[RozParticipant]

Hi

I would like to share or even chat to others like myself. I haven't got MM but my husband has. Because of the bad experiences I have suffered trying to deal with things that happen to Michael towards myself and his condition, it will be interesting to see that I am not alone.

I'm going through a bad patch at the moment and just need someone or something in my life to keep me going. Michael is still in hospital, I spend time either alone or visiting him. I have carers but one doesn't sit and chat with me like the others do, she's been on the last 2 days so I mighn't as well be alone.
:'-(
Have any of you suffered from your husband or family member when they are having a UTI? Michael's hallucinations, and vagueness can be very hard to bear sometimes. Does anyone know how to keep telling yourself it's not your husband it's his condition, tablets or infection? I just feel like I'm loosing it and he needs me.

Hope you don't mind but I'm desperate for help.

Love Roz

[MariParticipant]

Dear Roz,

I have been reading your posts over the last few months, but sometimes dont reply as I dont have as much to add as the more experienced people on here. I know you have had a really tough time recently. My husband Steve has just had his SCT and has been home from hospital for 3 weeks. I am so lucky that I still have my daughter living at home. She is a Carer in a rest home and I have been able to rely on her a great deal. However she is off travelling to Australia a week tomorrow and I know we are going to miss her terribly. I know what you mean about needing someone else to talk to when you cant talk to your husband. There are just somethings you cant say to them. I work full time as a teacher and that helps me a great deal. Do you have any friends or family that you can chat to on the phone in the evenings, especially when things are especially difficult with Michael? Is there anyone close enough to just pop in even for a few minutes to see how things are going? I am really happy to be here for you as much as I can but I dont know if i am knowledgeable enough to help with some of the things you are going through but I am always happy to listen. I know you live 'up north' somewhere but I wish i could give you a big hug. I think you are doing a great job in very trying circumstances. Just give yourself some time and know you are doing the very best you can for Michael. Dont worry about not doing enough, we are all only human. I am sure he knows how much you love and care for him even though he is feeling unwell and battling with this awful disease. I have seen that in Steve sometimes when he has been very ill, almost that he has no time or strength for anything else but the battle. This has become a very long message but I hope you get some comfort from the fact that we are all in this together and we support you as much as we can and stand behind you in your difficulties,

Love and HUGS, Mari xxx

[RozParticipant]

Thanks Mari

This means alot. Unless people have been through or going through what we do every day, they really don't understand. It's nice to know someone knows what I'm talking about. I just think the longer he stays in hospital the harder it becomes. I'm spending the day with him tomorrow, seeing his consultant too. That way I'll know if and how things have progressed and to see if he can come home. But if he continues with the infections the answer will be no.
I'll start and think more about myself and hope this depressing feeling soon goes away.
Love and thanks
Roz xx

[jmsmythParticipant]

Hi Roz

I also have been following your posts and like Mari am a carer for by husband Frank. I am always on my computer so if you want a wee yarn (talk) just post. But also like Mari I don't know about treatments. Frank has smouldering and is not on treatment. I get my info from all these lovely people on the forum. I have been in dark places in the past 4 years but I am fortunate that I see a lovely consultant (offered by the cancer unit) who allows me to rant and rave as much as I like.

My love and best wishes go to you and Michael.
Love Jean x

[RozParticipant]

Hi Jean
Wish I could rant and rave to Michael's consultant. Brian a close mate checks on me daily via phonecalls and tells me to do it to him though. I don't though but sometimes I break down.
It's nice to know I can let it go on here, so after tomorrow seeing the consultant and visiting Michael I may have to do just that.

I'll keep in touch.

Thanks for everything

Roz

[jmsmythParticipant]

Hi Roz

I go to see a counsellor (My mistake on my post I said consultant instead of counsellor. Couldn't rant to Frank's consultant – I think she would have me for dinner!!!).

When Frank was first diagnosed, I couldn't cope. I just went to pieces. We have a Cancer drop in center and they put me in touch with a counsellor. I went to see him for about 9 months. Felt better so stopped. Then about 2 years ago – the whole think hit me again. I don't know why but I went to pieces. Frank wont talk about his ilness so I had no outlet. I had great support from the forum expcially 2 of the youngsters (under 50's).

I got in touch with the counselling service again and I go and see Declan (the counsellor – he is great. I used to go every week and then I cut it down to once a week. I feel a lot better now. I phoned the Psychology department yesterday and told them I felt good and did not feel that I should continue. Declan phoned me this morning and said that anytime I needd him just to give a ring. I feel good knowing that I have a crutch that I can lean on.

Sorry Roz for going on but i can honestly say it is the best thing I ever did. Declan listens to me when I rant and rave – cry and get on like a lunatic. With out sounding dramatic, he saved my sanity! I think it is so good to talk to somone that does not know Frank and listens to what i say.

I really hope that soon you start to feel better, I know that horrible feeling of helplessness. Can Michael's consulant recommend someone for you?

Take care
Love Jean xx

[RozParticipant]

Hi Jean

Thanks for caring. After yesterdays response from Michael I'm wondering why I care and do what I do.
My husband is a jerk

Roz

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