[tanyaParticipant]

Hi there,

I'm here to gain more knowledge and support for both my dad and me. My dad now 76 was admitted to hospital earlier in the new year. He was brought in by ambulance after the results of a routine blood test (to check on prostate in remission) showed dangerously high levels of calcium. He was in for nearly three weeks and has had bone scans, bloods and last week a bone marrow aspiration. His bone scans show he has lytic lesions in his ribs, scapula, spine and pelvis. His calcium is now at normal levels. He has Bence Jones proteins, anaemia and his kidneys aren't functioning at capacity. He is in a lot of pain in his ribs (he describes it as a burning sensation), it seems to alternate betweens sides. This also makes him very breathless. On top of all that he also has angina (which he has lived with since his 50's). So my poor dad is not in great shape 🙁

Tomorrow we go for the results of the bone marrow to see what exactly he is up against. It's tough as he lives 130 miles away, about a 2 hour plus journey. He lives alone. My parents separated when I was ten. And I am his only child. I am a mother to two very young children so it's very hard for me as I am torn. My husband is being brilliant and getting time off to look after the kids so I can stay with dad to go to the big appointments. I guess the saving grace is that my kids aren't in school yet so I can bring them with me if need be (they can stay with my half sister who lives near to my dad).

Anyway, to cut a long story short I just wonder if any one can shed some light on how able a man of his age living alone will be able to manage? They expect it'll be the thalidomide combination of pills. As I say we are not entirely sure what we are up against but i just worry how he'll manage. He seems to have all the major symptoms so surely the prognosis isn't going to be too encouraging? I sound down but just trying to be realistic I guess?

Thanks for taking the time to read this.

Tanya

[clarabellParticipant]

Hi Tanya,

Sorry I am unable to give much advice as I am new also to this site and trying to understand Myeloma, what I will say is there are lots of friendly helpful people who will guide you along. Best Wishes Clara xxx

[brochoParticipant]

Hi Tanya your poor dad is having a hard time and of course you as well When myeloma is first mentioned its always a huge shock and it takes a bit of time before all the information starts to make sense, so take it one day at a time and be wary of searching the internet as information is very often out of date This site is brilliant ,if you have specific questions ring the nurses on the info line , they are so well informed and so helpful There are lots of us on this site to support you both, as patients and carers so please dont be afraid to ask High calcium levels and anaemia are very common in people who are newly diagnosed, it doesnt take long with treatment for them to become more normal. I should imagine one of the first things they will look at for your dad is good pain relief, if its not mentioned tell them how much pain he is in The problem in giving advice is that myeloma is such an individual illness its hard to say what is going on whilst only knowing a little about their symptoms etc. I would imagine your dads treatment would be as an out-patient and it will be a mixture of tablets and perhaps intravenous drugs given on the day ward. There will be a specialist nurse who can tell you exactly what the treatment will be for your dad as well as his doctor The specialist nurse would also be the person I would talk to if you are concerned about your dads ability to cope Dont despair !!I was diagnosed 4 years ago when they discovered a tumour had destroyed 3 vertebrae , I havev extensive bone damage and I was told I was stage four but I am still here !!There has been lots of treatment along the way and its not always easy but its not as bleak as you first think Could your half-sister help with taking your dad to appointments? You have a lot on your plate so try and find time to relax as well Please let us know how your dads getting on best wishes Bridget

[tomParticipant]

Hello Tanya

Sorry to hear about your Dad 🙁

But you know your Dad and am sure you know he will cope with what this darned MM throws at him.

Bridget is correct can your Half sister help out, have you tied the Social Service to see how they can help.

Good Luck and not forgeting yourself as it is too easy to forget about you and your time

Love Tom xxx

[mhnevillParticipant]

Hi Tanya

Welocme to this Web site, sorry it has to be. So sorry about yoour Dad.
My only daughter has two small children and lives in London, I am in Yorkshire. I know that she can't do much apart from keeping in touch and visiting about every couple of months. Fortunately i do have a husband, but he hasn't brilliant health himself. I thnk we have to be willing to have other help which means having other people in the home. Something I think men find more difficult.

I do hope things go better than you hope. Would re-inforce the advice to insist that your Dad gets pain relief that works. Sometimes you have to keep at it.

Do keep in tpuvh with the list.

All best wishes to you and your Dad.

Mavis

[tanyaParticipant]

Thanks everyone for your wishes and support.

I'll update you all on yesterdays events.

We had bloods and then went in to see the consultant. He confirmed MM which we knew but I guess they had to tick all their boxes before committing. They have started him on CTD. It took nearly 3 hours to fill the prescription! It's a lot of pills eh? I helped create a chart with his keyworker/macmillan nurse. She taught him how to inject the clexane (initially he did squirt it all over her :-D). And all in all he seems confident he can stay on top of it all. I have a copy of his schedule so will check with him over the phone.

So I guess we'll see how he responds to it all. To be fair I think once you know what you are doing and have come to terms with it as a patient and a relative you just get on with it and take it day by day. Good days and bad days. I know that when Dad is upbeat it makes me feel better. And I'm sure that works the other way too.

He does seems in less pain thanks to the morphine.

The other thing was my half sister who is actually 18 years older than me. I can't bring myself to ask her to help. She had to deal with her father's dad when he was poorly, our mum's parents (mum didn't/wouldn't do it) and last year she had a terrible time with her dad being poorly (now well), plus ongoing care of her father-in-law following a nasty fall with broken hip. Then he had a stroke and just before Christmas he had to go into a nursing home. She is completely spent in that department. I may call on her to have my kids for the odd afternoon while I go to dads appointments. That way she'll be helping without having to go to another hospital.

Can I ask if those of you with MM always have someone go with you to the hospital? I suppose it's a personal choice but is it sometimes a good thing to go on your own so you can ask questions that you feel you can't ask in front of a loved one? I know my dad doesn't like seeing me upset, or me seeing him upset. Maybe I should just ask him myself?

Tanya
x

[kaychappersParticipant]

Hi Tanya
Sorry to hear about your dad, but now he has had the diagnosis confirmed he can begin the treatment and the journey. I started CTD 12 days ago. I find having someone go with me to the initial appointments helpful just to have someone there to hear things that i may miss. But I think after my first three week appointment I will be going on my own. I was bewildered by the number of tablets and injections, but after taking them for one week I found it all started to fall into place quite easily. I would think that you telephoning your dad just to prompt him would be a good idea. Stick close to the site there is always someone who has either been through it or is going through it who can offer their experience but it is very individual. I also agree with contacting the nurse she is so lovely and knows how to put your mind at rest. All the very best to you and your dad. Love Kay x

[KWilsonParticipant]

Welcome.

I can understand your worries about him being able to take the medication as prescribed – it is a bit of a nightmare to start with.

Alternatively (or as well as the chart) as mentioned above, it may be worth considering asking to see the hospital social worker with a view to a carer calling once a day to supervise the tablets.

My Mum has carers (she has Alzheimer's) and they are not allowed to GIVE the tablets but they are allowed to (they call it) 'prompt' her to take them, so this may prove the solution in your Dad's case – it worth looking into.

Good luck.

xxxxxxxx

[tanyaParticipant]

Thanks for the advice. I think I've underestimated him and he seems to be on top of it all. However, there are side effects. He has three of the big four of thalidomide except dvt (touch wood). So they are seeing him again on Monday. That's the second visit since he started treatment. I can't make that one so he's going on his own with hospital transport. Just as well as my daughter has a tummy bug so wouldn't have been able to see him anyway. Anyway they are also concerned about a falling red blood cell count and platelet count so checking on that too. I guess the worst thing at the moment is his pain. But they just keep telling him to take codeine and morphine to keep that under control. They are trying to get funding for the iv bisphosphorate so that may help with the pain.

Well that's the most recent update, hope everyone is doing ok today?

Tanya

[tomParticipant]

Morning Tanya

Well sounds like your dads doing well 😀 and its amazing where we find the strenth to cope with these things:-S but it always comes to the forefront.

Good Luck on Monday and I hope he gets the OK for the infusion's.

Tom "Onwards and Upwards" xx

[brochoParticipant]

Hi Tanya glad to hear your dad isnt doing too bad Low platelets and blood counts are typical with these drugs and easily remedied so dont worry .I am so shocked they havent given him proper pain relief nobody should have to put up with painWhen I see my doctors pain relief is the first thing they ask about and others have the same treatment so please keep insisting Perhaps your dad is not telling them how bad it is , my mum never tells doctors how bad she feels, could you ring his specialist nurse to discuss it they are usually very good . I hope your daughter feels better soon. there seem to be a lot of tummy bugs around at the moment . love Bridget x

[tanyaParticipant]

Hi Bridget,

Can I ask you what other pain relief might be available? The tablets do control it so I think that's why they haven't offered him anything else. It does come and go too. I'm going to call his Macmillan nurse after his appointment as he just zones out when the Drs talk to him. They use so much jargon, I always stop them and get them to explain what they mean and then repeat it back to them so I know I understand it fully. I then re explain it to dad. However, he may fair better on monday if I'm not there and listen as he'll have to because I won't be there to listen for him.

Thanks for asking after my girl, she's back to her normal chatty self today. Kids are so resilient aren't they?

Tanya

[brochoParticipant]

Hi Tanya its fairly common to have bone pain with myeloma , for this its log term pain relief The bone strengthening infusions such as Parmidronate or Zometa do help pain as well I take slow release morphine tablets twice a day which works well for me .There are also patches which release a controlled dose over 24 or 48 hours .If the pain killers your dad takes are doing the trick you may not need to worry yet . The Macmillan nurse will know all the various pain relievers , they are experts so you will get good advice Hopefully you dad will get on ok Monday as you say he hasnt got you to translate so he will be more aware I am sure Take care love Bridget

[Author]

Posts