KarinSieger Emotional Wellbeing Advisor
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Hello Karin please help me get some perspective on my situation! I have myeloma but following 6 months induction therapy and a successful stem cell transplant last February I am currently in remission and my last blood results three weeks ago looked good. Coronavirus was just creeping into view so I took the opportunity to ask my consultant about the risks.
He is a new consultant and I have only met him briefly twice and I haven't quite worked him out yet. His attitude seemed to be that it was "being hyped up" those were his exact words. He then said that I was very unlikely to catch it and if I did I would be ok! I left feeling very reassured. Fast forward three weeks and I find myself reeling to discover that myeloma patients are placed in the highest risk category no matter what stage they are at whether in treatment or in remission!
I understand that those of us in that category will be contacted individually from Monday 23rd onwards whether by letter or phone call I do not know .
Really struggling now to come to terms with this new reality as I'm sure many people are. Need to stop catastrophising
Thanks for listening
Thanks for getting in touch, Sue. I hear your frustration and fear.
I don't know on what basis your consultant made such comments. Based on what we know now, they are clearly unhelpful and not reflecting reality. And knowledge seems to advance constantly. What we are told today may not hold truth tomorrow. These are very uncertain times.
A cancer diagnosis can already take all certainty and safety from us. The coronavirus crisis can feel like pulling the last bit of safety net from under our feet.
What you feel is normal, which is not to minimise the seriousness of it. As a past and present cancer patient myself I share a lot of your feelings. I think to some degree we need to make decision for ourselves about how we want to handle the corona crisis. Personally, I am told my immune system is not compromised as my chemo was in 2012 and my current treatment approach is different. I decided a long time ago (rightly or wrongly) to remain extra vigilant and take extra precautions now.
To my mind this is not catastrophising. I am exercising "agency", I take charge, I make choices - which is so important at a time when we feel lack of control and helplessness. Knowing we have a plan and do not taking everything others say at face value can be reassuring and calming.
I suggest wait for what you are told from 23rd onwards. I think self isolation and lockdowns are coming our way. Be prepared, in case you need to start early with any of that. Focus on the practical stuff, not in a panicky way. Have plenty of "virus out times" during the day, where you ban thinking about it, media etc. Connect with the good and nice stuff. We need to conserve our mental and emotional energy. Stress weakens our immune system!
I hope this helps. Feel free to keep in touch.
My very best wishes for you!
I was wondering if you have any suggestions for coping with apprehension of my approaching treatment. This will be number 3 of 6 chemotherapy & immunotherapy number 3 of 12...
I use mindfulness, aromatherapy oils & I will be having reflexology the day before. Which I'm hoping will calm my nerves & help me sleep.
I am sorry for not replying sooner. I've only just seen your question pinned on what they call my 'wall'. I did not get a notification for it. Anyway, seen it now.
I wonder what your apprehension is about? I can think of several things, but do not what to second-guess.
Personally, I would not do reflexology or other treatments the day before, but at least 2 days before. Because these are powerful treatments, which address the energy flow and things may take a day or so to settle down. I am not a practitioner of alternative therapies, but a firm believer in them. And that has been my experience and the advice from my practitioner. But see how you get on and ask your practitioner.
It's certainly important to be in a calm and focused zone - also between treatments, avoiding stress, arguments, commitments. That all depends on our life style and family set up.
Calming background music, showers, baths (depending on what you can do), fresh clothes every day, walks, clean water and and food. Avoiding busy public transport and peak transport times on treatment days (not least because of the risk of infection).
I asked your reason for apprehension. My own chemo apprehension was that each time post (intravenous) treatment I would respond differently. The unpredictability was hard. I was also getting weaker and the side effects were getting worse. With each cycle I was getting worried about what I might be in for next. My veins were also getting more and more damaged, and treatment took longer and became more painful. Therefore, I tried to prepare mentally specifically for the areas that worried me. None of this may apply to you. But it may assist you to be specific.
Overall, remain open-minded and flexible and take each cycle as it comes. You may feel like doing some types of preparation or some and not for others.
Given the amount of treatments you are having, I would definitely not under-estimate the importance of self care and being in a calm zone (mentally and regards your living environment) for the whole duration of your treatment and after, ie not just the days leading up to it.
I hope this helps a bit. Here are two 20 min episodes from my podcast series "Cancer and You" which may interest you:
Coping with Chemotherapy
Coping with cancer anxiety and scanxiety
I hope this is of some assistance. Do let me know if you have further questions and feel free to keep me posted.
Best wishes for your treatment Bethbee!
I have just joined this site, how helpful it is to be able to get your worries and fears out there....I find that one can only talk to family and friends for so long...they feel helpless, to help .. and yes it makes them feel bad....my daughters way of dealing with my condition is quite harsh...it’s hurtful, but I have to understand it’s hard for her too...
I have just completed four sessions of chemo/immunotherapy infusions for a small cell lung cancer, and found it very easy to deal with, no discomfort, no pain....good to have someone there with you for long sessions...
I now start infusions of just immunotherapy ..every three weeks 1/2 hour....I have been very lucky so far ..apart from some hair loss I haven't suffered any other side effects...the consultant has told me that the tumour has responded very well to the treatment and has shrunk enormously....During my treatment, and I continue to do so, I practised meditation, twin heart, and hands off,Pranic Healing...I try to be mindful of my diet ..practise regular breathing exercises which really helped....I have only read a fraction of the info the hospital have given me....too negative, too much to absorb .. positivity really is key..I asked friends to spare a moment every day to send strong vibes to the tumour, “Go away you were not invited and, you are not welcome”.sort of thing...
I feel as normal, and well, as If it hadn’t happened....However, I am now hit with the reality that the cells may spread to my brain...and have been offered radiotherapy, in case, frankly I am terrified.. of both the procedure and the method...also side effects.....I find it hard to come to terms, and accept that this condition will forever be with me....I question, do I refuse the radiotherapy..
Thank you for getting in touch and telling me a bit about what is going on for you.
I am glad to hear that your current treatment has positive results and not affecting you too badly.
While you say you don't receive the support from your daughter that you had hoped for, you sound very generous in trying to understand why that might be. Friends, on the other hand, help to send strong and healing vibes.
In addition to the orthodox mainstream cancer treatment, you engage in a range of complementary approaches and make choices about how much and what kind of cancer information you take on.
All this suggested that you value being "in tune with yourself" (emotionally, mentally, spiritually) and approach your illness and yourself holistically. This is about finding peace and balance and being empowered.
And then, as you say, we also have the stark and brutal reality of an illness which is unpredictable. You are faced with needing to make a decision regards treatment for brain metastasis.
From what you are saying it sounds like this may be suggested as a preventative treatment recommendation?
In order to workout your own answer to your question whether to have radiotherapy for your brain, I think it is important to have as many facts to hand as you can:
- Understand the nature of your current tumour and cancer - ie grade and stage and the implications for each.
- Which symptoms, if any, may you have that may suggest the cancer could have spread to the brain?
- Which tests, if any, have been undertaken to justify this recommendation?
- Which side effects can you expect, if you went ahead, and how much could they impact the quality of life that you want and need?
- Get a second opinion if you need to.
I agree with you, once we have cancer, even if treated successfully, we will remain affected - not least by future possibilities of the illness returning. It is something we need to learn to manage and live with.
Regards my own cancer treatment experience, I have found myself in a similar position to yours, when I needed to decide which treatment I opt for (or not). I have written about it and will add the link at the end of my reply. I will never forget what a surgeon once told me -
"Cancer is all about risk. Cancer treatment choices and decisions are all about how much risk you (ie the patient) are willing to take, or not."
Ultimately, you will have to decide. And you can also change your mind. And you can take your time. While cancer may have a different timetable, I believe it is important you work out what "is right" for you.
I hope my reflections are of some assistance. Feel free to keep in touch.
With very best wishes for you.
Here is the article link