[duskParticipant]

I am posting this noting how many of us diagnosed with MM have to ‘relearn’ how to live our lives in the face of uncertainty.  As someone who was not phased by the diagnosis, it is because of my philosophical attitude to things we cannot really control or influence very greatly because they are not in our hands to do so. I focus on the changes I can influence

I would recommend meditation and learning to live in the present to all MM suffers, without thinking of the past or the future- this allows you to get on with life and do what you need, however low the treatment leaves you.

For those who complained I did not tell them anything about myself, I decided to post this because on a number of occasions recently people dealing with me have described me as inspirational and I have to say it is not how I see myself.  I am a ‘get on with life’ and if necessary ‘challenge the system’ person. I aim not to dwell on my illness, although now considerably disabled and unable to do things I could only a few years ago. Yes I get frustrated but in many ways I am much more fortunate than others and I know it.

I started treatment and got the Velcade I sought for inclusion in front line combination. It did the trick I expected / hoped after one cycle of chemo and I hope continues to do so as I move onto cycle 3 soon. But My journey has not been smooth 25% of the time during my first two months was spent in hospital as I seemed to have problems with the chemo each time.   I feel sick most of the time and my energy levels are declining- but that is par the course.

The 19 year old Stephen Sutton is the inspiration for me and used every minute of his short life using all the energy he could muster- I am humbled by this and hope we can all take inspiration from this.

What I perhaps left out are things about my own personal circumstances are very different to any one I have seen posting on here. I do not wish to be identified as the internet is not in my view the appropriate medium to give your life to strangers. My situation is unique, complex and difficult- the MM has been the addition complicating it.

 

• This topic was modified 10 years, 6 months ago by  dusk.

[PhilipandfionaParticipant]

Hello Dusk

I am sorry to hear of your problems you’ve had along the way. And it’s such a shame any of the MMers hvae to suffer at all.

I would endorse what you have said. I find it very strange to have friends and colleagues tell me and my husband that we are amazing. We’re not, we’re just trying to live with some degree of honesty and normality in what is far frm a normal world now. He’s the one with MM but we as a family are dealing with it together.

I think it is only when you are faced with something awful that you learn what you are capable of. I beleive that most people, if put in the same situation, would deal with it in the same way. Most people are, however, fortunate enough never to have been put to that particular test, so don’t know how amazing they probably are.

My husband has just started a course on mindfulness to do exactly what you say, focus on the now. I very strongly beleive that there is no point thinking what if, or focussing on what cannot be changed, but concentrating on that over which you have some control.

I would hope that we can all recognise a bit of that wonderful young man in those around us, to try to face this terrible disease with some humour and to make the most of a bad situation. I bet he thought he was only doing what he could.

As my sister says, when life gives you lemons, add gin, tonic and ice.

[Author]

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