Myeloma

Myeloma is a cancer of plasma cells in the bone marrow. If you're suffering from myeloma, or know someone who is, join this support group.

Post treatment and can't talk to people

Sparky1976
Posted by

Hello all, I am 43 and just finished 2 1/2 years of treatment and had a stem cell transplant in February.

My fiance and daughter lives in the USA and I have been staying at my parents in the UK for this time for treatment. So I have hardly seen them.

Since treatment I don't go out and stay in my room, although I have just started a return to work phased plan so that will help.

I don't like groups off people anymore than 3 and I clam up inside, is this normal?

Also I had been drinking to cope and that's when the trouble started.i would text my finance things accusing her of stuff and things( she didn't deserve it) and I wouldn't remember sometimes in the morning what I have said.

I have vowed to never drink again and joined a group, my finance has said that she doesn't want to talk to me she needs to think and she will contact me when she is ready. 

I hope I haven't lost my family BC of stupid actions.

I suppose the fact she is thinks about things instead of ending our relationship is a good thing? 

I am just now getting back to a normal life and work certain to help.

greg777
Posted by

Hi Sparky,

Welcome to the forum, although I’m really sorry to read about your current situation.

It is fair to say that a diagnosis of myeloma can mess a lot of things up. I am guessing that you had a fair degree of isolation during the SCT process, and that can definitely make joining back in with the human race again a bit daunting - I definitely suffered with a fair bit of anxiety at this time. I think work will definitely help with this - I think it’s important to force yourself if you can, with small steps to start off with.

I’m really sorry to read how things are with your wife. My wife and I also went through a rocky patch, although we didn’t have the physical distance, which must be really tough. I think if she says she wants time, it’s important to respect that. Time will be a great healer and if you can stay off the alcohol, I think that’s a great idea. I don’t drink anymore - I decided after my treatment that I’d had enough of mind-altering drugs and I realised I didn’t need it, and it was actually no good for me.

I hope the above is helpful, and please do stick around here, I’m hoping you’ll find it a place of good support.

Greg

Sparky1976
Posted by

Thank you Greg, the distance has been bad, and yes I think this is also a test by her to see if I will respect her wishes.

We have alot to loose and I feel horrible for the things I said.

Thanks for sharing and yes I was in hospital for 4 weeks post transplant in isolation. 

Small steps, it hurts not talking to my daughter but I don't want to force the issue with my wife just now.

greg777
Posted by

Sounds like the right idea Sparky. Hopefully soon you’ll get things sorted and it’ll be like you were never away.

Greg

SLW1960
Posted by

Hello Sparky Just wanted to respond by saying look how far you have come! You and I are in about the same place. I also had an STC in Feb 19 and I completely  understand  what you mean about talking to people!  I want to and am pleased when I get to spend time with other people but find it hard to deal with a lot of chatter. It is as if I'm not quite engaged sometimes. I do spend a lot of time on my own and in all honesty I prefer it! 

You have had what sounds like a very long journey with MM to get to this point and from what I gather apart from your very nearest and dearest. That is very difficult for you indeed.

Hope the return to work helps you and that your present difficulties  resolve. It certainly is not an easy road we have in front of us but it is our new reality  and we have to find a way to live this new life. 

When I look back over the past year and a half I know for sure that I am in a better place now! 

Wishing you the best

Suex

SUEW1960
Sparky1976
Posted by

Hello, thanks for the reply, it has been really hard for my fiancee looking after 3 kids having a full time job and having to deal with me away under treatment.

I think she she said she had to think and to leave her alone till she gets back to me was the kick in the ass I needed.

1. To stop drinking wine at night. In fact stop drinking altogether it was a false sense of confidence to allow me to talk and deal with other people.

2. To realise that the cancer didn't just affect me it affects the whole family, I might have been having the treatment but the side effects have travelled to the family again. 

3. Having a positive outlook, I wouldn't have been here today for my daughter if the great docs hadn't manage to save me. I need to take this going forwards get well and provide for my family and love them.

SLW1960
Posted by

Hello again. Yes you're  quite right that this takes a huge toll on our families and people who love us and care  for us. We have been through quite an ordeal  you and I and its bound to have an enormous  impact on the lives we now lead. Its perfectly understandable that we reach out for something to cheer us up and take the edge off whether its wine or in my case chocolate  and cake! But as you say you come to realise that that's not the answer and curtail it. We shouldn't  beat ourselves up about it though. We are coping with a lot of changes!

You're right to be positive.  We've been dealt a huge blow but there is so much to feel positive  about. From what I read there are lots of different  treatments  available and one day I'm sure there will be a cure to see it off once and for all.

Good luck to you and your family

Suex

SUEW1960
Sparky1976
Posted by

Thank you, I am sure we will be fine, it doesn't help because people don't understand how bad you can feel post treatment, trying to explain to my fiancee that I have no energy, I don't like groups of people.

She had a 13th birthday party for her daughter and was like 15 people there, I couldn't stay outside I cooked the burgers etc then went inside, I think she thinks I didn't want to spend time with them, but that's not the case. The people must have thought I was being weird. But I felt overwhelmed and all the different voices etc.

It's difficult BC she is 4000 miles away it's not like she could come to therapy with me so they can explain all these feelings.

I would suggest she comes on this site to hear from other people and try to explain in better terms than me ( other than say I have changed) what's going on.

However at the moment I am not allowed to text her or call she will get in touch with me.

I did have to text her today only to apologise for texting but I had send her a letter on Saturday before we agreed to give her time. And to put it in the trash as she said no contact. Haha oh my. However I am glad I have finally found this group, I should have reached out months ago.

One big issue is as well I went over to the states 4 months after my stem cells for 8 weeks I was still recovering I had no energy and didn't want to do anything but look after my daughter while she was at work. I didn't interact with her and her 2 other kids I was flat out in pain.

There was one day she asked me to go to camp with her and the kids, but I couldnt, I think she was hurt BC she thought I didn't want to do anything with our family. Until you god forbid have to go through this you can't explain how you feel after it.

Thanks 

Sparky1976
Posted by

But now I am getting help, kicking myself into touch. One step daily, positivity, I survived this, I will prove to my family I was worth the wait.