Don't feel like me

tokyo Tue, 18/06/2019 - 10:29

This is how much cancer and the horrific treatment changes you, bottom left is now, bottom right was before cancer, top 2 during treatment. It doesn't just change your appearance its mentally scaring, I may look better, bottom left, but on the inside i feel terrible. The mental pain now is the hardest thing, my mind can now relax a bit as I don't feel I'm fighting for my life, but I still am mentally, cancer is definitely more of a mental disease, it's very hard as people without cancer just don't understand me, it's an indescribable feeling, that absolutely kills you inside, it changes the person you are, it changes the person you thought you were, it just so horrible. The after care from hospital and cancer care team seems to stop when you stop your treatment, how the hell are people supposed to deal with this?? What I have been through was and is extremely scary and traumatic, seeing yourself dying day by day, seeing yourself changing and wasting away, using all your energy from every inch of your body just to get through each day and the mental torture of seeing everyone you love hurts so much because you are so sick.
It is so much to deal with and very lonely.
This isn't a plea to talk to everyone, not looking for sympathy, this is just the hard fact and truth what you really have to deal with having cancer.
It's the worst disease in the world, it ruins you physically, mentally and hurts everyone around you.
ITS LONELY, ITS MENTAL TORTURE, ITS PHYSICAL TORTURE.
ITS HELL!!
This is all the stuff they don't tell you about in treatment and there doesn't seem to be any help, I can't see me ever being me again, it feels pete has gone ? Stages of cancer

The Salty Cow Mon, 12/08/2019 - 12:10

Hi Pete,

This is something that seems to crop up a lot, cancer doesn't go when treatment ends. In fact, when treatment ends is the hardest part. You're expected to go back to your pre cancer life but everything has changed, your body is different, your mental health needs tlc, your outlook on life can change.

And you're so right, this is the part that they don't tell you about, things are improving and the mental side of things are being picked up on more but it's not enough.

I really feel that the mind should be treated straight away as well as the body, too many people are being spat out of the cancer world bewildered, confused and battered. Unsure what their future brings, unable to relax and move forward because the impact of cancer is so monumental.

All I can say is it does improve, be your own advocate. Be knowledgeable about your health and what your future could bring.

Much love fella ?

Zeyla Thu, 15/08/2019 - 19:50

It's awful the way they just expect us to just pick up where we left off, It's 15 months after my treatment ended and I still have such bad day's and struggle, the night mare's and really not feeling like me, other than checkup they no longer want to know or support in any way, which is so hard.

Mentally I'm drained and really understand how others feel in the same boat.

Scott Sun, 18/08/2019 - 19:51

My continual trips to two major haematology departments, one close to where I live, and one a two hour train ride away, despite being in remission for over twelve months, have convinced me that my early recognition of the fact that I am now leading a totally different life to the one I had before diagnosis was a correct one to make.

I stopped working on the day before my leukaemia was confirmed.. As a driving instructor I spent much of the morning following the life changing news contacting a diary full of pupils and relevant business contacts to inform them that the arrangements we had in place were now null and void. I watched all the lessons and courses I had to present, disappear from my diary laptop with a sense of regret,sadness but also bizarrely a perverse sense of optimism for the future. My condition was now out in the open, things from a medical perspective were being put into place, it was now just a matter of getting on with the treatment.

Not even for a split second have I ever considered that the process wouldn’t end with a positive outcome.

That was the moment I began the process of reconciliation and a new awareness of what the future was going to hold. Things were unlikely ever to be the same and they haven’t been . Strangely I have never been sure of what that new life should comprise of . The old life of work, life certainties, including the classic five year plan, were set and had been functioning for the best part of twenty years.

This new version of a much leaner me ,the exercise focused lifestyle is actually one I am starting to enjoy. Free from the day to day rubbish of office politics and doing things that work conventions dictate rather than doing things you want to do.

I guess the key a positive outlook in my view is to realise that things have changed and trying to go back to a life that has gone before is impossible.

The Salty Cow Mon, 19/08/2019 - 13:24

Absolutely Scott,

We hear all the time about this 'new normal' which we are supposed to be living yet the reality is that the new normal has no similarities to our old life. Some people are able to slip back into their old lives but I see that few and far between. We end up with a completely new direction with a completely new mindset because our lives have been taken over by cancer and all that comes with it.

I'm trying to embrace my new direction and it's certainly a lot easier now I'm not fighting to be living my old life.

Keep on keeping on!

Liz x

Scott Mon, 19/08/2019 - 18:47

Hi Liz ,

In chatting to many folks in the hospital environment the old /new life stuff is a very common thread.

I think in many ways, because the remedial treatment needed to keep us well is still as full on as the original therapy moving back into the old life is actually near impossible in a realistic practical way.

Ive been in remission over a year now, but am still attending clinic as an outpatient weekly, along with monthly infusions of antibodies which take up a full day . Not many employers would be able to work my appointments into a staff rota . I guess it’s a recognition of the new reality that helps things move forwards in a positive way.

Keep embracing your new direction..

I will definitely keep on keeping on ..Many thanks.