[breannamaeParticipant]

Hi

I have a friend that has myeloma. My sister has also been diagnosed with Waldenstroms,which are similar in a way.  I wonder if anyone with Myeloma has been diagnosed without having their bone marrow tested.  My friend has been told she has Myeloma but did not undergo this test. Thanks

 

 

 

 

[petesilverParticipant]

hello Sal

I see you have already had lots of advice and your husbands journey sounds much like mine.

Having had mm now for over ten years and been through several lots of treatments two things come to mind one is never feeling like eating, my wife use to cook nice meals only for me to say I’m not hungry but being the wonderful wife she is never complained, she is the one that got me through the worse times. I know that at times you always take things out on the one nearest to you, it’s a terrible thing to say but when your down these drugs do funny things.

Enough of that and I hope his treatment goes well

x Peter is

 

[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

 

[HarmonyParticipant]

Hi Sarah,

I just wanted to say that I think that your love, strength and interest will be highly beneficial to your husband. It’s just the reassurance that comes from knowing that someone full of hope and positive energy which will help make things easier for him – not everybody has this. My husband very much follows the ‘let’s carry on as normal and pretend this isn’t here philosophy.’ He almost sneers at my attempts for our family to follow an organic, mainly vegetarian and wholewheat pasta diet and simply sees this as my over-the-top mentality. Sometimes, just convincing him that these things are worth a try is exhausting! I’m the one with the MM but it feels that this is very much only my battle.

[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

[bandityogaParticipant]

Hi Sarah

Don’t give up hope. My husband was told he might never walk again and is now walking with sticks and can climb the stairs. Be positive and take one day at a time.

My husband drank lucazade which gave him energy.

Maureen

[HarmonyParticipant]

Hi Sarah,

Wishing u and your husband strength and comfort during this difficult time. Sounds like everything is being done to prepare for his homecoming – well done u. I’m not too badly off really Sarah – I just get my ‘down’ days when I feel full of self-pity but I’ve a lot to be thankful for. My two beautiful children are my light, my hope. I’m being far more proactive – I joined a creative writing course and reduced my working week to 3 days – I’m okay really. Wish u well.x

[VickiParticipant]

Hi there,

Just logged in to say hi and wish you all the best with the treatment regime. My partner Colin was diagnosed in October 2011. Like Megan we are still careful about what food we eat and I still get nervous if we have prawns! Colin had a transplant in November 2012 and thankfully so far still in remission.

It’s a tough road for the sufferer and a tough road for the supporter, in another way because there are time when you feel helpless,but keep focussed and do try to get some rest. It’s a tiring road

Vicki and Colin x

[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

[WillisboyParticipant]

Sarah,

I am very sorry to hear of your husband being diagnosed with MM, especially at such a young age.

I was diagnosed last March at the age of 50, and that is considered young for MM.

My advice is to remain positive and plan for the future. I vowed to remain positive throughout mine, which I have apart from a few low periods.

Just believe!

I am now in remission, have had my SCT and am now recovering from this.

Keep us posted and all the best to your husband.

God bless you

Graham

[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

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