This topic contains 14 replies, has 8 voices, and was last updated by 
Sal 10 years, 3 months ago.
Good morning, Just wondering if anybody has any tips for switching the mind off. I just want to stop thinking about my condition and continue with my life but thoughts of this are on my mind- even though I may be laughing and chatting on the outside. I’m thinking of trying yoga and medication. I know that I should enjoy every moment of feeling well rather than dwelling on this thing smouldering inside me but it’s so hard to stop the thoughts. When my son cuddles me and tells me that he loves me, I feel sad for him. When my daughter asks me to help her with her hair, I worry about who will be there to do it in the future. The consultant is supposed to be referring me to a counsellor but I’ve already waited for nearly 3 months- despite chasing it up. I have days when I can keep upbeat and other days when I have to consciously fight the down feelings.
I’m a carer and I know how you are feeling. Frank smouldered for 7 years. I always had this scared feeling in my stomach. I went to a counsellor and it really helped me. I don’t know why it’s taking so long to see one. I went to the Macmillan centre attached to our hospital and talked to someone there and told them exactly how I was feeling. I got to see a counsellor and was with him for many months. He really did help me. I had to go back again about 2 years ago as the old feelings where creeping back in. Once gain it helped. As I said I’m not the one with MM so I can only imagine what the patient (including Frank) go through. Maybe someone else will be able to help you, but I would torture them till they get so sick of listening to you they will get you an appointment
My best wishes to you and hope you will have a great Christmas and a healthy new year. Long May you smoulder
Love Jean x
Hi Harmony,
I am also, like Jean, a supporter, it is my husband Phil who has Myeloma. I also found counselling very useful, I initially went when Phil finished his first line of treatment and just before his stem cell transplant. I had another five sessions this year as I was finding it hard to deal with everything even though Phil was off treatment and doing well. Both times I went to my local GP and he referred me to a counselling service in our area, the referral only took a couple of weeks both times. Counselling has helped me enormously but I still find it hard to turn the worries off, my counsellor has helped me to find different ways to deal with these worries though so that don’t take control as much anymore. Yoga and meditation are also good ideas, everyone needs to find what suits them best.
The most important thing to remember is that everything you are feeling is normal and to not beat yourself up about having these thoughts just try to not let negative thoughts stop you from enjoying the here and now.
Megan
I’ve just gone through a really tough period as I’m facing periods of testing to assess the success of my SCT. I find meditation really helps.
Me and the wife are going for counselling in the new year too.
Thank you all so much. I’ll make an appointment with my G.P to be referred for counselling. The fact that the counselling hasn’t come through makes me feel a slight lack of faith in the consultant – I accept that this could be irrational. I spoke to her secretary a few weeks ago to chase things up. I’m under Queens hospital in Romford.
I’m definitely going to try Yoga in the New Year as I need to do something. After telling close family members (apart from my children), colleagues and a handful of friends about my diagnosis, I’ve decided not to tell anyone else. There are some friends that I want to keep things light-hearted and silly with. I don’t want to be defined by my condition – I just want to be me. I now regret telling some people. I guess that when I was first diagnosed, shock caused me to open up too much and now it has changed things with some people. It’s subtle changes, like the eye contact that’s a bit too brief. Once again, thanks for your reassurance.x
Hi Harmony,
i’ve just joined the forum and hope you don’t mind me offering a suggestion. Have you heard of Mindfulness? It is aimed specifically at enabling you to have control over thoughts and to “rein in” those trains of thought that can cause distress. It helps to focus on the here and now rather than the unknown future. I’m really lucky in that my local health service has a self-referral system for all sorts of courses and I was able to go on a free 6-session course. There is quite a lot of information and some free podcast are available on websites. http://Www.oxfordmindfulness.org is particularly good as it has a research base at Oxford University.
Mindfulness has its roots in Buddhism and some Buddhist centres offer open courses. You may or may not wish to include a religious/spiritual dimension, but you need to be aware that different courses will include or exclude this.
It might just be worth looking into as it would offer you something long-term, and could work well alongside counselling. It’s also something where you feel you can regain some control and that can be helpful in itself.
Best wishes,
Sarah
Thank you Sarah. I’ll do some research. I hope that you are keeping well and wish you a positive New Year 2014. How are things for you?
Other people can be tough to deal with. I regret now that I didn’t take time off work after my diagnosis as I went in when I felt vulnerable and weepy. I now regret telling people. Today, I was working at a computer when a colleague started talking about her mother’s death (from another illness) when she was a child. She talked about the importance of creating a memory box to comfort children. I was stunned when she turned to me and said, ‘have you thought about doing this?’ She then proceeded to tell me about her friend who died of cancer in a hospice. I felt really upset but didn’t show it; my children are my Achilles heel and the thought of leaving them devastates me. I simply answered by saying that I hope that things will be more long term for me. I know that she wasn’t being malicious but the time and place for such a discussion was so inappropriate. I like to believe that this disease is chronic rather than a death sentence.
x
Hi again Harmony,
I’m so sorry you had this experience with your colleague. I’m sure she meant well but it was hugely insensitive.
It’s my husband who has just been diagnosed with myeloma, so my experience is and will be rather different from yours. It wasn’t a bolt out of the blue really as he had a plasmacytoma diagnosed in April and has been in hospital 3 times since then, and backwards and forwards to all sorts of appointments. We knew from the beginning that it could develop into myeloma, but you always hope that it won’t happen, especially as he is only 44.
I really hope you can get the counselling sorted out soon. Do ask me if you have any questions about mindfulness. I’m not an expert by any means, but it really helped me at a time when I was finding things difficult.
Sarah
Hi Sarah,
Sorry to hear about your husband- sounds like you’ve both had a very tough time. I know how harsh the diagnosis can seem especially when the disease is more common in older people. I’m only 40 with smouldering Myeloma so it all feels a bit freakish. Let’s hope for all our sakes that they find a drug which will make this a chronic condition that we live with – just like diabetes or hypertension. We always have hope. I’m going to be proactive by doing some research and phoning the consultant’s secretary (again) to chase the counselling. For now, I’ll absorb my mind in thinking about what to cook my kids and husband for dinner. No matter what else is happening hungry children still need to be fed and get help with their homework!!
My wife has found it more difficult to cope with this than me. She became dependent on alcohol. Fortunately the local cancer centre – Southeast cancer help centre – offered various therapies etc for carers as well as cancer sufferers. She has had hypnotherapy and counselling and thank God it seems to have worked. I’ve been worrying so much about her that I’ve hardly thought about my problems.
Good luck and try to stay positive.
Scott
Hi Harmony
I do not know much about counselling as I chose not to take that root,I am a firm believer that unless you have had the same experience how an earth can you help some one,there are very good books on dealing with people who suffer a trauma.
As for telling people or not to tell is a hard one,try not to have regrets about it,people will always have opinions on things they have no experience of. If it was me I would remove myself from there presence very sharply.walk away ,unless there thick skinned they should get the idea.( I have been told I do not suffer fools!!!) but that’s the way I would personally cope,you have to do what ever is right for you and no one else.
On the subject of smouldering myeloma,Jean has given you a good example hubby got 7 years,some people get far more,some people never get full MM.some people progress very quickly.worrying about tomorrow is spoiling today. No one knows what the future holds!!!!
Do what ever you need to do,to obtain peace of mind.
My husband looks reasonable healthy,so any one who says how are you he says fine,if you go to the American myeloma beacon and look on opinions,there is a man there called Arnie he is a MD with MM and he has written a good article on people’s attitude to his Myeloma. Worth a read.
Hi Harmony
First off you could smoulder for years yet so try not and jump the gun. It’s easy to say but hard to do but you’ve got to live in the present not the future. As Eve says worrying about tomorrow spoils today.
I have no experience of counselling though my wife went and found it very helpful.
I was diagnosed in oct 2011 told MM was very treatable but not curable. Well my MM proved to be awkward and has proved difficult to treat. I’ve now been on full chemo for over 2 years now as they struggled to find a drug to work for me. I ended up on Revlimid for nearly 2 years but that has failed now and I have just started on Pomalidomide fingers crossed that works.
My attitude is take everyday at a time. I know what’s coming I just don’t know when. I found when I was first diagnosed the more I talked about MM the more comfortable I was with living with it. It gets it straight in your head. I think the mental side of MM can be harder than the treatment side initially.
I never smouldered and don’t have children to worry about but even though I’ve never gone through counselling myself I would recommend it to you. I think it will help you focus on the things you can influence and hopefully try and ignore the thing you can’t influence.
I hope you stay smouldering for many a year.
Every day is a gift
Even in the rain
Andy xx
Hi Andy,
Thank you for your kind words. I’m thinking of you – I hope that the Pomalidomide works, I’ve read that they are inventing new drugs all of the time for our condition so I’m sure that the drug which will work for you is just waiting to be matched to you! This satanic disease is so unpredictable and that is the curse of it that we all have to live with.
You must be a very strong person to have managed without counselling so far or do maybe women just naturally need to talk more. NHS counselling seems to be a nightmare – I’m still waiting but, in the meantime have followed Sarah’s recommendation and I’m reading about ‘Mindfulness’ techniques and trying them out. I’ve now found peace and comfort at night through prayer and ‘Mindfulness’ techniques-
although I fear that mixing Buddhist principles with Catholicism may not be the done thing! Mind you, I’ll call on every religion at the moment. On Wednesday, I’m going for more blood tests prior to my appointment with the Consultant in three weeks time. I’m trying my best to avoid becoming a jittering wreck before then!
Eve- thanks for your positive words. I wish your husband strength, courage and peace for 2014.
Thank you Scott. I wish you well too.x
Hi again Harmony,
I’m pleased you’ve found the mindfulness techniques useful. They emphasise that it is a practice and you have to keep practising! One of the key principles I learnt was to be kind to yourself if you don’t feel you’re doing it very well and look at the way your mind wanders with a kind curiosity.
Don’t worry too much about the Buddhist roots of mindfulness. What is out there now, particularly from the Oxford Centre, is in no way religious, but I’m sure could be used alongside any prayer and meditation you might practise as part of your Catholic faith. I’m a Christian too and I don’t find any contradiction using mindfulness . I think it should really be acceptable to people of most faiths and beliefs as it’s not trying to change what you think, just to allow you to have some control over the thoughts than run through your head like wild horses.
It’s such a shame that you can’t get going with the counselling. Have you tried to find out whether there is another counselling service in your area that works on a not-for-profit or charitable basis? It maybe worth checking out at your hospital if there is anything available for cancer patients. Our hospital is only a regional general hospital one and doesn’t have a cancer centre, but there is a Macmillan information point and they advertise all sorts of things. The specialist hospital where my husband had radiotherapy last year has a Maggies Centre and they offer counselling.
I hope you’re having a better week.
Sarah x
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