This topic contains 18 replies, has 8 voices, and was last updated by 
JandK 10 years, 5 months ago.
Hi everyone, I am new to this site but have been reading posts for a few weeks now trying to gather information that will help me as a carer and you are all seem such friendly and caring people. My husband has been ill all of this year. He is 55 and started with really bad back pain after I passed him a suitcase from the loft. He went to GP who gave him painkillers and a sick note and told him to do a self referral to physio. He then saw physio early January and was given exercises to do which were very painful and one in particular was impossible. This went on for months and he was unable to go to work. He saw GP on several occasions but just kept getting painkillers including morphine for a week. By then the pain was in his ribs as well but neither physio or GP suspected anything, just strained muscles. As well as this my Dad became ill and had pneumonia and kidney failure. He was in intensive care for 4 days but sadly passed away on 25th April. My husband had an MRI scan at the same hospital the day before he died which his physio referred him for at the end of March as things were not improving. He was also having spasms of pain that would make him fall to the floor and he had started using a walking stick. He was unable to sneeze or cough due to the pain and if he ever flinched because something fell out of a cupboard he was in intense pain that did not make sense to me at the time. Two days after the MRI scan we got a call from physio asking him to make an urgent appointment with his GP for blood tests. We saw GP two days later who said that my husband had fractures to his spine and he needed blood tests to confirm whether or not it was mutiple myeloma. After the blood result he then was referred to the haematologist at Royal Oldham Hospital and finally things started to improve after the diagnosis and with the treatment. His pain got a lot more bearable after a couple of months. He was randomised for the Myeloma XI trial and is on the VCD course of treatment which after a few months brought down his paraprotein levels enough for him to be considered for stem cell treatment which hopefully will take place the week before Christmas.
Work have been good and he has managed to work half days the last few months and do some work at home. However, he got a stomach virus early this week and has been ill for the last 3 days but I think he is now improving. Next week he is due for his monthly blood test and Zometa infusion and then having a bone marrow biopsy ready for his appointment at Manchester Royal Infirmary in late November when he will be going to discuss the stem cell transplant again and sign the consent form. All being well his stem cells are due to be removed on 10th December (the day before our 31st wedding anniversary). My husband unfortunately had a phobia about hospitals prior to his illness but has quickly got over this as he has had no choice. Our haematologist is wonderful and we even have a laugh with him at each appointment and we always come out feeling better than when we went it. Dr Gibbs also seems very nice at MRI as well as all the nursing staff at both hospitals. His first 6 months of chemo has come to an end this week and he says he now feels more scared as he knows what is to come next. I doubt he will ever visit this site as I think he will be very anxious if he reads something bad. I sometimes print off things that I think will make him more positive and it is lovely to see that a lot of you have gone through all this and are now going back to normal lives again in remission and that's obviously what I want for him although I realize things will never be the same again. I am glad our daughters are grown up. It must be so hard having to cope with this and also have young children. Our daughters are 26 and 23 and are very supportive to us and also to my mother who has been grieving terrible this year since the loss of my dad. 2013 has not been a good year for us – roll on 2014. Best wishes to everyone else going through this illness. Angela
hi Angela
I'm so sorry that you have had such a hard year. Getting over the death of a parent is difficult enough without having to cope with your husbands diagnoses at the same time. my heart goes out to you all. I am new to the forum too and like you, read everyone's posts for a long time before joining. My husband had his stem cell transplant January 2011 and although he felt rough at times and was as bald as a coot, he coped well with it all and as many have said on here the SCT is doable. i'm sure your husband will cope well, although Christmas will be different this year for you all. much blessings to you both on the road to remission and hoping 2014 is a better year for your family. if you have any questions your in the right place to ask.
much love Rosie
Hi there, hope you don't mind too much having to join us, it's definately not the best place to be but now you're here, hopefully you can get something out of it.
Now, your husband and I are at about the same place. I have just finished Chemo and have a bone biopsy a week on Thursday with a view to progressing to Stemcell harvest before the year is out. Although diagnosis was rapid once in Germany, I was offered a full medical inc. full blood test by my GP here which flagged up MM, I had an adverse reaction to PAD and then to Revlimid which led to severe problems with my liver. Thankfully no such reaction to Velcade, just tingling and pain in my feet.
So we are running almost in parallel, your husband and I. We do have a daughter who is 6 and it is hard but Myoloma UK have produced a wonderful childrens book which she read today explaining what Myeloma is and how it affects people. A bit to young in style of writing for your daughters I think. Anyway, as with you this year has been so bad for us, after we had such high hopes with a move here from the UK. Still 2014 is a new year, let's see if both of us can start with some positive news on the treatment.
Hi Rosie, nice to hear from you. I hope your husband is doing well and like you say if we have any questions it will be easy to get an answer from somebody who has already gone through this. I think Graham's stomach bug is going now as he ate ok yesterday but his taste buds are not the same and he is no longer enjoying bacon and eggs. In the last 6 months though he has been mad for chocolate and sweets and last night was craving a chocolate pudding at 10.30 pm. My problem is that if I get sweet stuff in for him I end up eating it.
Christmas will come and go this year and if Graham is in for his SCT over this period then I will have more days off work to visit him. I have saved most of my annual leave for when he is in hospital but the myeloma nurse said it might be best to save these days until he is home so I will see how things go and maybe do half days at work so I can have long visits at hospital and also have time for when he comes home. There is a lot to plan and I will be glad to post on here that he has had his stem cell transplant and he is recovering well. Best wishes, Angela x
Hi DickB, not sure if I have already responded to your post but tried to respond to Rosie separately to you. Thanks for for your posting. I will post on here how Graham's plans go – I think we will find out on 27th at MRI when the date for SCT will be but I realize a lot of planning goes into this and your fitness for it has to be established first with various tests for heart and lungs etc. Let's hope you are both in remission in early January and are then in a long remission just in time for the cure which I think is just around the corner! Once in remission and feeling fitter I am going to encourage Graham to start doing regular exercise which is something he has not really done for the last 20 years or so. We have already been told that walking is really good for his back muscles to support his spine so it can only be good. Best wishes to you and your family and hope all goes smoothly for you at the next stage of your treatment. Angela x
Hi Angela,
I believe you need to encourage Graham to do some exercise now, it doesn't have to be anything strenuous but just little things help. You didn't mention how bad his back is now but if he's capable of doing some walking now than all the better. I am not a fitness fanatic, my job kept me very fit and strong which I see as a blessing because I do not have such severe bone damage and my wife 'encourages' me to do a fitness DVD with her and I walk everywhere, use my push bike when I can and we are fortumate in that we live on the edge of a national park.
We do believe that level of fitness prior to treatment has a bearing on the recovery time. My wife is my PTI, she persuaded me to walk 3 km on the Easter Friday, 6km on the Saturday and 10km on the Easter Monday. I had literally come out of hospital after diagnosis, still recovering from pneumonia and a bout of Diarrhea. So if Graham is prepared to put up with a bit of discomfort then he will reap the benefits.
I have a meeting with the hospital on Tuesday and the Bone biopsy next week so I will keep you informed of my progress. We'll see who makes it to Stemcell first.
Hi Angela and Graham
A warm welcome to you both on this cold windy Sunday 😀 also my condolences on the loss of your Father.
Now this road trip you are going to have is as we/I have said is a doable but it has its scary moments and all treatments dont suit everyone so its a case of trying this then trying that top find what works best for Graham.
I am like DickB your energy levels will drop before and after SCT but walking is good for you, the length will vary according to Grahams fitness levels, I also had a hard physical job prior to diagnosis, still at same company and am pleased to say I am doing lighter work than I did pre MM.
Good Luck on this road to recovery for you all, its uphill at times but is a doable.
Tom Onwards and Upwards x
hi Angela
glad Graham is feeling a little better. He sounds like my husband with his sweet tooth 😀 Hope you can sort out things at work before his transplant, i am a stay at home mum so didn't have that dilemma during Chris SCT. Chris is on revlimid. cyclophosphamide and prednisolone which seems to be keeping his light chains in check at the moment.
all the best
Rosie x
Hi Angela and graham,
My partner Colin was diagnosed in October 2011, and like graham had terrible back pain. Thankfully Colin's doctor was on the ball as he'd had a stint in oncology and had an inkling that something wasn't right. Within a month we had been referred to a haematologist and was on treatment by the end of October 2011.
It is a hard road, and as the supporter it was very difficult at times, however we got through it and Colin had an sct in November 2012, so a year ago about now and he is in complete remission, so fingers crossed! It isn't easy as the treatment can make you feel quite poorly, understatement! But it did reduce the pps. Colin was on myeloma 11 trial taking revlimid, cyclophosmahide and dexamethasone. The worst with the dex was the emotional roller coaster, up at night and sometimes very emotional. It was hard but it is doable.
This forum is a godsend and I found it so helpful when Colin was going through sct.
Good luck to you both with the treatment
Vicki and Colin x
Dick B Good luck next week 🙂 i so hope that all goes well for you San x
Thanks everyone for all your posts. Graham has almost recovered now from his stomach bug and feeling a lot better. He went for his monthly Zometa today and blood test and paraprotein levels that we got today from October were still the same as September (at 2) but good enough for SCT so that's good. Tomorrow he has his bone marrow biopsy. When he goes to MRI on 27th November they will then have the result of the biopsy. Graham will be glad when tomorrow is over and then no appointments until 27th November. It will seem really strange on Saturday as he no longer has to start his next month of chemo. It's also good at the moment as his birthday is on 23rd Nov so intending to have a good night out and a few drinks that night. I worked it out months ago that his chemo would hopefully be over by his birthday so that was something for him to look forward to. DickB – don't forget to update us when you get a date for SCT and we will do the same. I asked Graham today if he would consider doing some light exercise routines as I have a few old exercise videos that we could both exercise to but the answer was no! It's a shame that the weather is wet and cold at the moment as I don't think he will do as many walks round the block as he has been doing and we both know this was helping him. His back is getting less painful as the months go by but he does not walk as upright as he did and he has lost a couple of inches in height.
Best wishes to DickB, Tom, Rosie, Vicki and Colin and also Lolly and everyone else going through all the stages of this treatment.
Angela and Graham x 🙂
Hi Angela
My husband was diagnosed on Saturday 12th October 25 days ago, a very similar story to yourself it's been a terrible time… I've just woke up .. well not really woke up I didn't sleep again …I am so glad I have found this because I felt so alone as Keith has just started on the steroids and is very emotional so reading this thread has already helped me …
I started a blog because I found I was living each day over and over with all the phone calls from concerned family and friends … I've tried to make it humorous to keep everyone's spirits up but have to admit yesterday was a bad one I presume I have lots more bad ones to come …Keith is brave but he had just retired after 40 years as a GP and I think he has quite a negative view of his future so my main role is keeping things as positive as possible …
Start at the bottom of the blog 'the history' our stories sound very familiar my Dad died in February this year and my Mum has had to be moved into care, other than your 31 year marriage we only got married 7 weeks ago after 8 years together .. Keith is older than me he is 65 and I am 52 x
Hello Batman, i am so sorry to hear your story but pleased that you have found this site:-) as you will learn lots and get support from here from a sufferer and carer perspective, our myeloma nurses [myeloma uk] are smashing and so knowledgeable too, send your husband my good wishes and i hope that all goes well with his treatment, San x
Thanks for that my name is Jo I cannot find a way to change it from batman
Jo
Are you sure how about Batwoman Jo:-D love San x ps at least you got your photo on here i haven't worked that one out yet ha!
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