[kendrawParticipant]

Hello Jane,

Thank you for your post and I’m glad you are diving in here too 🙂 This must be a very difficult time for you as you move towards treatment and I am sure there will be lots of support on here from ppl who know pretty much exactly what you are going through. Your insight about how you wish you had worried less has helped me already and I am sure it will help me achieve my new normal a bit quicker keeping that in mind.

It is a very wierd feeling…and I know I am in a much better position than a lot of folk on here in terms of my disease (hats off to you all!)…but I often wonder how the world can go on as normal around me lol I feel like Im in a wee bubble isolated, scared and wondering why ppl havent noticed that something dramatic has happened and the world has changed FOREVER!!!??? That actually makes me sound egotistical that the world should stop for me (and all of us) and notice. I suppose we all have different ways of looking at it.

Best wishes Jane & hoping things progress extremely slowly for you, hope to catch up again on here, Kay 😀 x

[kendrawParticipant]

Thanks Megan & DickB

Megan, please pass my best wishes onto Phil. Things must be challenging for you guys.

I supported my partner & my best friend through a diagnosis of advanced stomach cancer last year, I felt totally and utterly devastated for him and I thought my world was going to end. I carried the ball for a while for him through some awful times. Clinics, surgery, oncology appointments and having to deal with non-responsive GPs and district nurses. Then he was able to carry the ball again for himself (which I was really happy and relieved about) and things become very difficult for us as a couple. I remember asking him if he would have been there for me if roles had been reversed. He made his usual flippant type comment that he would and I knew he wouldn’t have, not to the extent that I was there for him. It was a difficult relationship anyway prior to all that and I am not apportioning blame at all. Round pegs and square holes I suppose, they just dont fit no matter how hard you try. I had to sever our relationship in July last year as I was making me feel so unwell (or was it…maybe it was my diagnosis) I miss my best friend very much though & I will never forget the good times (even during the awful sad times) that we had.

Then in August I had a positive BJP in my urine…

The loneliness is a killer for me but I am too tired to do anything about it. My BMB was on 3rd of Sept last year and I worked fulltime thro the NAC visit and through my other debilitating health issues (which are improving) until about 3 weeks ago when I took some time off. I am still off. I felt so exhausted! I really wished someone would carry my ball for a while but that is not gonna happen. I need to get my head round that I am on my own & that is not likely to change. I have family and friends but they have their own lives to live and I would hate to become a burden on them. I have been studying mgus.smm.myeloma.Amy as much as I can but still dont feel I have a handle on it.

I need to get my ducks in a row then I will feel I can rest a little and put my diagnosis to one side. There is a wealth of knowledge here so I hope to make a plan in the next few days & any pointers anyone can make please feel free. I am gonna make a checklist but actually I have managed to tackle some things already…like ACCESS MYELOMA UK DISCUSSION FORUM lol

Megan I am in the process of getting counseling through my union, I am glad you found it useful, I think I will too. Just verbalising/venting on here has helped too and I appreciate the time you have taken to reply 🙂

Likewise DickB Thank you too. I have seen your posts on here before and like your no nonsense very pragmatic approach to myeloma 🙂

Kay 😀

• This reply was modified 11 years ago by  kendraw.

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