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Hi all
its hard to stay positive and focused when all we have been doing is this during the treatment. When the treatment stops and we are in remission, where do we go from there? I have wrestled with this and finally concluded this is as good as it gets so I may as well enjoy it whil it lasts and embrace life. I remember the times in hospital, the chemo days, the infection days, the SCT weeks and then I look at the sun shining, being back playing golf, going to ,settings, actually walking up escalators and I think that I’d rather be doing all this than be in hospital. So the answer for me is to go and grab life whilst we all still have it. Take advantage of the remission whilst it’s there. When we all relapse then we can think back in the memories of enjoying life and make new objectives to enjoy it again.
So take advantage of remission, get out and do things you may not have done before. Be bold, be positive. Embrace the life you have, do it now as tomorrow or next week, month, year, you may not feel up to it.
Good luck everyone 😀😀😀
B.
Like your attitude Bernard, for some, post SCT can be an anti-climax but for most it’s another chance. Whilst we will never be wealthy enough for me to take early retirement or just not worry about finances, we have totally reassessed what is important to us as a family and me as the inflicted. I’m afraid I don’t have much patience with those who do not embrace their 2nd chance, there are plenty on this website who have suffered severe bone damage or kidney failure and yet still embrace life. Onwards and upwards as Tom would say.
morning richard i so agree im a year in remmision enjoying all the good things in life sometimes the simple things like you say our family values are so reasessed i olso. cant worry. about next monyh or next. year. im. livving. verry much in the here and now simple things like a walk along the beach at south shields or a lunch in the boathouse fill.me with. joy bye the way. how is tom. never see him on the forum these days. keep on. smiling everyone
Hi, it is interesting reading this thread again with an extra year on and my hindsight of it all is that we are very ordinary people faced with a gargantuan extraordinary challenge and we start it with the normal mindset for a battle – you lose or you win and are victorious. We all set off totally focussed on positivity and focus on sct/remission – the win. When we actually achieve this it doesn’t have the “feel” we expect…Hurrah we’ve won, the Giant is dead type of thing because.. the Giant isn’t dead, just sleeping – yes we have raised the barricades but merely postponed the battle. This is when battle fatigue kicks in for a while and this is perfectly normal. As with the initial diagnosis when it can take some months for it to really sink in/gain acceptance- it equally takes time now for the summation of “marathon not a sprint” sink and be embraced. Herein lies the tricky bit – recognising and accepting you will be never be that person pre-diagnosis again and that trying to be leaves you wanting. Helen Keller said “When one door of happiness closes, another opens, but often we look so long at the closed door that we do not see the one that has opened for us”. I think this is where the problems arise – we try and rush back to work, go back to normal and put it behind us but this can only bring denial and unhappiness. What we need to do, with time and respite, is recognise this is life limiting and make choices on how we want to spend our time with this knowledge – tread water and bury our heads – or make big choices and further changes to ensure out lifestyle, dreams. family have the best deal we can muster. When we instigate this then we are ready for the marathon. It always saddens me when people rush back to work etc whilst understandable we can all live better with less money and more fulfilment and joy in life.
Rebecca
Hear hear. Well said.
And for for those that can’t find that energy for life, don’t beat yourselves up as that won’t help. Try and find it bit by bit. I was lucky to be offered free councilling at the hospital I was at (given the fees I’m sure it wasn’t free!) and this helped a bit but I realised after 3 sessions (I was entitled to 8) that I had the answer within me, which was to embrace the life I have, not the life I wanted or had before. It takes time to recognise this and I’m sure we are all different but try and reach out for it as you will really kick yourself when you are back in hospital when this nasty disease is back. Yes we are all told it will return and every quarter my anxiety spikes as I wait for my blood test results but what will be will be. Worrying won’t change the result, so live life as best you can.
Hello Rebecca
A good post, showing depth of understanding of life choices so we live life and not look back or forwards with regret. we make a decision to have a treatment and then need to accept the outcome without regret.
The issue, as someone who was from the start accepting of the diagnosis, but wanting detailed involvement in decisions about treatment so I could carry on for a while longer my necessary role which I fully knew would have to change, as it did. It is not necessarily how I would have wished things to turn out, but life is that and I have few regrets. Where I am today I know well I would not have managed to continue with the responsibilities I held- a realistic assessment.
Like you I think work and earning money for a continuing a ‘lifestyle’ not necessities is all too common, and without family / spouse support, or resources, to make giving up work a real decision people rush back to avoid reality.
Also I note many seek the holy grail of CR /sCR, which not only few achieve, but by the very nature of this disease is that it never completely goes away and comes back, so this too is a form of denial. We have a choice, living each day as well as you can doing, within your new limitation, what you need or enjoy takes away anxiety about the future. But one has also to accept death as a part of life, at any age, and that in our society is still something not much discussed. Actually my thinking around these matters is rather complex due to the philosophies I have studied. I am the master of my mind not its servant!!!
Dusk
As a smouldered, I share your worry. I think that due to the incurable nature of this disease, we all worry about when/if it will strike. I’ve convinced myself that we are just the same as everyone else. After all Cilla Black, Charles Kennedy and Bob Crowe didn’t know that they would meet their ends so soon. There are no guarantees for anyone. Our disease just means that thoughts of illness are more prominent in our minds than others. Rebecca -as a 42 year old with children who still like me to tick them into bed at night and who scream mum every time that they have a tummy ache, I find myself envying elderly people in the myeloma clinic. I still pray to manage to achieve another 10 years at least. Meantime tthe washing, ironing and dusting still eagerly await my attention. Yes, life goes on and I remind myself to feel grateful to be feeling physically healthy and strong.
Hi Folks,
I know this is a little clichéd, however I have the quote below on my wall in my office at home and look at it every day. I compare this quote with the struggles with treatment pain and worry which we face, but bravely continue on, no matter what myeloma brings.
“Let me tell you something you already know. The world ain’t all sunshine and rainbows and it will beat you to your knees if you let it. You, me, or nobody is gonna hit as hard as life. But it ain’t about how hard ya hit. It’s about how hard you can get hit and keep moving forward. How much you can take and keep moving forward. That’s how winning is done!
The film buffs amongst you will know it’s from a Rocky Film.
Kind Regards
Scott
Hi Scott, thanks for that I will add it to my collection. When I was first diagnosed and read everything I could about cancer/management/mind stuff etc I started collecting quotes and now have a little book full of them and whilst, in remission, the urge is not there to constantly refer to them I certainly did throughout all treatment and it really increased my positivity/feeling of strength – I still collect them and know I will use them again. Glad you are doing ok and really hope the allo will have don’t the trick for you.
Rebecca
Wow I could have written this post myself. I had my SCT Oct 2015 and am having weekly blood tests as Paraproteins still traceable. So far they remain stable but each month when I go to clinic for zometa and pentamidine, I dread the appointment with consultant in case I’m told the Paraproteins are rising, despite being on maintenance treatment. Like you I’ve been very positive over the past year since diagnosis but this stage is a whole new phase and in many ways more difficult to cope with. I’m sorry not to be able to offer much advice since I seem to be going through the same issues as you. Perhaps counselling is the way forward. xxx
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