[SalParticipant]

Hello! I’ve been reading the forum for a few months but have now decided to join.

My husband, aged 44, has just been diagnosed with myeloma. He had a diagnosis of a solitary plasmacytoma in his cervical spine in April and has had two admissions for major surgery to stabilise his neck, plus 5 weeks of radiotherapy. Unfortunately, his disease has now progressed to myeloma, which was confirmed last week, after a bone marrow biopsy. He has further damage lower down his spine, including a fracture, and is currently in hospital while they get the pain relief sorted out, plus support from occupational therapy to help us make it easier for him at home.

His consultant has decided not to hang around and is starting chemo on Monday. He will be on Velcade, thalidomide and prednisolone. It’s not a combination I’ve seen mentioned, but he had a severe psychotic reaction (completely and dangerously out of his mind!) resulting in 10 days in hospital last year when he was given dexamethasone. We’re all keen to avoid a repeat of that.

Obviously, like all of you, we wish we weren’t in this position. However, we are and we need to focus on getting through it and getting the most out of life. I hope I’ll be able to draw on the wisdom and experience of others of you as we start this journey.

At this stage it would really help me if anyone has any tips on how I can best support M as he starts on his chemo, and anything that might help him to feel happier and healthier as he goes through the cycles.

With thanks,

Sarah

[meganjaneParticipant]

Hi Sarah,

Sorry to have to welcome you and M to the forum but it is a great place for advice and support. My husband Phil was diagnosed with Myeloma at the age of 43 in May 2012. His first line of treatment included Velcade (in combination with dex and doxorubicin). A possible side effect of Velcade is peripheral neuropathy so please make sure your husband reports any tingling or strange sensations in his fingers or toes to the consultant immediately as steps can be taken to hopefully decrease the problems it may cause.

Make sure you look after yourself as well, don’t try and do too much, ask for help so you don’t get over tired. The best way for you both to be healthy and happy is to focus on the things that are important to you both, take things one day at a time. Phil hasn’t done anything specific to be healthier – while on the chemo he actually developed a sweet tooth for the first time so I kept chocolate in the house at all times 🙂 Trying to eat a well balanced nutritious diet won’t do any harm but treats are nice to.

I hope your husband’s pain is sorted out soon so he can come home.

Megan

[eveParticipant]

Hi Sal

Welcome,I think at the beginning it is a big learning curve,your husband will just want to get on with the treatment and I think you would be a help to him if you learn,t all you could about Myeloma plus side effects of the drugs,although it’s your husband who has Myeloma it will effect the whole family,and you will have to be the strong one,asking questions and finding answers,be very active.your husband will have his own fears,and if you can answer any questions he has it will help him.

Try not to constantly do things for him,that he can do for himself,it is hard when you watch them struggling!pamper him at your peril,plus he will have mood swings,he is your husband first,and you are the carer second,try to keep the myeloma out of the living room and have some normality in your life.

We all ways try to go out every day,on bad days just a car ride to watch the sea,on a good day a short walk,then pushing wheelchair,blows the cob webs away,and I like to think I am loosing weight pushing a wheelchair .lol.welcome to the roller coaster

[SalParticipant]

Thank you Megan and Eve,

I know I am far from being the only one in this situation, but it helps to have some contact with others. I read up a lot about myeloma when M was first diagnosed with plasmacytoma, as we knew there was a high possibility it could progress to myeloma, but it’s different when the possibility becomes reality.

My big question at the moment – and I won’t rush into making a decision – is how/whether I can sustain full-time work, which involves quite a bit of travel. We obviously need to have money coming in.

That’s not really today’s problem, though. It should be the first chemo day today. M had a high temperature yesterday, but I wonder if it’s linked with his first zometa infusion, which he received on Saturday. He was going to ask. At least he is still in hospital, so things can be sorted out more easily.

thanks again,

Sarah

[meganjaneParticipant]

Hi Sarah,

The work question is a tough one but I think you are right not to rush to make a decision. You and M are like Phil and I, too young to consider early retirement but you still need to get the work/life balance right. Unfortunately/fortunately Phil had volunteered for redundancy a few months before his diagnosis. We had sold our house and were going to move to Devon. A few weeks after his last day at work he finally got the MM diagnosis but we had already realised we couldn’t move so had pulled out of the sale and I hadn’t yet resigned from my job. The up side of this was that Phil did not have to worry about work during his treatment and SCT. I was already part time (I work the first two weeks of the month) so I carried on doing this. Even with having half the month off I still got too tired sometimes, especially during and the first few months after his SCT. It is hard trying to juggle everything but as with all things MM related, everyone is different – this applies to the supporters as much as the people we are supporting.

M may have had a touch of Zometa flu but as you say he is in the best place to get it sorted and to decide when to start the chemo.

Continue to learn all you can, I am still learning things now but it all helps you to know what questions to ask and what to do when things happen.

Megan

[SalParticipant]

Hi again Megan,

Thanks for sharing your story. You must really have gone through the mill when Phil was diagnosed. So sad to have to give up your dream, but it doesn’t take long for us all to understand where our priorities really lie, does it?

Chemo didn’t start today. M had a high tenperature last night so they have given him IV antibiotics. His temperature  was ok this afternoon but his consultant was taking the opportunity to consult with a colleague in another hospital before he finalises the chemo plans.

Fortunately I can work from home quite a bit at the moment and I’ve got lots of holiday to use up from last year, so i can be very flexible for now. My boss understands the situation and knows that work can’t be my priority right now.

We met one of the haematology clinical nurse specialists today and she said that once the chemo drugs are sorted out, she will make sure I have lots of information.

My main problem at the moment is that I’m finding it difficult to sleep, and that’s really unusual for me. However, these are unusual times, and this will pass.

Tomorrow is another day and there will always be some good things in it!

Sarah

[hikernickParticipant]

From my point of view going through chemo at present I would say psychological support is as important as or more important than physical. Physical help is easily measured – if he can’t do something, you may have to help. I personally can do most things albeit a bit more slowly and with attendant fatigue so I try to get on and do so. Encourage M to be self-sufficient as much as possible although it sounds like he has some nasty disabilities to contend with that I have been lucky to avoid.

Psychological support is much harder to gauge but try and be aware of how he is feeling. For example, I had a big hurdle to overcome the first day of treatment – actually sitting down and taking drugs. Because mine were all self-administered at home, I was completely alone when I swallowed the first lot of pills. Try and sense when these mental lows are likely to occur – or better still, get him to tell you, and be there with a hug and some comfort when he needs them. There will be periods of depression – you don’t get terminal cancer without frequently thinking about death (well I don’t), so be prepared to act as a little ray of sunshine from time to time.

Re work – you will have to play it by ear. I’m still working and so is Mrs C. but your own circumstances will dictate what you can or can’t do. Preparing your boss for having you work from home in the medium term sounds like a good start to me.

Hope this helps.

• This reply was modified 10 years, 3 months ago by  hikernick.

[bandityogaParticipant]

Hi Sal

Sorry to hear about M. My hubby is 57 and has had several operations on his spine and lost mobility. He is now walking on crutches and getting stronger after more than a year in hospital. Take one day at a time and try not to look far into the future. Comfort him but do try to make him do things for himself and be independant.

Go to the doctor for something to make you sleep. You can’t cope if you don’t sleep .
Maureen

[SalParticipant]

Thanks Nick and Maureen,

It really helps to hear about your experiences. Really encouraging to hear that you are managing to work, Nick.

My GP has asked me to make regular appointments with her since M had his first spinal op, as I was the one who ended up with the hospital-acquired infection! She’a really supportive and keeps telling me how important it is that I stay healthy. I’m seeing her on Monday so will certainly tell her about the sleeping. Might just get a pack of Nytol in the meantime.

M has still not started his chemo. He’s been told he’ll be in hospital until at least the beginning of next week, which at least gIves me a bit more information. The  regional myeloma MDT is on Thursday and his case is being discussed then, so I think chemo will now be finalised after that.

Hoping your week has started well.

Sarah

[SalParticipant]

Well, the chemo started today. It’s now Velcade,  cyclophosphamide & prednisolone. They had to get special permission to use this combination, but it’s because M suffered such a severe reaction to dexamethasone last year that every effort is being made to avoid it. We’re not sure how often he’ll have to go to hospital, as the nurses don’t seem to know whether he will have the steroid as an injection or orally. As M is still an in-patient, things work a bit differently. For once I’m fairly relaxed about how it works. We just know we need to go along with the regime, hoping and praying that it zaps those pesky myeloma cells for as long as possible.

We had the pre-chemo talk this  afternoon. I can feel myself becoming slightly neurotic about what I cook when M is home, and how I cook it. I am pretty cautious anyway but this takes us into new territory. Obviously we’ll follow the “do not eat” list and avoid all those things – which means I get to finish the yummy stilton on my own – but  are there other tips anyone can offer? The nurse who spoke to us even suggested avoiding fruit that doesn’t have its own “natural wrapping”. M is not great at eating fruit and veg, but does like grapes, but it was suggested that they might be problematic.

Also, do any of you ask visitors to use hand-gel when they come to your house or is that over the top?

We’re hoping he’ll be home by the middle of next week, but we need an OT assessment first, then probably a hospital bed at home (hopefully temporarily) , and none of that has happened yet.

Any tips would be appreciated. There’s such a lot to learn and take in.

Thanks,

Sarah

 

• This reply was modified 10 years, 3 months ago by  Sal.

[meganjaneParticipant]

Hi Sarah,

Phil was never told he had to avoid any foods while on treatment but we did (and still do) make sure everything was thoroughly washed and/or well cooked.

I have a bottle of hand gel in each of the main rooms of our house but we never asked visitors to use it specifically, only if people stayed with us would I ask that they used it in addition to frequent hand washing. All of our friends and family were told though about the need to stay away if they felt unwell or had a cold. I also have anti bacterial wipes that I use on light switches, door handles, the staircase rail and any other surface I feel need to be kept clear of germs. During treatment I did this regularly.

You and M do need to be careful about germs as his immune system will be weak but you also need to enjoy yourselves. Just make sure you take sensible precautions, use hand gel yourselves if you are out and about and follow any of the advice that the hospital has given you.

I hope M is home soon.

Megan

[bandityogaParticipant]

Hi Sarah

Ian wasn’t advised to avoid any types of food but I do wash fruit thoroughly and we only eat red meat once a week. Was told to eat lots of proteins to heal wounds and I also give him a teaspoon ogre manuka honey every day as it is good for the immune system.

Hope M is home soon

Maureen x

[SalParticipant]

Hi and thanks Megan and Maureen,

Isn’t it strange that we’ve been given all this advice about food when you didn’t get any? It’s basically about keeping to “clean foods”, which means avoiding the sorts of things that pregnant women get told not to eat – blue cheese, raw eggs, probiotic yogurt, raw or lightly cooked shellfish. I guess that rules out a diet of cavier and oysters, then – just as well M has simple tastes!  Takeaways, particularly involving rice, are on the banned list too.

Thanks for the tip about the antibacterial wipes, Megan. I hadn’t thought about that and will stock up.

He’s really tired today and went right off to sleep twice when I was visiting. I go prepared with something to read and some crochet – which is my therapy, so I don’t mind just sitting there. I always work on the basis that we don’t talk all the time at home so it’s just about company. I’m also better at keeping things in proportion when I’m with M.

Hope you’re having a good weekend and that you got to enjoy some sunshine. It was gorgeous here today and I went for a lovely walk before going to the hospital.

Sarah

[hikernickParticipant]

Sarah,

We got all the scary food advice as well. I’ve mostly ignored it and carried on eating what I normally eat. I’ve found my skin is a little bit more sensitive than normal, and my digestion has been put out of whack by the drugs, but I don’t think I’ve suffered from eating any particular foods or from any infections acquired during cooking or around the house. The worst thing I’ve had to put up with was a cold over Christmas almost certainly acquired when I broke my self-imposed isolation (I’ve been working from home) and went into the office for a morning, followed by Christmas lunch with my colleagues at the local Chinese buffet – all my own fault.

Keep it in proportion, would be my advice.

Nick

[SalParticipant]

Nick – I know why you got the same food advice. Looked at your profile and saw you mentioned your blog, which I quickly scanned. You’re being treated at the same hospital! Hope that doesn’t sound stalkerish!! At this stage it is helpful for me to find out as much about people’s experiences as possible – there’s something bizarrely reassuring about knowing that others are dealing with things too, even if everyone has different issues.

Thanks for your post. It’s  really helped me having these conversations this week.

Best wishes,

Sarah

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