 5inches in height.66 years of age.Bone tumour and lesions.!!!

Some people sail through this have no problems,go on to sct and have good remission and go back to work.no bone problems,when you have your fathers results,you should know ,roughly what to expect!!!!
Lots of people manage living on there own,but having a person with mental health issues,who is not sympathetic,I think needs to be at least assessed.

My mother in law was for many years,needing help,thought we were plotting against her,rude abusive,would not be helped,you just end up hating them in the end,finally lost the plot,admitted to MHU for assessment,found out we could have had her sectioned earlier,came under the court of protection,and we moved her into a home.was told the condition started in her sixties miner strokes,damaging brain.took 15 years.

No pearls of wisdom,but I know with hindsights,we would never go through that again.
I hope you can get your dad to talk to her doctor,he is the one to help you.
kind regards Eve

[salsa27Participant]

Thanks Eve,
I will definitely look into this issue further to ensure Dad is OK. I suspect that he will need a fair amount of care simply because he struggles now being arthritic, diabetic, suffering with COPD and atrial fibrillation! Just getting socks on and in and out of the bath have become an issue recently but mum will not help him.
I'll keep in touch with hopefully some better news soon.
Thanks again Sally x

[Gill20Participant]

Hi Sally,

Sorry to hear about your dad, hopefully you can help him get through this. I hope my own experience can help you, I had MGUS for a long time before needing treatment which I started 6 weeks ago. I am 60 and work full time which I have continued to do as I have my own business. I have found that since starting treatment I get good days and bad days my bad days seem to be after chemo so Sat Sun and Mon are bad days for me I feel sick and tired but by Tuesday I am OK and on Wednesday, thursday and Friday I fel better than I have felt for years. I find it relatively easy to cope and carry on as normal but as I am only just finishing my second cycle things could change. My only problem at the moment is that my ankles are swelling up, but I will discuss this on Friday when I see the consultant.

I am fortunate as my husband is very supportive if a little over protective and my son lives at home and is a wonderful help too so I have lots of support if I need it.

I think the main problem will be his tiredness so just making sure he is comfortable and can rest when he wants to may be all you need to do at this time. If your dad is like me and feels worse at weekends he may not want people visiting. It is a question of seeing how the treatment affects him. They say to write a diary to see if there is a pattern it makes it easier to plan things.

I agree with Eve you really need to get your mum assessed and as you say he is reluctant to leave her she is after all his wife and he will remember her as she was. It may be that she needs medication or some sort of therapy which could help them both.

I hope things go well for your dad. It is nice that you are thinking about him.

Gill

[CarolBradley1Participant]

Hi Sally
As usual all the lovely people on this site have given you some excellent advice but I just wanted to say a quick hello. All I can say is that I thought I appreciated my husband before I started treatment last year but having got through the transplant and a slow recovery I have felt so sad for anyone who has no one to support them through this awful time. – if it wern´t for you your dad would be in an even worse state as your mum is making things more difficult for him.
Your a lovely caring daughter and you have probably already realised that to help your dad your going to have to bite the bullet and get some professional intervension in order to ensure your dad´s care. There may be times when your dad simply isn´t well enough to care for himself and you simply can´t do everything for everyone so please do get dad`s GP, Macmillan, his specialist all involved and aware of the situation so they can formulate a plan to help you and your dad – you both deserve and need it.

So sorry that you and your family are having such a difficult time.
Best Wishes
Love Carol xxx

[mhnevillParticipant]

Dear Sally

Just wanted to add my best wishes to you and your father at this difficult time. So sorry your Dad is having it so difficult. I am the same age as him, and also have arthritis, and can't imagine how I would manage without my husband's support.

Do take care of yourself too.

Mavis

[tomParticipant]

Hi Sally

Sorry am late (but thats just me) and also sorry to hear about your Dad, hope things improve soon.

Love
Tom "Onwards and Upwards"

[salsa27Participant]

Hi everyone,
Finally had our visit at the hospital on monday and Dad has had an infusion to bring down his calcium levels which all went fine. This was followed by a trip to see the Macmillan nurses for a cuppa and chat while we waited for his appointmet with the docs about his upcoming treatment. The ladies there were lovely and have suggested both Dad and I pop in if we ever need to over the coming days, months and years.
The issues Dad has with Mum were discussed but they seemed to think there wasn't much Dad could do apart from seek advice from a solicitor. He's not too keen as he's so tired and in pain most days which is totally understandable. We've had a chat and I approached social services on his behalf to see if they can get involved and keep an eye on things. They seemed very helpful and are arranging an assessment soon. Just hope it's not another dead end for him.
Spoke to the doc and Dad has signed up for the Myeloma XI trial and is hopefully beginning treatment next wednesday. Not sure what path he's on yet until the day arrives.
Dad's spending lots of time napping and is having intermittent nights of sleep due to the pain. Just hoping that his treatment sorts this out for him.
To add to his pain Dad had to have his last two teeth out today as they are rotting and to reduce the risk of infection before treatment begins.
It never rains eh!!
Well fingers crossed all goes well next week.
Take care everyone
Sally xxx

[brochoParticipant]

Hi Sally I am glad to hear your dad has begun treatment , fingers crossed he will begin to feel a bit better soon . He will probably still be tired when he is on treatment but he will learn to pace himself . Great that you have been in contact with social services and I am sure they will be a great help The Macmillan nurses are brilliant and very knowledgeable too for all those questions you forget to ask the doctor about Their main area of expertise is pain relief which will be a big help for your dad . Good luck for next week love Bridget

[annParticipant]

We seem to share a number of things! In my case it is my husband who is the patient. He was diagnosed with SMM in '09 which eventually became active myeloma in March '11 he then started treatment and finished 6 months of CDT. He coped really well most of the time just 2 lots of infection earlier on. After we got our heads round the enormous number of tablets he took charge of his own treatment. I hope your Dad reacts in a similar way but it helps to have sympathetic support available when they need it and I'm sure you will be there to do that. I too have problems with a family member with personality diffs. in this case my mother who is 93 and can be very nasty and at times abusive. I have also tried to get her assessed and it was finally recognised that there were probs after she had to be hospitalised after a fall earlier on this year. Her depression was noted but not much else was done after she came out of hospital and settled in back in her sheltered housing. Just hope your Dad can get the support he needs when he needs it from you or Macmillen and that your Mum doesn't cause too much stress.

[gina45Participant]

Sally i am glad your dad is going to be starting treatment, its always such a relief as you just want them to be better again.
Please let us know how everything goes and keep us posted.
Take care
Gina xx

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