What’s wrong with me

Hi and welcome across to this little corner.

I most likely don’t have words that can help but at the same time, in some way, I can understand to some extent,

When treatment ‘leaves’ it’s mark especially a visible mark it can be hard to navigate the feelings and find a way forward.

I was diagnosed with a rare skin Lymphoma back in 1999 classed as incurable but treatable but would never be in remission.

My cancer was very visible and when it appeared on my face there was no hiding it. At times I had 70% body coverage with open, bloody tumours. I think I just grew into living with it.

In mid 2013 one tumour grew to the size of a tennis ball above my right eye...... it was big and continually bleed.

It could not be cut off so had to have radiotherapy to zap it and yes it did kill it off but this took me into years of other treatments (see my profile) but I am left my visible damage above my right eye.

But I have to say that I am alive as in late 2013 I was given a few years if my treatment did not work and remarkably in Sep 2016 I was told I was in remission for the first time in 17 years........ yes, my condition can come back and I am also most likely going to develop skin cancer due to the years of skin treatments......

I have no idea if this makes any difference to you but just putting this down on the post helps me come to terms with the very long traumatic journey I have been on and helps me appreciate what I have, although not perfect.

Hi 247

Like Thehighlander, I don't have any words that can change how you feel but I also wanted to give you some support.

I had breast cancer so it's very easy to hide the physical result of that but I do understand how hard it is for people to face the world when they feel that the way they look is not right and I've known someone who lost a nose through skin cancer and seen her struggle. Facing that struggle daily takes a bravery I can barely comprehend.

I think you are right, there is no end - that is one of the hardest things for us to come to terms with. Everyone (us included) expects us to be back to our old selves as soon as treatment is over and when we are not, it makes us feel as though there is something wrong. There isn't. 

We are the products of everything we have been through, including cancer. It shapes our lives in a million tiny ways and only other people who have been through it really get it, I find. My treatment finished 4 years ago, but I still have my moments - quite long moments, sometimes. It still upsets me and I still need support - I'm lucky to have found that support here and in other places. I didn't realise how much of a difference it made to me until lockdown took a lot of the face to face stuff away.

Do you have a good support network? And are you getting help to deal with your anxiety? Those 2 things can help a lot. I exercise with a cancer group and lots of people are on some sort of medication for anxiety or depression.

There are a lot of places that give ongoing support to people who've had cancer and it can help to just talk about it and how it's affected you - places like Maggies and I'm sure there will be other ones local to you. And of course, there's us.

R

Hello 247,

Can I add something to the brilliant comments you have already had?  I had bowel cancer and now have a stoma on my stomach and need a permanent pouch.  If you aren't familiar with it, a stoma is the result of removing part of the intestines and pulling the end section through the stomach wall.  Put simply, I poo through my tummy now and for the rest of my life.

Sorry for that kind of description on New Year's Day but it has been a life-changer for me over the past two and a half years.  My surgery is hidden under my jumper but the pouch needs changing every day, except for when it leaks in the middle of the night of course, and I get to see myself, or Charlie as he is called, poo daily.  Talking of big red noses, that is sort of what a stoma looks like for the uninitiated.  

It has been a pretty steep journey, mostly up the north face of the Eiger and in bare feet.  I heard Libby Purvis talk about her breast cancer treatment recently.  She said it made her angry when people talked about 'fighting' cancer.  She said you don't fight cancer, you don't beat cancer, you live with cancer.  I found that reassuring because having cancer changes you in ways you can't predict and can't deny unless you want to store up all kinds of emotional issues for yourself.

I have had so much help from Macmillan in making the adjustments to my life.  They have helped me with work and home adjustments.  They even ran the gym class I went to - exercise and core muscle strength being essential to bowel cancer recovery.  The best thing I did though, was to sign up for their counselling service.  I have talked through a lot of the issues.  I have cried buckets.  And, if I need to I will go back whenever the frighteners come upon me again.  But I have learned so much.  I would say ask for help.  It is out there and we all need it.

I am on a journey and that journey includes cancer now.  But I am still here thanks to Charlie and I am able to do things that I love and share time with people I love.  I can't put a price on that.  Yes, I have to watch my diet now and Charlie loves to join in conversations whenever it is most embarrassing in my very public job (and you have no idea what farting is until you hear a stoma begin to sing).  But I refuse to be embarrassed or to apologise because I, like so many others, am surviving cancer every day.  I hope this journey doesn't end.  It is still called 'life' and I mean to live it to the last minute.

I hope that 2021 brings you the reassurance and peace that you need 247.  But as a start remember that you are not alone.  Take very good care of yourself and good luck