[suzanne10Participant]

Hello all,
Firstly, I would like to thank the Myeloma team for their support to us all and secondly wish you all well.
I am writing as feeling very unsure at the moment.
My Father is 66, never had a days sick in his working career and was diagnosed with this horrible disease in December 2015.
He was accepted on the Myelome Xi trial and all seemed to be going well.
Unfortunately his heart took a bashing and he has been hospitalised on a few occasions. Rhythm is AF and the right ventricle isn’t working properly.
This has now blown his chances of SCT.
He has also been hospitalised for pneumonia so has definitley had a tough time with this treatment.
However, his consultant seems confident he is in remission!
He has been continuing with treatment of velcade following the hospital admissions.
My concern now is that he appears very depressed.
He very rarely leaves the house, unless it’s for blood tests/appointments.
He says he feels weak and his legs are like lead.
He seems very fixated on this disease that it is his topic of conversation day in day out. We as a family are trying to persuade him to get some counselling as he doesn’t want medication.

Sorry for the long winded post, I just wanted to give a good history and basically ask if any of you have suffered in this way?

Thanks in advance x

[johnbParticipant]

Hi Suzanne10

I am 72, currently on my 3rd cycle of VCD and have similar problems with my legs although not as severe as your father. I also suffer from occasional depression although not for long. I have had SCT which kept me in remission for 2 years.
This disease affects people in so many different ways and a positive attitude is required. I think counselling is a good idea and I would suggest you contact Macmillan who have strong links with Myeloma UK.

Regards John B

[suzanne10Participant]

Hi John,
Thanks for taking the time to reply. Much appreciated.
I will contact Macmillan also, thanks for that.
Great news regarding your remission!
A positive attitude definitely seems the key to tackling this disease. Just need to get him back on track.

Take Care,
Sue.

[rebeccaRParticipant]

Hi Sue, Your father has taken quite a bashing and to come to terms with this disease (if we ever really do) is only achieved with time and cannot be rushed. I think there are 2 ways people go with MM – no communication and keeping everything inside for fear of upsetting others or, like with all serious illnesses, allowing it to consume/dictate your life/energy. At the moment it is dominating his/your life in a negative way and this needs turning around to gain some control. I would get him some good books to read all about surviving cancer/coping mechanisms – and this should include you all. Try new things – tai chi (very good and gentle) yoga, walking, dancing…anything that sparks an interest, any form of exercise and mental techniques like mindfulness. Get him to focus on what he really wants/wanted to do in life and put steps in place now to make them happen – new hobbies/interests especially those that involve you all. There is much literature that fatigue is often depression related and even when you are tired if you go for walk etc it boosts you and raises your energy level and helps you body – so very positive on all fronts. I don’t know if he is good on the internet but you can research many success stories of long remissions without SCT so start picking up on the positives. It is important to feel as tho you are fighting back, I did this with exercise which really helped, your dad might also like to look into nutrition and food and it’s benefits (positive research not negative research). Plan days out to somewhere different so energy is directed into things that will lift his/your mood. Ask a friend to pop in for coffee to break up the day etc. You also need to be firm and remind him that this is not just his disease but all of yours so you do not want to waste your time but need to crack on and seize the day and do things that will help his body recover quicker so you can make the most of life. Be tough – it is easy to stay in the doldrums but if you can only get his focus on to different aspects of managing this disease well he will start feeling much better. Try and get him to see it as an opportunity/pass card to do what he wants in life and to crack on with it. Do not mollycoddle him in this state – tough love is required to jolt him out of this downward spiral. Positivity is the only way to live well with MM. Whilst I never discussed MM with others I did research a lot which did become obsessive so at one stage I learnt to block all MM things out of mind – if my mind wandered to it I said NO and didn’t go there and I adopted a set time each day for say 1/2 hour for me to think/read about it/talk. Perhaps he could introduce this over time and see it as a positive step to taking back control. The only control we have is our mind/emotions – we decide how we react to things, we choose whether to be miserable or we chose to whether to be positive and motivate ourselves..laugh or cry…it is in our control and our choice. When you realise this it really helps you to turn things around. I do not, however, wish to undermine physical ailments that he is experiencing but you can always do much more if you push yourself and if you push yourself you always feel better for it in the end. Good luck

Rebecca

[suzanne10Participant]

Rebecca,
Thankyou so much. Your message has really inspired me to push him more.
I have managed today to get him to phone the counselling service passed on by the hospital. This is a big step and promising.. I am also trying to persuade my Mum to go so they can get through this together instead of the tension they are both feeling.
I think I will contact his friends and see if they can get him to meet somewhere other than at home..
Lots to think about, thankyou.

I hope you continue to be well x

[rebeccaRParticipant]

That’s good Suzanne, your dad has lots to think about but is thinking about the wrong things and once their focus changes to what they really want to spend their time doing you will see their mood lift as they focus their energies on new challenges and hopefully MM will then go more to the back of the mind – but this takes a very long time/acceptance to achieve this state. This is a marathon not a sprint and throughout my treatment I always made sure my bad days were interspersed with treats – going for a coffee and a catch up – on a “down” day a cinema trip – took no energy and you can lose yourself in a film. It’s important that all the family start embracing a new mindset of living life as best you can. You will get there and you are making great progress now so don’t allow anything to slip. I went for my 3 monthly monitoring test yesterday – still ok – but I still treat myself on this day (nothing major – bottle of prosecco or a pub meal etc) and it makes everything much nicer/easier. We are a family of rewarding and indulging ourselves now and we have a great time. Take care x

[peterlParticipant]

Hi Rebecca,

Great post to Sue.  Well done!!

Sue:  hope all goes well.

Best wishes,

Peter

[suzanne10Participant]

A very well deserved bottle of Prosecco too! Glad everything went well.

Thanks again for your reply, feel very supported on here and confident I can do more now to help.

Thanks to Peter too for the well wishes.

x

[graham-cParticipant]

In my humble opinion the worst possible thing is to remain indoors facing the same four walls day after day. My mother is 93 and severely affected by osteoporosis and for her benefit, and mine too, I take her out once a week to a stately home or similar attraction. She has a collapsible wheelchair, that is necessary for any long walking stints, but I think such trips make a massive difference to break the cycle of thinking about nothing but the illness affecting and restricting you.

[andygParticipant]

Hi Sue.

I would recommend the counselling.

It’s a massive blow to be told you have cancer and then be plied with lots of pill which basically poison us. I went through a hard time after being diagnosed and it took time for me to get back to some sort of normalcy.

Quality of life for me is the main thing and as he is in remission there should be no reason why he can’t stop treatment. It sounds like he is on a maintenance regim probably as a continuation of the trial. Talk to his medics as time off drugs can be a big bonus. So I’ve been told – I’ve not been off them since diagnosis.

Every day is a gift.

Andy xx

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