Not sure how I'm feeling

Hi, welcome and sorry that you are feeling bad about things right now.  Lots of us have good and bad days and part of this site's role is to allow the, perfectly legitimate, moaning we all need to do occasionally.  You are not very far into your recovery period so it is not surprising you feel like you do.

It is very normal to feel like you do.  Like you I only had surgery and did not need to progress onto radiotherapy.  Sometime that feels as if I have been cheated of the full treatment to eradicate this cancer, but I know it was my choice and there was no good reason to go onto radiotherapy at this stage.  However many of the side effects are just as debilitating as you will read on here from those going through radio or who have had both surgery and radio.

A doctor friend of mine told me that recovery from surgery will take around one month for each hour you are under for surgery for your body to properly recover.  The wounds heal quickly but the psychological and physiological affects remain for some time.  You are in early days.  I am 2 1/2 years since diagnosis and each day is better - either because I am improving or learning to live with the new me.  Having said that my quality of life is very good.  Tiredness will go and over time the emotional feelings will settle.  You could speak to your GP to see if there is some help available to help you reconcile.  Having been made redundant then unable to start your own business layers on the emotional pain.

I share your view that I am not a super human; just someone who has had to deal with something unpleasant and have made my way through that.  Days out will get easier.  That is a promise!  Maybe talk to your husband and friends to tell them how you feel and how you want to be regarded?  Learn to pace yourself and listen to your body.  There is no shame in cancelling at short notice.  I did it the other day when I thought that I had a reoccurrence and could not handle the emotional stress of a meal - luckily it was not and nobody from my clinical team to the people I cancelled on thought any the less of me.

Spring is coming, enjoy the season and value the life chance you have been given - it will get better.  Stay with us and there will be lots of other good advice given to help you now and as your recovery progresses.  

I am at work so can't write too much, I will do later but I 100% can relate to everything you are saying, you are doing fine but it is early days, please don't think this is not normal xx

Hi Jensta

What you're feeling is. normal and as Peter says it's still early days in your physical and mental recovery. I think it's difficult to not push yourself too hard in both respects. You have lot of healing to do and part of that is not actually pretending that nothing really happened. It did. You had cancer which kills a lot of people. Luckily you are fine and I think you have to come to terms with it in your head.

I too hate the fight and warrior mentality. It's so often used by people who haven't had cancer. We who have know it's not a fight...we have no choice. It extends to those who die being labelled as having lost the battle as if they didn't fight hard enough.

We are not ROCKS or STRONG, we are SURVIVORS and lots of us have PTSD to some extent and it's this that need time. It was year before I felt anywhere near human and not guilty any more.....

This is an excellent article by psychologist Dr Peter Harvey. Have a read and show it to your nearest and dearest.

Hang on in there ...It does get better

After the treatment ends

All the best xx

Great post. Comes as very welcome.

You are giving out, please realize, with this message. It's bound to help many and has me. I'm only a week out of hospital with similar + TORS and feel floored. People asking this and that of me, all in their best intentions of course, but received as "too much effort" to reply. I don't know if I'll ever recover; seems more likely I'll head to and settle in a new place, a new me. I too feel lost but maybe being lost is needed to find the new me whoever that will be. No job first time in a worklife... I'm 60...expatriate to boot so no stable home ...just content I have loved ones close and far away and a bit of savings. That's enough. When a successful swallow is cause to celebrate, perhaps one needs to be easy on oneself I'm telling myself. So don't feel guilty, do express yourself, it's motivating for you and your readers.

Thanks for your post, it came at the right time.

Hi 

I too had a similar op to you for ACC, due to start radiotherapy soon. I’m 52 work full time but been off sick since September (apart from returning for 3 weeks between ops). I feel ok generally in myself but frustrated because I feel like a freak at times, when I’m talking I look like I’ve had a stroke, swallowing isn’t easy, im deaf in one ear and I occasionally have my drinks coming down my nose. I feel sad that I’ll never be the same again. I used to be fit as a fiddle, regular runner and never thought I’d get anything like this. I miss going out having a meal and a few drinks and can’t see when I’ll ever get back to that. I have a daughter age 15. 
having said all that, I try to take one day at a time, what will be will be. I try to stay positive for the sake of my daughter when inside I’m a wreck. I try to keep myself busy, walking, baking (and eating)! I’ve never done so much housework! 
after listening to people on this site, I think it’s very early days! I remember seeing a young lass about 7 yrs old on TV a few weeks back, she had cancer and it really made me think . You’re not sleeping, that doesn’t help your mood. Try listening to some mindfulness stuff (it helped me, I’m not normally into that kind of thing). Do you need to speak with GP (?? Antidepressants for eg)??? Just a thought as it’s massive what you’re going through? Try to keep busy and avoid too much daytime tv it’s full of negativity like funeral plans and save a donkey adverts! It’s enough to drive us over the edge! 
 Hope you start to feel better soon 

take care

Elaine

Thanks Matteo for taking the time to reply.  I too am an expat.  Been in the UK for over 20 years, but still a very long way from my family and childhood friends.  It can feel a bit overwhelming, as I feel I need to 'keep strong' for them over there, as they can't get to the UK because of covid.  So everything is done by devices so must be positive and smiling at all times!

Also, the family is still recovering from losing my Dad in 2019 to melanoma.  So I understand their worry about not being near, as I have been in their shoes not long ago.

I hope you are taking care of yourself, as you are only a week out of hospital, so still right at the start.  But I hear you about the well wishers..  They can be a bit bothersome and quite often nosey with all their kindness.  It's a lot of effort to reply to them, then you feel guilty for feeling that way!!

Much love

Jenny

Hi Dani

Thank you so much.  Your words have hit a nerve.  I get exactly what you are saying.  We lost my dad to Melanoma in 2019, and it all happened pretty quickly.  And I hate the idea that he 'lost his battle' as he did everything in his power, and bravely at the end decided to pull the plug and withdraw treatment as he knew it was futile, and died on his own terms.  That was empowering. Not losing anything but rather gaining and retaining his dignity and his wishes. And he also said that cancer wasn't a journey for him.  As journeys end in a destination and the destination for him was not one that he wanted to go to.

I think this is also playing about in my head, and yes, I probably still need to come to terms with having had cancer.  I also had Covid thrown into the mix too.

I am very conscious that I parked the emotional stuff as that is my coping strategy, and dealt with the immediate physical healing as that was needed and something to focus on.  I guess now is the time it is starting to rear its head.  Which then gives out to problems with regards to everyone sees me, and how well I'm doing, and can't see that actually I am probably worse now than I was when in ICU (if that makes sense).

I also wish there was a group where I can meet other people like me in person.  Someone who gets it.

x

Jensta. Where do you live.? There may be a local group I can find for you 

Hi Elaine

I get the freak thing!

I was in Lidl getting the shopping, and as packing unconsciously said 'Ow' as my shoulder is knackered after the surgery.  The cashier asked if I had a sore shoulder and I said yes, and pointed to my neck and said I recently had surgery.  As I pointed the end of my arm scar showed out from my sleeve.  The poor girl looked horrified, and I felt horrified as I think she thought I had done it to myself!!  I wanted to scream at her that I hadn't, that I had cancer.  Instead I finished packing mortified, and went to the car and cried. lol

I walk my dog most days, then have to rest and that annoys me as i love walking with him up in the hills etc, we used to walk for miles.  Now I'm lucky to do 2 miles, and need to rest for the rest of the day!  I find nature very therapeutic and healing.  I also listen to 432Khz music.  It was soo helpful when in hospital and have listened to it since home too.  

I wish I had your energy for housework lol.  I just can't be bothered.  That's why I feel like I'm going backwards, as I had more energy and more oomph to do things a month ago.  Hopefully with more sunny days coming (I live in Scotland so they aren't that regular!), I can get out in the garden and enjoy the birdsong, the flowers, and read in the sun

xx

Dani I'm in Scotland

Jenny