This is a difficult one for me because I pressurise and question myself all of the time. When will it start to feel better? When will I start to feel easier about the diagnosis and what may or may not come? For me, two years after diagnosis, this hasn’t happened. This morning I had a thought that perhaps that’s just the ways it’s going to be and in fact that’s what I need to accept. I compare stories and coping strategies and try to reassure myself that the way I’m handling things is ok. I always do this! Over the past two years I don’t think I’ve used this information positively. I think I’ve realised today that coping mechanisms are very individual and depend a lot on past life experiences. When thinking about acceptance I’m sure it will get easier as time goes on but I truly don’t believe I will ever accept this. So, instead of worrying about when and how acceptance will happen I’m going to just try to accept that, at the moment this is how it is. I’m not going to give myself a hard time about feeling like this but Instead, look at ways of managing those feelings. Beating myself up about getting on with life and not wasting a minute hasn’t done me any favours, in fact it’s made it worse. I’ve spent more minutes wasting time worrying about this than anything else. So, acceptance to me is no longer about accepting the blood cancer and living a new normal but accepting the way I’m feeling now and that this is the new normal at the moment. I’ll get support, I’ll still read all the wonderful contributions on here and take what I can from them, the guts and the courage of all of you but I won’t compare! Who knows, in time the other kind of acceptance might happen naturally X
Within the first year of my diagnosis (7 years ago which I describe as being hit by a tsunami) I did an eight week Mindfulness Course; it’s become a ‘popular’ approach in the years since and easily mocked which can be off putting. However mine was led by a retired GP and it indirectly helped me turn a corner with regard to acceptance. Intellectually accepting blood cancer for me has become less of an issue as I’ve focused more upon living for the day. It was most difficult in the periods of waiting for our daughter to get married and then waiting for our first grandchild to be born…and now with the hope of another grandchild I find myself fretting about being able to help her and live to see this child. I imagine acceptance is never a constant but I’m an advocate of distraction techniques when I become conscious of negative thoughts. I sincerely hope you find ways of adapting and finding meaning and resolve within the challenge of living with your condition.
I definitely agree that distraction is good. I have the same thoughts about the future and watching my two daughters grow up. My counsellor has just suggested EDMR therapy which is all about rewiring the brain and improving the response to the negative thought. I can’t wait to start! This Thank you for sharing your thoughts with me X
Acceptance depends on the person.
I have MDS RAEB2, I was shattered when I was first diagnosed in November 2014, I was told I was incurable and my prognosis is poor.
You will gradually gain acceptance of your predicament over time as I did, after all what choice do we have.
I’ve just completed my 52nd monthly cycle of Azacitidine, I know it can stop working anytime.
At first this scared me rigid, but over time I’ve accepted my fate.
Make the most of the time you have left. My life is very restricted now as I have to be alert of any causes of infection which could kill me quicker than MDS.
Above all don’t lose your sense of humour.
Remember the old song “Enjoy yourself it’s later than you think”
In spite of all I’ve written I do wallow in self pity sometimes, we all do, but don’t let it go on too long.
It really is a waste of time.
Good luck and best wishes
Sense of humour is so important. Thank you so much for your reply. I will make sure I make the most of every moment. Sending lots of good luck and positivity your way too X
I really feel for you Nichola. You express yourself very well… the confusion, the desire (or need) to accept, the beating yourself up. But you are right - beating oneself up in particular is utterly counter-productive. Each day is a new day. Some bring comfort, some bring frustration, some bring anguish, some bring joy. This is the same for all of us, illness or not. We all face trials and tribulations and what helps me is to allow myself to feel whatever I feel, and, whenever possible, to seek and find gratitude in whatever we can… however small. As you say, coping mechanisms are as individual as every other part of ourselves. All you need to accept that you are Nichola, you are unique, and - like all of us - you can only do the best you can with what you’ve got. Don’t over-question cos it doesn’t help. You can live with something without truly accepting it - that’s okay too. Try to incorporate relaxation techniques into your life and also as many pleasures as you can, as often as you can… whether it is getting lost in a good book, treating yourself to some new clothes or make-up or smellies, enjoying some wonderful music, stepping outside and breathing in the fresh air and looking at the trees, or spending phone or (better still) face to face time with a good friend. The possibilities are endless. Wishing you luck, love and peace xx
Hi Marilyn, thank you so much for your reply. I think what really struck me was the sentence about being unique and doing the best with what you’ve got. I’m going to try my hardest not to over question things. And you know what, you’re right. I can live with it without accepting it! You speak a lot of sense. Sending lots of love and good wishes back to you xxx
There is no denying, diagnosis rocks everyone too their boots. Then your life gets taken over while they work it all out. Then you either have to handle treatments or get told you have to live in wait. Not quiet sure which is the harder of those two mentally. Suffice to say we have all been thrown a curved ball. Each one is unique to you and how we each handle it has to be unique to us and our lives.
I found that I needed to know everything about what I had, spent six dark winter months researching my socks off. I have a strong survival instinct and I like you I constantly question. Its my solution to the problem but thats me, so I used it too my advantage. I feel I can never leave the responsibility of ‘me’ totally to others. It makes me feel too insecure. I may not be the expert but I have to be on the team. I have to know the facts. I have to contribute to the solution. It helped me feel more capable of getting on top of things and lessened the stress & anxiety levels because I knew what they were talking about, I knew the pathways, I knew what I wanted and consequences of choices in advance.
One useful thing I read was that Swedish studies have linked high levels of stress and axiety to cancers. Stress wares the body’s defences and therefore theoretically can enable problems to develop. I decided that it would be a good philosophy to adopt a NO STRESS system and set out to change my thought patterns and reactions.
No one can deny having any cancer diagnosis is scary, unwanted and disruptive but how we handle it could have more of an impact than we think.
I adopted the mantra - ‘stress feeds it so starve it’. ‘Cool calm and collected’ is the new order, no matter what the condition or what the world decides to throw at me. I have a strong belief that our bodies are capable of wonderful things all by themselves, if we enable them to get on with the job of repairing rather than mopping up stress and anxiety.
So, to sum up, make every effort to help your mind and body cope with the invader: Keep your distance from any infection. Dont overstretch yourself, plan a slower, more balanced life, allow sufficient and regular rest /recovery time. Be nice to yourself and those around you - you need them and they suffer just as much, if not more in some cases. Don’t expect miracles. Be thankful for small achievments and find a safe outlet for the anger - we all get it, it can fester and it can be very distructive, so needs to be got rid of safely - a good cushion to thump, a walk & a talk etc.
Just always remember you are certainly never alone with this and chatting to others in the same boat is the best medicine.
Wishing you and all my fellow blood cancer patients the very best outcomes and the very longest of remissions that each can manage.
Hi Karen, what you have written makes so much sense. I too need to know everything because I feel that gives me some control back. My plan is to change those thought patterns. I think that’s the most important thing, as well as being kind to yourself. Thank you so much for taking the time to reply. Wishing you many more cool, calm collected and healthy years ahead! xxx
So glad I can help. Very best of luck
We are all here for chats, letting off steam or having a good cry about all the frustration when you need us.
You have exactly the same attitude that I follow Karen.
I too question everything involved with my treatment.
It works very well.
My GP is very confrontational and I’ve had several disagreements with him regarding prescriptions that I know are unsuitable for my MDS.
I always check with the Chemotherapy Matron at the clinic to make sure there are no contraindications with my treatment before taking any medication he has prescribed.
He is of the opinion that “ the doctor knows best”
He certainly doesn’t in my case, I know more about my MDS than he does, I’ve told him that on more than one occasion.
Our survival is under threat and we have to protect it at all costs
Good luck and best wishes
I know this thread is from last year @Nichola75 but it is an incredibly important topic and lots of people shared here so openly, I wanted to give it a bump so others find it. Since you wrote this thread Nichola, how have you been? Has your therapy supported you to feel differently?
Hi Nicola, I have just read your topic and the whole thread of responses. Yes, my diagnosis really did completely shatter me and I was in complete shock, anxiety with everything and fearful of everything for a long, long while and I think my anxiety and fear are always on high alert even 15 yrs on. For me it is feeling out of control of everything in my life, although the irony is actually I could never be in control of most of my life. Your children sound quite young which must give you extra anxieties. I have realised we are all special, unique beings, with differing histories and medical complexities therefore I cannot compare myself with others. However I find the comfort of this community forum is when I realise others, no matter what their conditions might be, share similar anxieties, fears, thoughts and feelings and understand me as no others can. As for my symptoms I suppose I am learning to manage them the best I can and perhaps, for me, a plus point is that I have got to know myself medically and also understand what I do want out of life, for instance I am far less materialistic now and appreciate family and friends, nature, music, reading etc. far more.
I am interested to hear how you have got on with EMDR?
Hi Dawn and Erica. I’m doing ok. I just had my four month check up and everything is still the same. Off course that’s good news and everyone was over the moon, as was I. However, I feel a little flat. That’s the only way I can describe it. Not happy, not sad, just flat. This is a different feeling to what I’ve had before. I think it’s a little to do with the fact that I have decided not to have any more scans following the consultants advice. If it gets worse it will show through symptoms. Putting your trust in the consultant is a big thing isn’t it and I think now that I have decided on no scans it feels a little strange (all sounds a bit jumbled I know). I really just have to trust my body to let me know of something is wrong. The therapy has been invaluable. I could talk about my lymphoma all of the time but often my thoughts and how I express them don’t match. The therapist is able to work through this me. She is very good at making me acknowledge how well I am doing and my coping strategies are improving, which in turn helps with work and home life. Work have been amazing and have been letting me leave work early one day a week to attend appointments. I know others are not so lucky. So have I accepted this? No, I still don’t think I have but I am accepting and acknowledging more how I feel and not fighting that as much. I’m working hard on socialising. I’m ok with close friends and family but bigger groups are difficult. I still have days of feeling very emotional but as my therapist, who wouldn’t! Without her support this journey would not be moving in the right direction. It’s been one of the best, but hardest decisions I made. Accepting help is a strength I’m told. I plan on working on believing that more and more xxx
Hi Nichola. I have had a flat feeling when my blood tests came back and they were ‘nearer normal’ that ever before. I could not explain it at the time but I think it was a weird perverse feeling of that I might loose my CLL identity, the identity I don’t want in the first place. Also that everyone would think I had been a fraud for quite a few years. I have always put my trust in my consultants, although I keep the responsibility of reminding them of my other conditions when necessary. However this forum has helped me have the courage to ask the questions and follow up questions I need answers to. Your therapist sounds wonderful and I am glad you are able to work honestly with her. I am also not comfortable in bigger groups, but to be fair I never have been and the close friends I have are close and priceless, I also am far more emotional since diagnosis I think my emotions work differently now. Yes, I am learning asking for help is a strength, it goes against my childhood messages. Take care, you are really doing brilliantly (I find it hard to take compliments as well!!)
Morning Erica. It really helped to read your post and to once again realise that my feelings are shared with others in the same situation. I think how you react and manage the with things definitely goes back to your childhood experiences and thats where the EDMR works well - retraining the brain. It really struck me when you spoke about the identity side of it and feeling like a fraud. It’s a horrible feeling but so true. Thanks Erica. It was good to have the discussion again. I really hope you are keeping well xxx
Dear Nichola, I think you describe very well how many blood cancer patients feel. How do you get the balance between accepting your illness and letting it dominate your thoughts. I definitely believe denial uses more energy than acceptance, but it means you have to live with a certain degree of sadness at the loss of how your life once was. I don’t think you need to fight these feelings as they are perfectly natural but instead express them freely in a way that releases pent up emotions.
Best wishes alfie
Thanks Alfie. If I’ve learnt one thing it’s that expressing your feelings is very important - in whatever way you are comfortable with. I hope you are well x
Thank you for sharing Nichola, especially around the benefits you’ve found from your therapy sessions. Is acceptance something you think you can or will reach? It’s an interesting concept, especially with chronic blood cancers.
Hi Dawn. I don’t think I will accept I have cancer and I’ve stopped putting pressure on myself to do so. I think it’s more about being aware of my feelings and accepting those. All I can hope is that it continues to get easier to manage my well-being x