[suzi123Participant]

Hi all, I’m 50 and i’ve just relapsed after SCT last November and being on Lenolidamide since March this year. All a bit of a shock as now have bone lesions which i’ve not had before in ribs, hip and pelvis with the potential that my hip might fracture too. My parraproteions have shot back up to 44 and they were 49 when i was first diagnosed – they were stable about 13 since my SCT and had neve got down to 0. I’m about to go on the MajesTEC-9 trial as my 2nd line of treatment so am worrying about that, but i’ve got into my head that this will be my last Christmas and i don’t know how to stop the worry of this.

How do others cope and change their thought pattern to not think like this and what other coping mechanisms do you use when having a wobble like this?

Thanks

[rebeccaRParticipant]

Hi Suzi, Am so sorry to hear of your relapse after such a short time. I was 50 when diagnosed (nearly 62 now) and tried all sorts of things as coping mechanisms until I established what worked for me. I think it’s all centred on “mindfulness” and recognising whilst you can’t control much of what is happening to you – you are always in control if your own emotions/how you react. Easier said than done but the mind, like a muscle, needs regular flexing to help you remain in control of emotions/thoughts. There were times I felt totally consumed by it all – researching, feeling doomed etc and so I gave myself a designated 30 minute slot each day for all thoughts myeloma etc and then I mentally shut the door and locked away the key. If my mind strayed out of that time period I stopped it – as we are in control of our minds. It wasn’t easy but gave me lots of breathing space. I read positive thinking books n literally tried “turn a basket full of worries into a basketful of wishes” I had a young dtr I was terrified of having no mother – so if my thought was “I am afraid she won’t know what to do.. stuff” I turned it round to “ I want her to know how to do xyz and be independant” when I put it in the jar it seemed positive as I went away to help her build those skills. It probably sounds mad but it helped turn negatives into positive action plans. For instance “I’m worried this is my last Xmas” would, for me, be “how do I want this Xmas to be like”. We kept my myeloma very much a secret and that also gave me headspace as it wasn’t the main topic. I never wanted it to my consume my life, if at all possible. I did go to mindfulness lessons and it really helped me control my thought process/emotions. Living in the moment is very bandied around but done properly it’s very effective. I also found a signature tune that I used to blast n exercise to n always felt great afterwards. Try everything n some things you will just click with more than others.
Good luck x

[scatter05Participant]

Hi Suzi
This is a tough thing to go through and I think we all need the help of others on this rollercoaster. I have a few wonderful people who always make me feel better and sticking with your positive crew is a must. I also started writing things in a book that made me feel better so when I feel anxious I can remind myself of them to perk up. #never give up , is one! I have tried a mindfulness course also to try keep mind from wandering and to enjoy the moment. Sometimes it is the little things like reading a novel or even tiding up which help. I did a jigsaw in the summer which got me through a very difficult time but without that I may have driven myself crazy.
You have coped this far in and will do again , the horrible time now will pass and you will feel better when new treatment kicks in.

[rebeccaRParticipant]

The above is good advice – as I’ve not been on treatment for a long time I forgot the big thing I had was a little notebook of motivational quotes – often found when reading lots of positive thinking/cancer story books. It helped focus the mind back to strength/positivity. What I did find difficult – when I felt time was going to be too short – was to learn to be comfortable with wasting time ie a night in watching mindless TV. Perhaps not wasting time but just doing little things like reading a book etc. I spoke to someone else once who had to learn to be ok with just doing normal stuff rather than large bucket list stuff. I have never done a bucket list as couldn’t really think what to put on it and eventually there was some comfort/peace in recognising I was more than happy just doing normal family stuff.

[spk2021Participant]

Dear Suzi

I am very sorry to hear of your relapse and bone lesions. I was diagnosed at 59 with ultra high risk SMM which progressed to active within a year. I started treatment via a trial in January this year. I am under excellent care, and I feel being on a trial gives me an extra layer of care as I have a team of trial nurses behind me, in addition to my excellent consultant and the myeloma specialist nurses.

I am surprised to hear about your paraprotein levels and bone lesions. Surely these should have been picked up early with regular blood tests? Might it be worth questioning this?

The uncertainty of living with myeloma is extremely hard and very isolating. Reading the other responses has reminded me that I must do a mindfulness course too. ‘Worry time’ has also been suggested to me by my cancer counsellor, but it’s hard to put into practice and depends on so many other factors related to our physical and mental health.

I noticed the other day that there’s a webinar available to watch on myeloma and uncertainty which I intend to watch. Now that I’m nearing the end of my first line of treatment before moving on to maintenance, the fear of how long I’ll be in remission is increasingly rearing its ugly head.

Please remember that treatments for myeloma are developing rapidly and that there is no limit to the number of lines of treatment you can have, as long as you are fit enough to have it. In my view, participating in trials is also hugely beneficial as we receive the most cutting edge treatment via trials.

I really hope you have a supportive medical team behind you. I have 100% trust in my consultant and all the team and consider this to be vital to ease my mind.

I wish you all the very best.

S

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