Christmas is over, family has returned to their lives in faraway places, the tree is down and holiday decorations put away for another time. Life, as they say, can return to normal.
The problem is I no longer know what “normal” is. After a cancer diagnosis, surgery, and chemotherapy little in my life is as it was prior to diagnosis. My body is different - scarred and weaker, no longer able to tolerate certain activities nor to move as freely as before. My mind wanders into places it never dared to go and holds both fear and hope in equal measure where before fear had no place. My spirit has been challenged and I have questioned much of what I thought to be true.
2017 was the year I fought for my life. Surgery and chemotherapy took a great toll on my physical and spiritual being. 2018 was a year of recovery, my focus on healing. It took the entire year to rebuild my physical strength, to find a mental space where I can live with and even embrace the uncertainty, to get back out into the world and yes, to grow my hair into a style that looks like someone other than my oncologist cut it.
It is time for a new beginning.
So, Monday night I will close my eyes to old ends and open my heart to new beginnings.
Bravo! You are echoing many of our feelings!! At times I can forget, when Feeling well, but the back into the slough of despond and feeling life has dealt a nasty blow!
Well us and thousands of others!!
When I last spoke with my oncologist ,I told her that this was a difficult disease to deal with,as no cure just maintenance , so will never have the freedom of feeling disease free, always the uncertainty of where it’s going next!! Well for me at present toward the heart so will be starting a sixth line of 24 weeks very soon!!
But we keep on and do what we have to to stay alive!!!
Felt your words were so apt and deep feeling!! Keep your strength and hope up as most of us do(with the occasional brandy)
Thank you for posting that , so elequently put ,and echoes so much how I feel. The diagnosis, waiting for results and treatments and doctors appointments . It’s all like a bad dream .there were times when I didn’t think I would be able to carry on , but because of this site and all the support from the wonderful kind ladies on here , I didn’t feel so alone . So , I , like you will try to concentrate on healing myself , and try to be more positive. As you say we can hoot that 2019 is kind to us all.
I think you summed up how we all feel, well I know its how I felt years ago and tbh Ive never felt 'normal' since but I have a new 'normal' one that allows me to throw caution to the wind, live, truly live, because we never know whats round the corner xx
I like your attitude and sense of humour, hope 2019 is kind to you
Beautifully put - I have had a very difficult Christnas both emotionally and physically - post chemo I felt I was developing arthritis but was more or less told to just take otc painkillers by oncologist - post my flu jab in November the aches have got worse and I’ve spent much of festive season in bed struggling to move without pain - this disease on its own is more than enough but now I’ve additional problems it all seems beyond me - I’m hoping that I can get out of the dark hole I feel in and your words encourage me to look beyond the difficulties and to try and find solutions - thank you x
You will do it hunny, but you need someone who is more forcefull with your onc, no one should be suffering pain like this, if he can’t alleviate it, then he needs to get someone who can.
Thanks - It might just be me but my GP defers to onc and onc is really only interested in cancer so lot of time I find it hard to get things sorted - if I don’t feel better tomorrow I’ll have to go to walk in - well hobble in ! X
I love the sentiment Carole but I so relate to what you are facing, Coldethyl. I am going to insist on a referral to a rheumatologist on Monday 31st. Maybe you could try that too.
I can’t understand why nothing is simple - I have already gone round in circles dealing with the bowel consultant and oncology myself and I can’t hejp think why can’t they talk to one another as nothing is coordinated - my GP said it’s hard when you’ve more than one discipline involved in your care but it shouldn’t be - I’m going to ask for something to be done as fed up with being ignored - good luck getting referral x
Sorry to hear you are in this position. When I was in a similar situation the thing that broke the stale mate was paying to see an appropriate Consultant privately. In my case it was a Gastric Surgeon I went to see.
The Consultation cost me £150 but was well worth it. He liaised directly with my Oncologist and Oncology Surgeon on my behalf. And within a month I was having the gastric surgery I needed on the NHS. My Gastric Surgeon even called my Oncologist from My hospital bedside when there was a query.
I understand that you should not have to go it these lengths and not everyone can do so financially but if I was in a similar position I would do the same again.
Good idea - my ONC reg is great but of course it is consultant oncologist who calls tune and I find her focus is always on the cancer and not my wider medical issues - I don’t expect her to deal with everything but I do think those things linked to cancer should be dealt with by a team who know what is necessary to solve the issues of surgery and chemo. X
By the way after much thought I also swopped my Oncologist for that reason. In many ways I am very grateful to him. Not least for keeping me alive! But his apparent lack of interest in anything other than the acute treatment of my cancer became such a concern I could not ignore it anymore.
Thank you for your thoughtful words. May 2019 be a year of never giving up. Never giving in. And never forgetting be strong when strong is the hardest thing to be.
So beautifully put! You have put into words how I feel so well. Thanking the Universe in advance for exactly what you desire can be a lovely exercise. It puts into perspective what is really important.
Yes , you’ve definitely put into words how I feel too. 2017 was my terrible year too!! I’m trying to adjust to my new body but it never seems to be able to do what I want it to these days. There always seems to be some new ache and pain to worry about. But on the bright side, I am still here and I have a lot more empathy and understanding for people than I used to. Here’s to a better 2019 for everyone !!!
Many of us will echo your sentiments so beautifully articulated and my dearest wish is that 2019 brings better health and the strength to carry on embracing life.
With love and heartfelt thanks to you all for your generous support this past year.
Thank you for these thoughts! Whenever I buy a new diary, I wonder what it will contain! In 2016/2017 I managed a reasonably normal life. 2018 definitely saw an up in the hospital appointments and a change of hospitals, but I still reckon I had more days away from hospitals than at them. The secret is to make the most of your own time if you feel well enough. I didn't have many holidays away, nothing like I used to, but lots of perfectly pleasant days out nearer home. At the moment I'm looking at 2019's diary wondering if my luck can possibly hold out for another year, with 5th line treatment starting on 3rd January. We boldly go ... good luck everyone, and may it indeed be a kind one. xx
You have beautifully totally summed up just how many of us feel. My diagnosis and treatment year was 2014 closely followed by a slow recovery year in 2015 although I don’t think we ever truly recover either mentally or physically but we have a new normal which we can live with if we’re fortunate enough to have the opportunity. I hope you are able to go forward with a fresh outlook and with love. Live this life, enjoy the ride and experience lots of lovely new things you may not previously have thought possible or appropriate. I wish you and all of us a healthy 2019. Love and hugs ❤️Xx Jane
My sentiments too. In some ways I just want to get through 2019 unscathed. I don’t feel I can celebrate on New Year’s Eve as everything feels fragile and raw still. I’d just like us all to ‘plod’ on at a steady pace with no trauma or stress and to enjoy the simple pleasures in life. I’ll be saying a prayer for all the ladies on here x
Yes...you have just expressed my body changes and thoughts in my head that I to am still trying to adjust to.those same words,wow! What is normal?while waiting at the pharmacy one day a sign caught my eye "NORMAL IS JUST A DRYER SETTING"
When I first saw my Oncology Surgeon in summer 2014 he told my husband to write off the next year as being total crap but that it would be better after.
He was absolutely correct. Knowing this really helped my husband and I to get through those utterly crappy things that year and he gave us hope.
Alma! I think you have captured our collective sentiments in your eloquently written passage about the cancer journey!
Nothing is as it was before...and we've all cried and struggled to find our new 'norm' whatever that's supposed to mean....but somehow we've managed to hold our heads above water and carry on marching forward as the alternative is too scary to contemplate!
So let's pat ourselves on the back....we're still trying to lead quasi-normal lives in spite of all the doubts, insane fears and dread that grips us when we start to feel shaky and vulnerable.
Thank you for speaking from the heart and striking a resonant chord in our hearts.
Your post is beautiful. I hope and pray that 2019 will be wonderful for you.I have M.S. for 30 years and have had lots of practice of New Normal .lol When I was diagnosed they said debilitating, death usually in 5 years .Well Im still here and I can walk. lol This is a new beast for me.I was diagnosed mucinous stage 1a. Good for me lol Who knows it can change quickly as I don t have enough time of NED to be sure of a good prognosis. Idon t mean to sound negative but this beast has a mind of its own.Happy NEW Year by the way .I also heard on the news in Canada breathrough for cancer treatment.They inject healthy peoples donated immune cells into the cancer patients.
Beautifully written! If there's one thing that I could wish for us all, it would be for us to regain the sense of feeling carefree. It seems to be lost forever once we have our diagnosis.
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