[SalParticipant]

Hi Graham,

Good to hear from you. Well done on keeping positive. I hope your recovery from SCT is going well and you can feel yourself getting stronger.

We’ve had a much better week. M’s consultant suggested he took the cyclophosphamide over 5 days rather than all at once and he hasn’t felt sick since. He’s been eating well and has generally been a lot brighter. The physio suggested that he could have a referral to the hydrotherapy pool after chemo, so that might be a good way of building up his muscles without putting too much pressure on his spine. He had his first Velcade of cycle 2 yesterday and has been fine today.

Thanks for getting in touch. Wishing you all the best.

Sarah

[SalParticipant]

Haha!!

I had guessed it might be something like that, but thanks for the laugh. I’m sure if you covered your face with enough gunk it would have the same effect and keep the germs at bay – plus your skin would be glowing! On second thoughts, maybe the Mund Schutz would be the best option 😉

 

[SalParticipant]

A packet or tube of some gunky stuff to put on your skin to reveal the beauty beneath! 😉

 

[SalParticipant]

Thanks Jean,

I appreciate you taking the time to get back to me on this. I can really relate to not being able to concentrate and worrying about going off to do other things. I know I tend to make quick decisions about all sorts of things so I’m deliberately holding back at the moment.

I hope Frank continues to improve and that you find something that you find fulfilling.

Best wishes,

Sarah

[SalParticipant]

Thanks Vicki,

It really helps to have encouragement from others who know what it is like. Prawns make me nervous at the best of times, so no trouble steering clear of those. I’ve told M that I think the treatment is tiring – for me! We were at the hospital twice yesterday, and the second appointment was about 90 mins late. I always go prepared, with a bag containing books, crochet (my addiction), snacks and – my new treat – a leakproof vacuum mug of tea (keeps hot for 5 hours – marvellous!). Great to hear that Colin is in remission. I hope it means you can do lots of things you enjoy.

Harmony – well done you! Sounds like a great decision to do things you really want to do. I’m pleased for you.

Sarah

[SalParticipant]

Hi Harmony,

I’m so sorry to hear that things are difficult for you and you don’t feel supported at home. I think everyone has different ways of dealing with things that are hard for them, and maybe your husband can only cope if he pretends it isn’t happening. My husband’s family is very much like that and I’m trying to get beyond frustration to recognising that is their way of dealing with things that are difficult. I hope the forum helps you in some way, as everyone seems to have a different way of living with myeloma, and some suggestions I’ve had have really helped me to think how I might support my husband.

I’ve made a resolution (which I shall no doubt break!), that I will be strong and positive at home and with most of our friends and family. I’m blessed with some wonderful friends and an amazing sister (who is actually a Macmillan nurse), and they’re the people I can turn to as and when I need support. I know I won’t get it right all the time and some of the time I do just want to hide under my duvet, but I’ll keep on trying. If your husband has to deal with things his way, then maybe the support you need has to come from somewhere else. Have you considered joining a support group if there is one nearby?

Keep positive and enjoy the good things as they come along.

Sarah x

[SalParticipant]

Thank you Peter. It’s good to hear from you. What is really helping me at the moment is reading all the positive stories from people like you who have been living with myeloma and its effects and still getting a lot out of life. My husband is now into the 3rd week of his first cycle of chemo. He’s been out of hospital for a week and it has been difficult. He’s always had a hearty appetite but really doesn’t feel like eating much. I’m trying to be relaxed about it, ask him what he’d like and give him small portions. A whole slice of toast has felt like a bit of an achievement most days. Still, in many ways it’s early days. He’s trying to cut down his morphine doses to the level where the pain in his spine is still under control because his consultant thinks the nausea may be down to the large doses he’s been taking. He’s also been told to take the cyclophosphamide over 5 days instead of all at once. He has quite a large dose because he’s a big chap!

I think what is most difficult is the combination of the physical limitations imposed by the spinal damage plus the general “yuckiness” of being on chemo.

I don’t know if I can be a wonderful wife like yours. All I can do is my best!

Thanks again,

Sarah

 

[SalParticipant]

I’m quite relieved to find this post as my husband has been hiccuping madly from 24 hours after his second dose of chemo (Velcade, cyclophosphamide and prednisolone). It woke us both up a few times in the night. In his case, though, it’s not just irritating, it hurts because of the jolting to the fracture in his spine.  He has chemo clinic on Tuesday, so we’ll mention it then. He’s taking metoclopramide as anti-sickness. No sickness so far this time (chemo was Friday morning), but his stomach has been gurgling and he says it feels like a washing machine.

Any suggestions to help him feel more comfortable would be really welcome. We’re new to all this so hope we can benefit from the collective wisdom of those of you who have been living with it for longer.

Thanks,

Sarah

[SalParticipant]

Thanks Nick!

Angela – hope you have a lovely weekend that will keep you going for  the weeks ahead. Time spent with friends and family is precious and time well spent. Hope you have lots of laughs.

Sarah

[SalParticipant]

Well – M is home at last. Now I have to get to grips with things on a practical level, but I think we can relax a bit more in our own home, even though he did have excellent treatment in hospital and his pain is now under control. The big bottle of handwash is by the front door for anyone who visits, and we are now equipped with raised loo seats, a handle to help him get out of bed, and a couple of grab handles should be fitted on Monday or Tuesday.

M is currently working on a spreadsheet so that we can record all his drugs, when to take them, and when he has taken them. He had his second dose of chemo today and seems ok at the moment, but we know that it gets worse for many people as you go through the cycles. We have also got a patient diary which we will begin to fill in.

So here we go for our first weekend at home post-diagnosis.

Hope you all have a peaceful weekend, whatever the weather.

Sarah

[SalParticipant]

Hi again Harmony,

I’m pleased you’ve found the mindfulness techniques useful. They emphasise that it is a practice and you have to keep practising! One of the key principles I learnt was to be kind to yourself if you don’t feel you’re doing it very well and look at the way your mind wanders with a kind curiosity.

Don’t worry too much about the Buddhist roots of mindfulness. What is out there now, particularly from the Oxford Centre, is in no way religious, but I’m sure could be used alongside any prayer and meditation you might practise as part of your Catholic faith. I’m a Christian too and I don’t find any contradiction using mindfulness . I think it should really be acceptable to people of most faiths and beliefs as it’s not trying to change what you think, just to allow you to have some control over the thoughts than run through your head like wild horses.

It’s such a shame that you can’t get going with the counselling. Have you tried to find out whether there is another counselling service in your area that works on a not-for-profit or charitable basis? It maybe worth checking out at your hospital if there is anything available for cancer patients. Our hospital is only a regional general hospital one and doesn’t have a cancer centre, but there is a Macmillan information point and they advertise all sorts of things. The specialist hospital where my husband had radiotherapy last year has a Maggies Centre and they offer counselling.

I hope you’re having a better week.

Sarah x

[SalParticipant]

Hello everyone!

Thanks so much for your replies and for telling me about your experiences Andy, Nick, Eve, Jean, Angela, Helen and Mavis. I really appreciate your help and good wishes. Angela – it really cheered me up to think of you going out and having a good time and enjoying life – particularly the karaoke. It has helped me to feel less neurotic to know that some of you haven’t been given any advice about food and that you’ve all found your own ways of dealing with it. Maybe  I don’t have to be Mary Poppins (practically perfect in every way!)!

M is still in hospital. He had his first chemo on Friday and has felt grotty since then.  He should be able to come home as soon as the occupational therapists have sorted a few things out – like how he can get in and out of bed and up from chairs and the loo! Someone is supposed to phone me to arrange to come round in the morning but I’ve heard nothing. It’ll be a bit embarrassing showing them round the house as it’s in a bit of a state. I’m not a domestic goddess and I’ve somewhat neglected the tidying and cleaning recently. Fortunately M’s mum is coming at the weekend and she loves ironing, so my enormous piles of un-ironed clothes should keep her happy for a while.

Mavis – no-one has talked to us about SCT yet. He was only diagnosed on 2 January and the focus has been on pain management and getting the chemo started. It’s probably best for M not to have to deal with any more than one day at a time right now, so if I ask any questions about it I’ll do it when I’m not with him. I’m usually someone who plans things and has all sorts of things worked out. As far as dealing with Mark’s illness, though, I don’t actually want to deal with more than one step at a time.

Thanks again everyone. It is so helpful to have your help with my questions.

Sarah

[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

[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

[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, 10 months ago by  Sal.

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