Multiple Myeloma

This is following on from my post in the ' Your Introductions!' section here

We are still reeling from my husband's recent diagnosis of mulitple myeloma. He has always been a fit person who does lots of exercise. We went on holiday to Greece for a month from mid-August with the intention of hopefully helping our daughter recover from the PTSD she has been suffering from since experiencing a taumatic incident in January 2015. My husband seemed fine until about a week before we returned home, when he suddenly developed double vision. Once home, we went to the eye hospital where they thought he had suffered a minor stroke. At the stroke clinic though, they scanned his head and found a tumour at the back of his head, just below his brain. It was the last thing we were expecting!

There followed a long process of scans and tests and after two months we have recently received a final diagnosis. He has multiple myeloma and is starting a 40-week course of chemo tomorrow. Next week is going to be a particularly hard week, as he is also having radiotherapy every day to try to shrink the tumour in his head. Next Wednesday, we have to go to one hospital (Worthing) for his chemo in the morning and then travel aprox 15 miles to Brighton for radiotherapy. (We live roughly mid-way between the two)

I really feel I am struggling to cope right now. To be honest, I was strugglig a bit even before this happened as was beginning to despair that my daughter was not making very much progress in getting back to a normal life. Now this latest disaster has made everything so much worse!

My husband is not allowed to drive because of the double vision and the tumour is also making him really deaf. All the things we used to do together which helped to cheer me up have had to stop.

I was supposed to be starting to help out at a computer group after returning from holiday (mainly for old people who are not used to computers). My life has been a bit aimless recently and this was the first thing for literally years that I was actually looking forward to. My husband is only going to have to go to the hospital once a week for chemo (the rest of the time he will just take pills at home). Guess what? The weekly visits are going to be on a Wednesday, at exactly the same time as the computer group! I know I shouldn't even think about myself right now, but I cannot help feeling so incredibly disappointed!

Gotta go now, as my husband wants me to go out with him on the bus to the cafe at our local M&S. He is still able to go out on the bus at the moment (the eye hospital put a prism on one of the lenses of his glasses and that helps him to see reasonably okay straight ahead, although he still sees double when looking to either side.

Will be back another time.

Re: Multiple Myeloma

So sorry you are having such difficulties and I hope that your husband starts to get better again.

Re: Multiple Myeloma

My heart goes out to you...this is not what you signed up for but it's what you're now saddled with.

It's the same story for any carer in any family...your life goes on hold (to a greater or lesser extent) and it's a bit like it was when your children were small; you live your life on the fringes of theirs.

Now you can do two things here, and much depends on your personality and resolve and level of dedication and all those things, because it's totally personal and no two carers are the same.

1. You say goodbye to your computer group which you were so looking forward to.
At the same time you ask them there, and ask around, if there is anything similar in your area on a different day.

2. You make other arrangements for your husband's chemo visits.
You find friend or find a volunteer or pay a carer to take him each week and bring him home again.

Much depends on his dependency upon you and whether or not he will actually need you there, or whether your role would be just as the driver.
If the latter then it would be so good for you to have another interest to chat about and take both your minds off his condition.

Good luck x

Re: Multiple Myeloma

I agree with Ruthio post ,try and fix something up for another Computor day, its important that you have something else going on in Your life ,otherwise you will soon feel like you dont matter .

Re: Multiple Myeloma

Hi, Channeal. This is a good place to visit to talk out your situation. I know this is overwhelming. My father-in-law also had Multiple Myeloma and responded very well to the treatment. While the treatments left him initially drained for a while. He was able to get back into shape with physical therapy, exercise, and a recommended diet that gave him ten more years with happy and active quality of life. The treatments are getting better, and life expectancies are much, much longer these days.

I agree completely with Ruthio. You have a lot going on, and you sound very wise in trying to manage a way to keep teaching the computer group. These classes seem like they will be a useful, distracting, and enjoyable outlet while you manage your family's health. Can you get the treatment days changed? My daughter's school work necessitated changing her chemo days, and while the hospital balked, they finally acquiesced. The worst they can say is no.

You can only do so much. The one thing you will learn in managing all of this is that some things just aren't going to get done for a while - and that's ok. The list of things I put on the back burner when my daughter was ill became pages long, but it is better for you to stay healthy and upbeat and let a few things slide than to wear yourself down trying to keep up with an impossible list.

I am also terribly sorry about your daughter. You all sound like you already have a plan in place for her and I wish her well. Sticking with her treatment plan and support will be more important than every.

You can do this, Channeal. Take it one day at a time, accept help when it is offered (this was tough for me), and look for peace and happiness wherever you can find it.

Re: Multiple Myeloma

My Mum also had M.M. She was about 82 when she was diagnosed.
She had no tumours though, as we were told it was a cancer of the blood and bone marrow. This is why she there was no lumps or anything that could be removed. They diagnosed hers by taking samples of bone marrow.

Mum refused all chemo.
I took her to all her hospital appointments and went in with her as she couldn't hear very well what the Doc was saying to her.
She had blood tests every time to check the blood platelets.
She was told to watch for any unusual bleeding from nose, mouth, or anywhere else.

Because this cancer is all in the blood, she eventually accepted the offer of a blood transfusion. These got more and more frequent as time went on. They used to perk her up for a while at first with the new blood, but as times went on, I could tell in many ways that the transfusions weren't lasting anywhere as long, and were needed much more frequently.

Because of her age, it was harder to tell what was due to natural old age deterioration, and what was due to the Myeloma.

Mum survived for 7 years with her condition and died at 89 about 3 years ago. Christmas is still not the same without her, and I still miss her frequently.

Be brave Channeal, and try not to despair too much at this stage.
Your hubby is younger and fitter than my Mum was, and is accepting the treatment offered. He stands a much better chance than my poor old Mum did.

You need to try and look after yourself as well,you have such a lot on your plate.
Rest when you can, and try to do some things that make you happy and relaxed.
I wish you well, and you always have us here to talk to.

Re: Multiple Myeloma

Thanks very much for your nice message, Mups. I am actively trying to get some counselling, although that is not proving too easy at the moment!

Wow! Your mum survived for 7 years with myeloma without having chemo? That's amazing! They told us that the medium survival time on treatment is around 5 years, although the doctor also said that he had one particular patient who survived for 20 years. I personally know somebody with myeloma who has had it for around 7 years and he is incredible, really fit and well. Having said that, his myeloma has returned twice and each time he has had more chemo. The doctor did tell us that they are introducing more cancer drugs all the time and that this is especially true with myeloma (though he did add the rider 'that is if the NHS can fund them')! We have to try to keep positive on that front.

Just one thing with regard to the tumour my husband has got. Yes, myeloma is a type of blood cancer, related to the plasma cells. My husband's tumour is something called a plasmacytoma, which is a tumour of the plasma cells. You can sometimes get a plasmacytoma without having myeloma, although it often progresses to myeloma later on. These tumours are treated with radiotherapy. My husband is particularly unfortunate, as his plasmacytoma is in the back of his head, immediately below the brain. His first symptom was when he developed double vision (about a week before we were due to return from a holiday in Greece ), because the tumour is pressing on the nerves going to the eye. For the same reason, his hearing is affected and also his speech is sometimes slightly affected too. With regard to his hearing loss, he had been complaining of being deaf for a long time but ENT were not able to find a reason for his problems. We are really hoping that the radiotherapy next week reduces the tumour enough to stop the double vision, as he is unable to drive at the moment (I can't drive myself due to a disability I have had from birth). Luckily our daughter is now driving us to the hospital appointments, although she had previously only driven on about three or four occasions since her PTSD started back in January 2015.

Thanks again.

Re: Multiple Myeloma

You are very welcome Channeal, and I wish you good luck with everything.
Look after yourself.

Re: Multiple Myeloma

Thanks very much for your message, Surfermom.

I haven't done any more about the computer sessions at the moment, want to get the week of radiotherapy over with first. Am not sure my husband would want to change his chemo day, especially not now that he has had his first one. We will see how we go. I think they do have the computer sessions on more than one day, although luck would have it that the one where they really needed help was the Wednesday afternoon one.

With regard to our daughter, the real problem for me has been the fact that she had stubbornly refused all help and has not had any counselling. Although ironically, just before my husband's problems started, she was actually thinking of having a bit of counselling. All that is on hold now. We are not the luckiest of families, one way or another.

Thanks again.