Hi Richard,
What did your latest Bmb reveal? Hope all is well
Rebecca
Hi Richard, Sorry to hear things are on the move but sounds like you have a plan that is being tailored to what you want/don’t want. How different that must feel from when first diagnosed? – makes me shudder just thinking about that time of initial diagnosis/treatment – totally out of control. Yes covid/lockdowns and dexy on top would not be a good move for family life! Hope all services are running as normal in Germany – not sure that is the case here in the UK tbh. Lost track of it all as my haematology unit has closed due to lack of staff so disbanded to far away places courtesy of a phone line. I made the 7 year mark at Xmas treatment free but levels now slowly rising out of range but as I am not yet requiring treatment “they” won’t discuss which hospital will now do it until it happens and I have no relationship with whoever phones me for blood result update. For me, lack of control and inability to have input/forward plan what may happen shortly is almost like starting from scratch again but with more knowledge now to frustrate me. Is changing one treatment plan to another still as scary as starting treatment again I wonder? I am guessing you have maintained good mental strength/discipline throughout being on treatment and will no doubt take it all in your stride. Hope all goes well and this combination is even better for you.
Take care
Rebecca
Hi Deano – I was diagnosed at 50 and daughter doing her GCSE’s – she has completed her degree and currently living abroad…if I could have foretold this at diagnosis I would have saved myself a lot of angst (very much an understatement!). Don’t despair – new treatments are coming out and often statistics are based on older treatments and much older people with perhaps other comorbidities. I am 8 years since diagnosis and 7 since SCT and remain drug free and living a normal life not impaired by MM – and you will too. Often MM is very much more a mental battle but once you develop coping mechanisms that work for you and you see life resuming as normal again you will learn to live well alongside it – believe me it is a marathon not a sprint – so you have time to breathe and focus on how you can live with this mentally. I chose exercise, motivational quotes, blasting songs, mindfulness. Whatever suits you – find it – and start disciplining your mind, like flexing a muscle. You will learn to put MM in a box and only let it out when you choose to – focus on that and you’ll do just fine.
Best wishes
Rebecca
Hi nbc, When I was taken into hospital – at very critical stage due to misdiagnosis- like you I looked at it via my daughters perspective. She was revising for her GCSE’s and I was so worried about affecting her, not being around to see her settled etc. Anyway GCSE’s came and went then A levels and now completed her degree and off living in another country atm! If only I knew that in the beginning I would have saved myself a lot of self torture. Myeloma life is now a long and winding path to navigate – some bumps on the way – but then that is life. You have time to breathe and more importantly time to develop coping strategies that work for you and keep your mind strong. None of the chemo or the SCT was ever as bad as the damage my mind caused me. I read lots of books on cancer, mindfulness, positive thinking etc to help. I could never envision a time not dominated by MM but it does come. “Marathon not a sprint” used to be quoted on here and it really is true.
Rebecca
Hi Dennis, I didn’t think you were being negative just a realist. I just like to remind everyone that we are all unique and not a statistic. My consultant would not give me a “date” and so I searched on the internet – big mistake. The survival time on the internet is misleading due to the rapid increase of treatments available and doesn’t reflect the general health of the individual also. Take care
Rebecca
Hi Dennis, Putting a deadline on us is the first thing we want to know tbh but as myeloma is so individual and with all the new treatments I do not feel it helpful. Due to my kidney damage on diagnosis I was told (much later) pre Velcade treatment I would have lasted 4 months but I am about 8 yrs since diagnosis! In my clinic I met an elderly lady who has had it 16 yrs with only 2 treatments – of the same drug – keeping her in remission. Another person had it for 20 years n still going strong. I guess I look for the exceptions – and there are plenty. It is recognised, I feel, that the younger you are the stronger you are to withstand multiple treatments etc and treatments are advancing. Aim for 80 yrs at least! Take care
Rebecca
Hi Kayle – I think most people go back to work full time after Sct/in remission. I chose to work only 2 days a week after SCT but that’s only because I could and I wanted to do other stuff etc. I play a lot of tennis (2 hrs last night n 3 hrs this morning – tho soaking in the bath now as have an important match on the morning!). 6 months post SCt I was at full fitness and playing league matches. This is a blip in your life only – I was in a very dark place at first and could not imagine life ever being normal again – but it will be and as time goes by you’ll learn to lock MM away and
think about it when you “choose” to think about it (like me atm). Mm is much more a mental battle and the sooner you discover/develop coping strategies that work for you the easier it will become. My lifeline was exercise, positive quotes, mindfulness and most importantly recognising that whilst you cannot control the disease or the treatment – you have full control of your mind, your thoughts, your reactions – it is this area we all need to flex, like a muscle, and keep strong. Do what makes you happy and if you are doing stuff that doesn’t then now is the time to be bold and embrace change.
Rebecca
Hi Mark, I was 50 when diagnosed. I have high risk genetics and it aggressively attacks my kidneys (not bones!) in even small amounts. This Xmas will be 7 years remission post Sct without any maintenance (Tho I have my bloods done next week – but feel well). MM is extremely unique to each individual so just because you have high risk genetics it does not always pan out that you will be difficult to treat – which is the important bit. I know my genetics attack aggressively but, to date, has been easy to treat/keep at bay. Always remember you n yours are unique so you have every reason to be hopeful, buck the trend etc. Stay positive and keep up an exercise regime even when tired – will keep you strong on many levels.
Hi Jess, I had mine in Leeds and the isolation rooms appear very cold – think this is typical. I needed a cuddly warm fleecy blanket – for the comforting feel of it also. When appetite goes or sore mouth – I had little pots of custard, jelly, rice puddings – a tip I got from someone else. Audio books were great as less effort. Bought cheap packs of knickers as runs can be an issue n then just disposed of them n no washing. Baby wipes are useful. Didn’t have a head dress but wished I had a woolly hat or a headscarf. I was in a room of my own throughout so didn’t need headphones – not sure if policy has now changed on this. Laptop. I found it hard to settle to do much and you do get the films channels. I did make a count down calendar estimated 14 days in max – and at the end of the day no matter how bad it had been it was great to cross a day off and recognise one more day closer to home.Made it seem very doable as it broke the jail sentence up somewhat! I would make something like a countdown “advent type” calendar and everyday for 14 days you open the flap or box and inside is a treat for now or when you are out – Like a day out somewhere special etc. Even a favourite chocolate. It’s a long haul n tedious in that you don’t have a lot of energy but are equally bored. Little craft type projects to try? Skin got dry so body moisturisers. Thing that helped me most was little funny messages about what was happening at home and a few calls. I was very active upto going in etc so it was a real culture shock but am guessing after lockdown a couple of weeks in isolation will not seem as big a deal as normal so hopefully that will be a plus point. I can’t think of anything tbh. Just lots of treats and plans for the future.
Rebecca
Hi, I may not be “typical” in the MM world as I have always sought to hide my condition from others – even though I underwent Sct. I have not exactly shielded- shopped throughout and looked after my parents – though am as careful as able and have always worn a surgical mask whilst shopping from day 1 and I walked the dog. I am now out playing tennis but……I have never in all of lockdown felt so concerned as I do now. Social distancing is more or less gone now, shoppers have stopped adhering to the one way system through shops, masks seem to have fallen by the wayside ( except me locally). Whilst walking the dog throughout lock down people gave you a 4 metre wide berth – now nothing! Having said all that, and maybe because I choose to keep my condition a secret, I would not wear anything to differentiate me but – more importantly – the shift in attitude by people leads me to think they would not alter their behaviour for me. I felt safe when everybody else was trying to stay safe and now I feel like a salmon swimming upstream! Because of the swing of attitude from the general public I think I will resign from my job come August in an attempt to stay safe as I believe even those with mild symptoms will not declare it. I am not a cautious person and weigh up risk/reward in life but am very concerned now – but never enough to wear something to single me out – but all indications I have experienced with the shift in change leads me to believe it would be totally ineffective. Would like to have been shielded longer as have no rosy predictions the way things are panning out.
Hi Rose, so sorry to hear about your father. He really is getting lots of things thrown at him but he has survived coronavirus so hopefully he’ll do ok with the others for now. Did coronavirus damage his kidneys or do they think it was MM? I ask because once the burden of MM has been removed kidney function can improve – I was in single figures about to go on dialysis when they discovered MM – A year later I was low 20s and 6 years later am in the 40s – so things can change. Staging of MM is not particularly important it’s his well you respond to the chemo – good that there are no fractures. Your dad sounds like a fighter – please let us know how he gets on.
Take care
Rebecca
Hi there, When I had my transplant it was some distance from where we lived and my husband needed to be home for my daughter so other than an occasional quick visit (due to travel time) I was pretty much isolated. I was fine. Visits are over rated – your husband may feel too tired etc so just use FaceTime – at set times or when he feels up to it. He will not be in any pain with the process – will be overwhelmingly tired, nauseous and have the runs for a bit – very draining mentally and physically and will hopefully sleep a lot. The best thing you can do is cheer him up in brief but plentiful “little”chats.Sometimes not having visitors gives you the ability to just focus on yourself/recovery without having to put on a brave face to make your visitor feel better. It is tough mentally though as time goes on so try and plan treats for when he is out and give him something to look forward and focus on – perhaps something new he has been wanting for his hobby – something to do in recovery or together ? Be very positive that life after transplant will go back to normal when he’s recovered and plan for that as much as you can. It’s a bit of a slog so be a cheerleader and a positive force for him. Sct is not pleasant but it’s doable- had mine 6 1/2 years ago and still in remission – life will resume again. He is likely to more worried about how you are coping so your reassurance will go a long way to make it seem easier for him to focus on his recovery. Best lippy on and big smile – send lots of photos, little funny stories etc to put a smile on his face when he needs it – he will just be feeling a bit rough n fragile.
Take care and make sure you look after yourself also.
Rebecca
Hi Neil,
My understanding is because myeloma is a cancer of the immune system then regardless of whether on chemo or not, relapsed or in remission, we are all high risk unfortunately. I did read that those with terminal cancer, with less than a year to live, must choose what they want to do. There is no house arrest or monitoring of individuals so it is up to you what risk/reward strategy you personally follow. When tests are plentiful in theory we could mix with those who have tested positive for antibodies.
Hi Greg, When I asked my GP for a shielding letter I got a txt telling me I was vulnerable but unless on treatment not in the “extremely high risk” group and to social distance. So even the medical fraternity are confused! I contacted our Helpline who clarified it was “everyone” and I asked the GP if they would align with Myeloma Uk and Bloodwise guidance. I got a shielding letter. My immune system is always below normal and I know I struggle to shake things off so I do believe I will be in great difficulty if I get it but until there is a vaccine what can we do really? Be careful, wash hands and hope for the best. If The highly vulnerable can be furloughed long term I suspect the current list will become super small.
Hi Neil, Yes some soul searching to be done on an individual basis. I am currently furloughed (which is great) but doubt whether the govt will furlough us for a year? – tho, for me, that would be great as I would be getting paid but carrying on life as normal as possible. We are all supposed to be shielding but how many of us are out on quiet walks? (me) and I go to the shops when I need to (but wear a mask n gloves).I am in remission and well and have no intention of hiding away for a year – my choice alone. Individually we have to decide what risks/outcomes we are prepared to take. I will live my life/family life well and if furloughing does not continue I will stop working as I think the workplace is where I pick up all my bugs. Even if we can furlough on health grounds I am sure we can decide not to furlough and go to work – if that is what an individual wants to do. We never know when remission ends and I already had lots of plans for summer/travel that have been scuppered. I bought a body board bag on eBay last week and when the beaches are open and the 12 weeks are up that’s where I’ll be heading regardless – but will aim to do all I can in a quietly safe manner- that’s all anyone can ask of me and I make no apologies for my choice. Our life. Our choice.
Rebecca
