[richard48Participant]

Hi Angela,

Glad all good with Graham. It’s great that his treatment worked well first time and I’m positive it’s doing the same for me. We too were in Oldham on a Monday- start of cycle 3. Seeing the main man next week with some good results I hope!!

I’ve been told I’ll be going to MRI for my SCT. The isolation room sounds interesting- I suppose to keep infections away. Lynn has been looking that up in preparation for my time even though it’s a while off. By the way thank you for being in touch with Lynn on email etc. It’s really good for her and she won’t mind me saying that when she reads this.

It’s also pleasing to hear Graham has gone back to his class. Hopefully he’ll be doing more soon as well as preparing for your 60th.

Hope you have a good day/night!

Thanks again Angela. Will keep you updated – one of us will.

Best wishes to both of you.

Richard

 

 

[richard48Participant]

Thanks for the reply Adrian. I certainly have a good consultant-the same as Angela’s husband! He’s thinking of at least 6 cycles and my proteins came down to 7 a few weeks ago. Waiting for another result next week. Hopefully even lower after 3 cycles. You’re right about infections. Managed to avoid them even with going in to school a few times. Although I was pulled in by the registrar on Monday as the infection levels had gone up in my bloods. I have had a cold but nothing else and she checked my chest and asked the usual questions. Luckily they gave me the jab of Velcade-phew!! I’m still on the FB site and it does help me but I can see why sometimes it gets a bit much and that’s not just from the sad stories.

Thanks again Adrian. I’ll keep you updated Good luck and best wishes,

Richard

[richard48Participant]

Thanks Rebecca. Still going well although back playing up a bit now. Hey ho. Not stopping me doing anything though, but I’ll have to pass on the thought of paragliding. I bet that was great. Maybe one day for me.

Adrian-how has your treatment gone? I hope it’s doing the job. Has your consultant said how many cycles you may/may not have.  Mine has said at least 6 but could be more before the op.  I agree with what you say –  you just have to get on with it. I think dwelling on things negatively will make it more and more difficult, and I’ve read a few posts like this sadly. Positivity is essential, no matter how hard it is at times. Hope your Support Group went well.

Richard

[richard48Participant]

Another week done and another set of meds – all looking good so far and not too many side effects! I quizzed Dr Allamedine about all the numbers and they just about made sense-trying not to get too obsessed though. Just full of a cold even without going in to work or being in contact with others. I can live with that for now, and following this and your advice I will continue to stay at home for now when it comes to work. I can still do some.

Thanks for your emails again by the way. I am a bit more relaxed and focused about things now, and eased off the worry of the effects of having a pint or two which I did last weekend, and it felt good. I’ve also been to the Bury Cancer Support Group this week and despite them having to move venue because of their flood they are doing everything they can to support their users and offer complimentary therapies in a new place across the road, which is great and very relaxed.  I left out the Bury Myeloma Support Group meeting-we went but I couldn’t go in – too apprehensive and not sure what to do. I can see where your husband was coming from Angela, but like you say there is loads of info on the website – I’ve downloaded pages and pages. We will go to one of the Myeloma UK national meetings hopefully though.

I’ve also managed to get to a yoga session (absolute beginners) which was a struggle and not usually my thing but again it helped and took me away from my current thoughts. Gym wise I’m  still holding fire until I get rid of my cold or other things fixed.

All in all – a good week of trying to live life differently but normally at the same time.

Thanks again,

Richard

[richard48Participant]

Peter – a man after my own heart! I suppose as it’s early days I am still very cautious about various things (alcohol) but still keeping up the positive mental attitude. Mind you I had a beer this afternoon whilst cooking and watching football. A regular Saturday pastime when we don’t go out. It did feel good and right so I’m sure I’ll be doing more of this and other normal things.

A lot of what I manage to do – work, play, normal stuff –  will depend on the effects of the meds  etc but even when I struggled the other week I didn’t let it phase me and did what I’d planned to do, even though it was a struggle – all part of my master plan to make sure I beat this. I also have a lot of support from friends and colleagues as well as my wife Lynn who have told me that I will get through it all-PMA from all sides.

Thanks for your support Peter. I’ll be in touch. I’ll let you know when I move on from one can to two or more!!

[richard48Participant]

Hi Everyone.
Thanks for your messages and for your kind words as well as your stories.  I’m staying positive all the time – as much as I can be anyway. Had my second dose of VDT today on cycle 2. Consultant was pleased with how things should go as nothing else found from bone marrow sample, apart from the usual nasty stuff which is causing the problem but he tells me is  normal. By the way Angela – Dr Allamedine is my consultant and in the short time I have known he puts me at ease every time. Today we weren’t officially down to see him but he came and took us in for a chat to see how things were and then gave us the updates.  Made sure I was still drinking lots of water-3 litres but I tend to try and drink at least 4 or 5

One really good thing about my treatment is the improvement it does give my back. I could live with the pain before the diagnosis but it takes another big thing away and raises my positivety levels even more. My back pain in the past has always been sorted out  and gone away but for the few weeks before diagnosis I noticed this pain was a lot different and with it being more in my pelvis I just couldn’t work out how I had done it or where it came from- now I know. My chiropractor said it was probably from not doing enough stretching and slouching too much.

I haven’t been to the Bury group yet-first meeting is on Monday but I have a treatment day so may not make it. Perhaps I’ll see you at the next meeting in February Jill. We were going to go to the Bury Cancer Support Centre but sadly they are closed as they had a flood on New Years Eve. Lots of damage done. So I’ve booked in for a meeting at the Oldham equivalent next week – to talk about some alternative therapies/counselling which will be useful I hope.

As for work I’ll probably do what you suggest Dean – see how it goes – day by day. I did quite a bit the other day from home and it was good to use my brain in this way and actually forget what is going on inside me. A lot of my colleagues have said I should forget everything about work and they all mean very well which is great but I feel that when you’re on the other side it is about trying to feel as normal as you can and if a bit of work is needed for this I’ll do some. But this could change if I have a bad day like last week. Forgot to mention- had a temp spike and had to go to  A  and E. Luckily I was given some fluids and antibiotics and then released on the same evening as temp went down. I knew something was up as I was so lacking in energy pretty much all day.

Thanks again to you all. Best wishes and good luck you all too.  I’ll be back on again soon.

Richard

• This reply was modified 7 years, 10 months ago by  richard48.

[richard48Participant]

Thanks for getting in touch and for giving me an insight about your experience Rebecca. It’s a big help to hear this and has put me at ease massively which I’d like to thank you for.

I suppose I’m still at an early stage of things and still trying to get my head round it all. One thing is that I am staying positive-as well as I can be anyway, although yesterday’s Christmas festivities were very low key – I ate a lot but only had one small glass of wine. From someone who likes a few at the weekend and during time off it was a bit of a shock. I kept thinking – if I drink will I go backwards, will my kidney levels start dropping again etc etc. But at the same time I just wasn’t in the mood. One consolation was waking up this morning on Boxing Day without a sore head, but the difference is that I feel very weak-not sleepy but just weak. I’ve read that this is probably/possibly an effect following the VTD a few days ago?

I do have a really good family and supportive friends and I have been open with all of them about my situation, and I know they will be with me for the long haul although I worry about my wife. She’s been a rock, still is but I so think she needs to off load too, so hopefully we can sort something through the Myeloma UK site soon or through Macmillan who check in with us each time I go for treatment, which is good.

Can I ask you about how you carried on with things in general during your early treatment days? I’m a teacher by trade and love my job, but my role in school will be a real struggle, but I want to do as much as I can, even if I’m doing stuff from home or out of the classroom. Did you have to take a lot of time off work? My mind at the moment says I’ll just take one day at a time. I’m also usually very active gym/swimming wise. Dr has said to hold fire on this for a few weeks just to make sure my immune system gets back on track, then I can go back, but it will be like starting afresh again, if I can manage at all. My dog is certainly getting far more walks than he normally gets which always makes me feel better each time, even though I have to drag myself up sometimes. I’m keeping a log of how long each walk takes as well as keeping a diary. All new things but it helps in a funny kind of way.

Once again, many thanks for your email. If it’s ok I’ll be in touch again soon. I’m sure I’ll have more questions to ask.

Best wishes,

Richard

• This reply was modified 7 years, 11 months ago by  richard48.

[richard48Participant]

Thanks for your replies. It’s really good to hear some positives from both of you.

I met with my consultant today and just want him to crack on but I had to ask him about figures and protein levels to try and get some understanding of it all. Not sure how much it sunk in but I’ll have to be careful that I don’t get fixated on numbers as if they do go down or go wrong it will no doubt get me worried. Something for me to focus on.

One thing I have found hard today is feeling very weak. It hasn’t stopped me doing anything but walking the dog took forever. I’m usually very active so I guess the gym and a swim are out for a bit until my infection risk reduces? Do you have any suggestions about what I should or shouldn’t do re exercise/wellbeing? I’m thinking about accessing some yoga sessions or mindfulness which should help and I intend to go to one if the Myloma UK info days in the new year.  Any other thoughts would be appreciated especially support for family members too. My wife Lynn is really strong but she needs support too.

I’m also getting strange tingling in my mouth and around my teeth, and sometimes I seem to have a film over my eyes-I can still see but it’s a bit like a haze/different shade of light. Consultant said it’s normal. Should I expect much more?

I’m sure I have loads more to ask but it’s still a real mine field and not sure where to start.

Thanks again for your emails.

Best wishes,

Richard

 

 

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