[Anonymous]

Hi all

Don?t know if anyone remembers me, but I last posted on here around 12 months ago, just after my SCT in March of 2012.

I?m the blind chap that had the stroke followed by the Myloma dianosis from the Essex area.

Well my 100 day blood test was fine, along with several others, as my PP?s were at 0.

Unfortunately, my last two recent ones weren?t quite so nice. I had one done around 12 weeks ago, and it had crept up to 3, then another one a couple of weeks ago, and as of last week, it has gone up to 8.

Obviously no idea if this is a blip, or whether they will stay around that level, and I?m now in that horrible waiting game period until my next blood test in six weeks time.

Now it?s coming back, I?m completely back to that mental state of mind I was in when it was first diagnosed back in July 2011, with all those crappy uncertain thoughts that creep into your mind.

It?s that uncertainty of not knowing what?s ahead again, and wondering again if I?ll still be around in 12 months, or 12 years, it?s just crap.

I don?t know whether to carry on doing my stressful social work job, or pack it in and carry out the hobby I love, which is restoring classic cars, only doing it as a business instead of a hobby.

We don?t need a large income anymore, so it is perfectly doable.

That said, I?m also not sure if it would be a sign of weakness, i.e. packing in my job, because I?m fearing the worse.

I like probably lots of others on here, just can?t stand the uncertain waiting game, it is so cruel.

Oh, please don?t use the ?stay positive phrase?, it gets banded around a lot.

Anyway, thanks for the rant.

Terry

[sanParticipant]

Hello Terry, i am new to this as a carer for my Mum recently diagnosed and still poorly in hospital, i certainly agree this myeloma is such a yo yo illness with no certainty, its hard living with an illness when you cannot know the future, all that i can say is i worked for 34 years as a mental health nurse taking slightly early retirement, my husband supporting me to leave as he could see that we could manage and that the job was taking its toll and i could spend more time with the family, well i am so glad that i went as these last two years of retirement have been invaluable i have spent time with my Mum who was well enough for us to go out with my nephew her grandson and enjoy life before this horrid illness came along those days are now so special for us both and would not have happened if i had been working, i too thought that maybe i was taking the easy option getting out of the day job, wondered if i was doing the right thing and if i could indeed fill my time usefully, well i did from voluntary work with domestic violence sufferers to learning different skills to walking with some lovely new dog walking friends,spending time with family and friends and having energy for them, can i say that though you do a super job working in social work you also need energy for you and maybe its your turn to follow your dreams and interests, listen to you loved ones and you will make the right choices for you, restoring classic cars sounds great !!take care and i hope that all goes well for you re your bloods, best wishes San x

[DaiCroParticipant]

Hi Terry,

I remember you posting last year, as a football fan your name earned instant recognition.:-)

Yes, the waiting around is an awful time… the not knowing, the struggling to let go of the remission status and the reluctance to fully accept that you have indeed relapsed. If it is a blip then your relief will be profound… but if you have relapsed then you will more than likely allow yourself some time for bitter disappointment before facing the next step.

I won't bandy the words 'stay positive' but I will say 'be positive'. If it is 'doable', then leave your job and try something that is not only something you love doing but is also a potential business with a profit attached. Being positive is not just a state of mind for me, it is also a physical action, a task that calls for some get up and go… and your 'hobby' sounds like the perfect solution to keep your mind and body centred on moving forward… if you do that then all the other descriptions will follow in your footsteps.

I have had to face the dreaded 'Relapsed' status three times… SCT – Velcade – Revlimid and I can't pretend that it gets any easier. I suppose that the first, the SCT, was the hardest because there was no timescale attached to the remission… I only managed ten months, when the prognosis was three to six years. Even when they called it I was feeling great but a secondary cancerous tumour on my sternum validated their call… I could see and feel for myself that it was over.

So, for me, be positive and set yourself the task of only doing those things that make you feel happy… those things that allow you freedom of thought and actions, with the by-product of also giving you more time with those that you love. Stress is a bummer, it takes you to a place where you find it extremely hard to control your life… so if you can, kick every cause of stress in your life into touch.

I do hope that your PP rise is a blip… that would be wonderful… but if not then get angry, allow yourself the release from the stress of waiting and then carry out your work and personal plans in a constructive and life affirming manner. Your restoration of classic cars sounds excellent… make plans, draw up your business plan and move forward as master of your own affairs, not as an employee restrained by the dictats of a job. 🙁

I wish you well Terry, stay awhile and talk to us… there are some really good people on here, some with the same experience as you, others with experience of the treatments… processes and procedures etc., that you will need to address if and/or when, the time comes.

Regards 🙂

Dai.

[eveParticipant]

Hi Terry

We all know about MM,it is how you see it,and how it effects your life.!!!

Take mM out of the equation ,and do what ever Floats your Boat,my husband believes look after number one first,might seem selfish,but it works for him. As a wife and mother,I have different priorities ,??? Or is it just the fact that women are natural carers.
The old saying springs to mind,you work to live,these days it seems you live to work. Why ask us??? We do not know you personally ??

When you are young you make decisions without fear.when you are older you seem to loose that ability.
The only thing Myeloma does to your life is give you the knowledge that time is short.Eve

[Anonymous]

Hi again

Thanks for the couple of replies.

I guess what I was after with my post, was responses from others who had been in a similar dilemma with regard to whether they give up work or not, and enjoy the years they have left, regardless whether it it is 1 ? 5 years, or even ten years.

It?s that balancing act, e.g. do I carry on working as well as possibly and likely going through more treatment following my relapse, and carry on working possibly for years, until the day comes that they tell me that I have ?? years to live, or do I quit now and say to hell with social work, and instead just bloody enjoy what time I have left.

Like others, at this stage, I have absolutely no idea how long I may have, again, it isn?t likely to see me off in the next 12 months, but I simply have no idea how long it will be.

I?ve always been very prowd, and being the main earner as a blind person even more so, with a wife and two very young children.

As a blind person, one usually feels the need to work harder than your sighted colleagues, just to prove your worth, well, I?m now asking myself, do I really need to carry on proving myself, or can I accept taking a step back and saying to hell with it all, and doing what makes me happy, even though I have guilt attached to that, as my Wife will be the one who is now the main earner.

Silly? Who know?s, but what I do know, is that it is real for me.

I quit my permanent social work post last January, choosing instead to work self-employed from home, and have lots of work available. I was very positive whilst doing that, and felt such a relief getting out of a poisonous office environment. However, since getting these latest blood results, I?m gutted to say the least.

What am I posting for? As I said, just to hear from others specifically regarding how they dealt with their work life balance since getting Myeloma.

Regards

Terry

[tomParticipant]

Hi Terry

Yep I remember you 😀

Now work?? Now I enjoy my workplace and work Mates so I made the decision to carry on working (for me no one else) and so far its done me good, had a few dips when I felt should I but soon came back to yes I love it 🙂 .

I am blessed by working for a company that has looked after me and has sorted a job out that has no stress, heavy lifting and turn up if I am Ok.

What would I do if I worked in a " poisonous office environment" I would get out No Problem, if my job was "stressful" would I continue to do it the answer is No, I decided to surround myself with nice things and nice people those with bad Vibes can do one and that goes for my work.

Hope the Above helps Terry, and take it from me Terry I am not a workaholic, nor would I feel guilty if my young bride was the bread winner 😉

Tom Onwards and Upwards x

[HelenParticipant]

Hi Terry
I have just posted along similar lines and am in almost the same place as yourself. I still work, a huge part of my identity is through what I do, and I just love my job. It is interesting and stressful, valuable and sometimes exciting and humbling too. Without my work what will I do? I like the banter, i get a great deal of personal satisfaction from it, I'm valued … Any way if I retire?….. What will I do? I have a child at uni and one just setting off in work and relationship so no one at home, many of my friends work, I'm not a housewife by choice, and you can't be a nurse from home.
My husband is still 7 yrs from retirement and the end of the mortgage. I never had time for any real interests or hobbies, except sewing and gardening.
In a way it is easier to do nothing. Is giving up work finally giving in to the disease? I don't know, I've never given in to anything without a big fight
The dilemma as I see it is that I don't feel ill enough or incapacitated enough yet, but small things are causing me greater anxiety, so maybe the decision will soon make itself.
Uncertainty carries so many problems. Like you my optimism has been severely dented this last few weeks. I have to be pragmatic and realistic now. Face the progressiveness of the disease but maintain the hope that these new drugs will help.
I also think that if you can make an absorbing and profitable business from your car restoration, doing that might be your answer. It certainly sounds interesting.
Keep in touch
Love Helen

[MicheleParticipant]

Hi Terry

Only you know your own personal financial circumstances and whether you enjoy the job you're currently doing or not.

All I can say is that if I could afford to give up a job I didn't enjoy, I would.
The impression you give is that you don't enjoy the work you do and you'd rather be using your time up restoring your cars. Maybe you've answered your own question.

None of us with MM know how much time we've got left, but I'm mentally aiming for at least 10 years and am planning accordingly.
I've given up all work now and am enjoyng every minute of freedom to do as I please. Not selfish, just practical and life's good.

Have a good think and don't be frightened to make any major decisions.

[PatGParticipant]

Hi Terry,
I have Amyloidosis which apparently cannot be cured but can be managed. How managed I will have to wait and see at the end of my 8 cycles of VCD. Unlike you I was past retirement age but fit and healthy and really enjoyed my job working with undergraduates at Loughborough University. Initially I was hoping to go back to work once chemo was finished as like Helen, I felt my work defined who I was etc. I have had second thoughts now and have found out about U3A, University of the Third Age, which sounds very grand but really isn't. Just people who want to keep active mentally by learning new skills and pursuing old and new hobbies. I have put in my retirement notice at work and will officially retire at the end of July.
In your case I feel that you have more than proved that you can support your family, blind or not, and I am sure that your family would be more than happy to give you the support to enable you to do something closer to your heart which may well turn into a profitable business. Stress is very debilitating and will not help with the MM so you need to take that into consideration as well. This is a very personal decision for both you and your family but my advice is, if financially it is viable, go with your heart.
Love and positive thoughts
Pat

[VickiParticipant]

Terry

I've just posted on your other thread. As the others have said…..give up if you feel you can and want to. I would say don't give up something to do nothing. If the classic cars are your idea of enjoyment go for it, keep focussed and absorbed. I'm a firm believer that someone having a purpose helps!!

Go for it

Vicki and Colin x

[wendyduffieldParticipant]

Hi Terry

12 months remission is pretty crap, I had about 15 months and am now relapsing but don't need any treatment. Like you I was angry, devastated and depressed and very gloomy about the future. I have come to terms with it now and feel a little calmer.

You might want to check out my blog post about relapsing when I first found out. I was pretty angry!

http://wendyduffield.wordpress.com/2013/01/22/hello-relapse-goodbye-remission/

With regard to the work issue, I returned to work two months after diagnosis with some time off during treatment and a couple of months off after my stem cell treatment. My first reaction upon finding out that I was relapsing was that I should stop working as I could not bear to spend whatever time I have left working. However I am going to wait and see how things go as when I need to start treatment it is not as if I can do much else and going to work pays for the holidays! I also have to consider what else I would do as I have not got a real hobby or passion that would seriously occupy my time whereas you have a wife and two young children and a hobby which you really enjoy. My advice is that if you can afford not to work then you should stop and spend time with your family. It sounds as if you are freelance so maybe another option would be to reduce your hours as a compromise?

I wish you well in whatever decision you make.

Wendy

[CarolBradley1Participant]

Hi Terry
I have only just seen your post because I have been "out of things" for a while – chemo etc. getting ready for the second transplant having had the same rotten news as yourself. I don't blame you for being bitter but at least they found it early – mine seems to have becomr non secreter (not sure if that's exactly right)so the urine tests etc didn't show the pp rising alarmingly. It was only when I complained of terrible pain in my groin, back and ribs they did a bone sample and found that my marrow was 97% myeloma cells so you can see that I was extremely relieved they got me onto chemo within 48 hours and I'm still here although quite weak and anxious as to the coming months.
I do understand how dificult this is but I do hope that by now you might have some more definite news which will help you plan what happens next.
Very best wishes
Carol

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