[rebeccaRParticipant]

Hi Dawn, I know what you mean and did say it is now only as results are Ok but I am expecting a blip and feel quite calm about it. I have always believed, more or less, that your when your number is up it has always been pre-ordained. I was told (later) I was a day away from death when I was in hospital on diagnosis and so I feel that wasn’t my time then. All the books I read were the listing you gave me to read and whilst some were heavy going I gained a lot from some – particularly liked the more scientific books which you recommended. I should have added on the list of “useful” things to try – meditation – but I can’t get the hang of it and swapped it for an exercise class which helps me more. Whilst on treatment I did find a yoga DVD useful for calmness and also the breathing techniques of it. I swear by the breathing techniques for things like BMB, hickmans insertion etc as it becomes so calming and anxiety just brings fear and heightened pain. I hope your next treatment goes well, fingers crossed
Chrissie, I know you will get there for the sake of your family and your own sanity – all early days. Yes, death is a certainty for all of us but never focussed on but now we need to take the good things from focussing on it ie. what’s really important in life – a day playing with your child or a day “bottoming” the cupboards (extreme example here!) and then blur the edges of the focus. Since diagnosis and ONLY because my kidneys are shot I have always felt that death sits on my shoulder but at the moment it sits there like an old friend and is quiet but I now always carry the burden of him sitting there but the quieter he is the less I notice him – but I am also aware that I am the one who wakes him up and I am the one who sootheS him to sleep.

Rebecca

[HarmonyParticipant]

Hi Rebecca, you’re so right – it’s about us taking control of our emotions so that we ‘choose’ to focus on the positive. I’m so sorry that your kidneys are not working- the thought of this saddens me.I guess we have to hold our fist up and shout ‘F.. You Myeloma! -I’m living my life despite your best attempts to wear me down.’ I probably shouldn’t be thinking such thoughts as a practising Catholic…

[rebeccaRParticipant]

Hi Chrissie, sorry a tad exaggerating about my kidneys they are at gfr 27 so I have a little bit to play with but it does mean infections or pneumonia are much more serious and could wipe them out – it will be the kidneys that get me I think not the MM. I am not on dialysis and they do not appear to personally affect me yet tho’ my body will eventually take the toil of poor function. What it does mean is that I cannot wait for long when it comes back as my particular MM affects the kidney even in very small numbers and it also means strength of chemo/options are compromised and trials are out of the equation but..who knows what will happen I have lost the desire to focus on it all – overdosed on it and don’t want to go back there. I have to say, in reality, my life is exactly the same with what I do play a lot of tennis etc and don’t feel any different even tho I know I have underlying conditions. In a sense some of my QOL has improved in that I have reduced work and treat myself and make sure we have a lot of family time doing things – that is more of the focus now and I think if you do things that make you happy you will be in a state of happiness despite it all – petty differences never bother me now – so trivial in comparison to the great scheme of things – don’t get stressed over my daughters bedroom looking like a tip – I just close the door and then go in and do it all when it gets too much! things evolve in time, a lot for the better – and these are the things we can control. I have decided I am not at all religious now and intend to arrange my funeral some time in the future and have a humanist one! that’ll be a surprise for everyone! I knew I wsn;t religious when I didn’t pray to god aat he start of this journey and as I encvountered such lovely people and their families in the wards I wondered how people could continue with their religious beliefs but I’m glad you gat comfort from it.

[HarmonyParticipant]

Hi Rebecca,
I am relieved to hear that your kidneys r not as bad as I thought. None of us really know what will take us at the end- could b myeloma and its impact or a bus could run us over!! Like you, I recognise that human connection is the most precious thing of all but my faith is a source of peace and comfort for me. I’m not one to throw it down other people’s throats as I strongly believe that everybody has the right to choose what they want to believe.

Our outlook towards life definitely changes but this is inevitable. My daughter bought some turtles recently and it did cross my mind that they r likely to outlive me! Last year, we celebrated her birthday 3 weeks after my diagnosis and I spent hundreds on her – she was astounded. I think that this was my way of apologising for causing her future heartache. My kids are lavishing lots more love and affection and plently more ‘I love yous’ -which is a positive outcome, I guess!! (They dont know about my MM)

[rebeccaRParticipant]

Thanks Chrissie, you are giving your children the best possible childhood and that is being swathed in love and stability and if things change in the future then they will cope because they will have a deep sense of love and worth and grounding that will see them through any tough times. But don’t be too pessimistic you are at the smouldering stage that can last for many years (and why should it not be so for you?), you are monitored so you will commence treatment before damage is done and you are young so you have more options than SCT – Allo – and you have the advantage that by the time you need treatment even more research and resources are at your disposal. You will see your kids through their childhood and adolescence. The people who post on here are a small number in the great scheme of things, most on treatment, hence the focus, some seeking support because they have undergone a number of options – the ones who are in very long remissive wouldn’t really bother to post because they are just getting on with life. I have met a lady in clinic who’s had it for 12 yrs I think CDT gave 7 yrs remission then something else gave 3 then velcade gave 2 and she was going back and trying an older treatment. I have read of a high risk of “aggressive” mm in remission for 7 or 9 yrs can’t remember which. Statistics are one thing but we are all individuals with a very individual disease so who’s to say you won’t grow old and penniless because you spent all your pension money having holidays and enjoying life thinking you wouldn’t need it for later?
Rebecca

[kpParticipant]

“so who’s to say you won’t grow old and penniless because you spent all your pension money having holidays and enjoying life thinking you wouldn’t need it for later?”

This is very true Rebecca, thank you for a smile moment on a damp and dreary morning.

I think we should all live our lives to the full and enjoy every day.

I try to ignore the worm in my head that insists on reminding me of my diagnosis every day as soon as I wake up and trys to unsettle any feeling of well being I achieve  being normal with my family and friends (not easy though is it?).

As Spock would say “live long and prosper”

Karen

• This reply was modified 10 years ago by  kp.
• This reply was modified 10 years ago by  kp.

[docmikeParticipant]

Dear Karen,
I may have misunderstod your consultants views or your interpratation but having monitored the internet for the past 6 years on myeloma I have to disagree; reality (in the uk at least ) is way behind the information about progress in myeloma available on the internet.If I needed treatment soon there is fifty percent chance it would be the same treatment I would have been offered 6 years ago ,despite 3 or 4 new therapies that have been developed in that time which are available in the usa .Information empowers patients and quiet rightly so ;and yes I am doctor who is saying this because I realise that if you know where and how to look on the net it is possible to learn as much theoretical knowledge as your doctor. eg There are free videos of major presentations at important Heamotology conferences (ASH) which can put you right at the cutting edge .
Mike

[kpParticipant]

Oh dear Mike, the most likely explanation is my misunderstanding and misinterpretation of what was actually said to me…I still feel like a rabbit in the headlights and so dis-empowered when I go in for a monitoring appt so probably mis heard.

Thanks for your response, it is much appreciated.

Kind regards

Karen

[rebeccaRParticipant]

HI Mike, I totally agree with what you are saying and wondered how you see it panning out for us now with the change of criteria for usage/and the Cancer Drugs Fund changes? Been mulling this one over reluctantly as a lot of patients are excluded from trials due to various reasons.

Rebecca

[HarmonyParticipant]

Hi Rebecca,

I think that we should all throw a party in twenty years time when we’re old and penniless so that we can celebrate poverty! Your optimism is infectious and I’m working hard to be upbeat so thank you. Today, at this present moment, I feel and look healthy. Tomorrow is way off in the future.We all have to distance ourselves from the edge of the precipice and it’s bloody hard work to do so. Can you believe that pre-cancerous me made a big fuss about turning 40 and feeling old – seems so superficial now!x

[Author]

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