Thanks for your reply, Eve,
The dex waa given last year before M was diagnosed. He had spinal cord compression and it was the first thing the spinal surgeons started him on before his first major surgery. The plasmacytoma that had caused the compression and destruction of a vertebra in his neck wasn’t diagnosed till he was in hospital with the psychosis. initial biopsy results suggested we might be lookimg at spinal TB. Apparently dex is often given with spinal cord compression. We had no idea it had caused the psychosis till he’d been in hospital about a week. You can imagine that my mind was going off in all directions: brain tumour, cerebral haemorrhage … all sorts!
At that stage, nearly a year ago, we hadn’t even heard of myeloma and had no idea about any of the drugs. Thanks to this site and helpful advice, I’m a lot better informed now and ask questions about everything. Comes in handy when he’s nearly been given the wrong chemo drugs! The myeloma was only diagnosed this January, although we were told last May that there was a high chance that it would develop.
It’s reassuring to know that the normal dex isn’t so high, though.
I hope Slim is coping with the Velcade. M seems to tolerate it pretty well, but that’s no good if we find out tomorrow that it’s not making much different to the PP!
Best wishes,
Sarah
Wishing you all the best for your SCT, John.
I hope all goes as well as possible and that you can look beyond it to a time of recovery when there are nice long days and better weather.
Best wishes,
Sarah
Hi Dick,
My husband has been awarded payments under the PIP. We think he had a relatively easy time of it compared with other stories we have heard. One thing I would strongly recommend is talking it through, or even maybe completing it, with a Macmillan benefits advisor – you can speak to them on the phone, it doesn’t have to be in person. If you have been claiming some other benefits there is a fast-track with the PIP application. We were also told that my husband would not need to have an assessment and we did make it clear on the form that it would be difficult for him to visit an office or clinic if it involved walking for any distance, climbing stairs or sitting for any length of time, owing to his spinal damage and current fracture.
We sent off the form at the beginning of January and got the notice of entitlements, plus back-payments, about a month later. You are supposed to answer the questions according to how you are at the time you are filling in the form, and M was in hospital at the time, feeling pretty rough and in a lot of pain. I don’t know how much difference that made, as it also depends on the information obtained from your GP or consultant.
M is now receiving the higher level payments for daily living and for mobility and the letter says he won’t be assessed again until 2017.
My sister is a Macmillan nurse in another part of the country and she has some terrible stories of people who are in a much worse situation than we are and have had to wait for ages for anything at all to happen, so I do wonder if there might be some variation according to which office processes the forms.
Final tip – make sure you allow plenty of time to fill in the form (which took a few weeks to arrive, but money was backdated to the time M enquired initially). It’s long and mostly requires you to write a lot of detail – not just tick boxes.
Good luck!
Sarah
Bit of an “oops” for us too this weekend. M takes his temperature every evening and records it in his TEAMM trial book. Yesterday evening it was 37.6. An hour later it was 37.7. Hospital instructions are to phone if it is over 37.5, so we did, and M was booked in for the night. They’ve given him intravenous antibiotics and antivirals and he’s in there tonight too, even though his temperature is now normal. He’s not a happy boy as the haematology/oncology ward is full and he’s on a general medical ward: no reclining chairs, Dyson fans or special menu there!
It’s reassuring that they don’t take any chances, but at the same time it’s a bit frustrating.
Maureen: lol!
Andy – try not to have an oops no. 3!
Sarah
Hello Frances,
That sounds horrible. I would definitely get it checked out thoroughly if you haven’t already. My husband had dreadful muscle spasms over Christmas and further investigation revealed multiple spinal lesions and a fracture. Getting out of bed was really difficult as every movement brought on more spasms. If you have had scans etc and it doesn’t seem to be down to bone damage, maybe a physio referral would be possible? My husband has been offered hydrotherapy but probably won’t start till after chemo.
i do hope you get this under control very soon.
Sarah
Hi Terry,
I don’t know if this helps, but my husband is having prednisolone with Velcade and cyclophosphamide as he had severe psychotic side-effects when he was on Dex last year (for spinal cord compression, before myeloma diagnosis). He is on his 3 rd cycle now and there have been no serious side-effects. I don’t know whether another steroid is an option for you, but it may be worth exploring.
Hope you can find a way round this soon.
Best wishes,
Sarah
Well done on getting away, Maureen. It sounds lovely. It is so important to have experiences that take you away from the daily routine and give you good things to think about. Sounds like good timing too.
Enjoy the weekend and I hope Monday’s appointment is positive.
Sarah
Hello. So sorry to hear your news. Your story is so similar to ours. My husband was diagnosed after spinal cord compression and a plasmacytoma tumour. He has a lot of damage to his spine and the full myeloma diagnosis was given in January. He just started his 3rd cycle of VCP today. He is 44.
One of the really big changes in our lives is that it is now impossible to plan ahead. I find that really difficult but have to see it as a discipline that needs practice.
I think we all have to find our ways of dealing with things and everyone’s situation is different. I have found this forum very useful, though, and there are plenty of people who can offer their perspectives if you have questions. I can’t help with the Zometa question as my husband is on Loron, which is a bisphosphonate taken daily in tablet form.
If you haven’t read the infosheets on this site, you might find they answer some of your questions. They are very clear.
I hope the appointment on Monday goes well.
Sarah
Hi. I’m not the one with myeloma but my husband was diagnosed at the start of January after having had a plasmacytoma diagnosed and treated last year. I think any pain should be taken seriously, so don’t wait until your next appointment with the consultant but get it checked out. If you have a clinical nurse specialist, give her/him a call on Monday. They should advise you what to do. If you don’t, it may be worth speaking to your consultant’s secretary to ask for advice. The GP may not be much help, as most don’t know a lot about myeloma and perhaps aren’t in the best place to judge whether or not your pain might be related. If you are getting pain that severe, you really do need to do something about it. It may be something trivial in the end, but at least you would know and be able to stop worrying.
I hope in the meantime that the pain eases.
Sarah
That’s great news, Fiona! I’m so pleased for you both. It’s wonderful to discover that what you have been hoping for is actually happening.
I’m sure your husband is young and handsome. They stay that way in our eyes at least! 😉
Enjoy the moment and thanks for posting your encouraging news.
Sarah x
Hi Julie,
My husband’s surgery was carried out at the Nuffield Orthopaedic Centre in Oxford. They have a number of spinal specialists there, but his consultant is Jeremy Reynolds. Our local hospital felt that he needed a level of specialism they didn’t have, as their spinal surgeon was more experienced in lower spine.
I do hope you can make some progress. If my husband is anything to go by, the pain dominates everything and life becomes very difficult. He’s only 44 but wasn’t able to do very much at all. It was almost a relief to get a diagnosis and he has done very well after surgery.
Best wishes,
Sarah
Gill,
I have started a reply to you a number of times but nothing I can say seems adequate.
Thank you so much for sharing yours and Stephen’s story. My heart goes out to you. I hope that over time you can gain some comfort by knowing that you made the best decisions for both of you, and that you can draw on the good and happy memories of your life together. The thought of the westies as monsters made me smile!
At the moment I’m really just thinking through a lot of possibilities about how I might make things work and, thanks to the advice of others here I have more of an understanding that there will be different needs at different times, so I need flexibility. I’m planning to have a chat with my boss next week, just to make sure he has some understanding that there is not going to be any predictability in my life, and starting to think through how I can fulfil my responsibilities to my employers at the same time as making M’s needs my priority. Of course I’ll be a bit more subtle than that! The support is there in practical terms, but he has had a bit of an “empathy bypass”, as I put it.
Thank you again, Gill.
Megan – thanks again. You do have some helpful suggestions. I hadn’t even thought about hospital transport. M used it when he was having radiotherapy last year, as he had to go to a hospital over an hour’s drive away every day for 5 weeks, and there was no way I could have done it (well – I could have done had that been the only option!). At this early stage I like to be at every appointment as I’m the one who asks the questions (you might have picked that up!), and M feels quite vulnerable, but it is certainly an option for more routine things, like physio appointments, or speech therapy (which he has because the neck surgery damaged a vocal cord).
Really helpful advice. Thanks! Hope you are having a good week so far.
Sarah
Hello J,
I don’t know if anything I can say is helpful, but my husband had collapsed vertebrae in his neck last year (C6 & C7). At that stage he had not been diagnosed but, after a lot of investigation, a plasmacytoma in his neck was confirmed, and this has now progressed to a diagnosis of myeloma. He had been having treatment for severe back pain – physio and even acupuncture. Eventually he had an MRI scan and everything happened very fast from that point on. He was referred to a specialist spinal surgeon and had surgery within 10 days of the MRI because the surgeon was worried about the possibility of spinal collapse. He also had spinal cord compression, which was one reason the pain was so severe.
His first operation was last April, before diagnosis, and he ended up with two rods and 12 screws to stabilise his neck. He had further surgery in July, at the front of his neck, to insert a cage and bone substitute to replace the eroded vertebrae. He had to wear a neck brace at all times – even in bed – but has been able to stop wearing it in the last couple of weeks, after lots of physio. It’s such a relief to see him without the brace and free of pain in his neck.
The neck operations were major ones, but they were carried out in a specialist centre and we knew the surgeon had an international reputation and lots of experience. We felt completely confident in his judgment and expertise.
At the moment my husband has a fracture in his lumbar spine but is on chemo and the orthopaedic surgeons don’t want to do anything. He’s coping with lots of morphine. Once he has finished chemo we will push to find out what can be done to deal with the latest fracture, but his consultant hasn’t had the full report from the orthopaedic surgeons yet.
I don’t know whether they are reluctant to do anything to deal with fractures whilst other treatment is going on, but that’s what we are assuming. However, once we will be asking lots of questions once the full report comes through, and will ask for a referral to the centre where my husband had his previous surgery if the local hospital doesn’t come up with a plan.
I can only suggest that you push the hospital for more answers. What can be done to make your mother more comfortable now? What are the options longer-term? What are the reasons for saying nothing can be done at this stage? I do hope you can get some answerw, but more importantly in the short term, some relief for your mother from her pain and discomfort.
All the best,
Sarah
Great news! Long may it continue.
Thanks for sharing this encouragement.
Sarah
Thanks for your replies, Angela, Megan, Helen and Fiona,
You’ve given me a lot to think about. I think the main message that comes across from everyone who has replied is that it’s sensible to keep my options open. I do have virtually all last year’s annual leave to use, as well as this year’s, so that gives me a bit of leeway. My GP is brilliant and very sympathetic, and has asked me to see her every 4-6 weeks. This started when I got a hospital-acquired infection after M’s first operation last year. At times she has given me a certificate so that I can restrict my hours at work as she has recognised that my stress levels have been quite high. As I’ve been in my job for over 9 years, I’m on the maximum sick leave allowance.
My employers have been sympathetic in practical terms, although at times I sense a bit of impatience. I think they thought M would get better and I would be able to get back to “normal”. I do have a lot of flexibility but there are only 5 of us working for the organisation and we each have quite distinct responsibilities, so if I don’t do the work, there is no-one else to do it. At the moment M has two appointments a week – one with his consultant and one for chemo. He can’t drive and public transport isn’t an option. In any case, at this stage, I want to be with him. I can’t leave him overnight and if I need to go out for the day, we have to arrange for someone to come round to get his lunch etc., as he can’t stand for long enough to do that. However, your advice is helpful, Megan – things should improve and I might then have more flexibility.
We don’t have family nearby. M’s mum lives about 90 minutes drive away and has weekday childcare responsibilities (looking after his sister’s children). I lost both my parents a few years ago, and my sister (who is brilliant and very supportive) lives about 2 1/2 hours away, has 3 children under 11 and a demanding job. We do have some good friends, and a lady from church came today to relieve me of my ironing pile – which was much appreciated.
I think the advice not to rush into things is good. I need to see what M’s ongoing needs are and find the best solutions for the way things are at different stages. I will arrange a meeting with my boss and bring him up to speed – again some good advice from some of you – and work out something that works for the next couple of months.
Thanks again all of you. I will be thinking of you all.
Sarah
