Lost confidence...

Hi Micky,

It makes perfect sense!  We all have the same problem when people ask how you are and then their eyes glaze over when you start to tell them, so you stop..... It can be very disheartening and its times like these that you need forums like the one we are on because people "get it".  I started a phased return to work just before lockdown and one of my colleagues asked me how I was and I said i'm really tired and he turned round and said "but you have been off for a year, how can you be tired"! I just looked at him and shook my head.

I finished my treatment 14 months ago and I still feel tired most of the time.  I now have little bursts of energy where I try to do everything at once then end up tired all over again.  We are our own worst enemies Micky but that's how it is (with me anyway).

Chemo brain or brain fog as you say can be very distressing but at times absolutely hilarious... my dishwasher is now the microwave and I forget from one second to the next what I was about to do or say.  I tell myself to write things down but by the time I get to my pen and paper I have forgotten what it was!!  I'm told it will improve but we will see.

I find you need to have 1 person that you can offload to and MacMillan are brilliant at that.  They have found me a "buddy" that phones once a week for a chat and it really does help.  Don't be scared of joining cancer support groups, we are all in it together!

I hope what I have said helps and I hope you feel a teeny bit better.

Take care and keep in touch .

Janeejanjan 

You’re so very right. It’s a complete nightmare trying to find people who get what the issues are. We’re a herd species and expect other members of the herd to instinctively recognise when we have a problem. Unfortunately they don’t unless they’ve been down the same road, and this can include your nearest and dearest. Which is why forums like this are so very important. Keeping it to yourself isn’t a long term solution. So, the only logical solution is to find like-minded souls who’ve shared, or have empathy with, the same journey. Support groups, online friends and insightful family are the most amazing help in getting through what can be a terrifyingly lonely journey. Micky, you’re normal. Don’t sweat it. There are a lot of us here who have been down the same road as you, so just keep reaching out if you need a hand.  We’re here to help each other as well as ourselves. Stay in touch. 

Hi Micky , I think lots of folks looking at your post will be nodding their heads as they completely understand the post treatment challenges.

I am just coming up to 5 years out from my last treatment but had a very hard first two years post treatments. I can now say that I am happy with the ‘new’ me. I am more reflective, take each day as it comes and see the future as gift.

One of the most important things my wife and I understood was the importance of talking with people who understood and humour those who did not.

I was diagnosed way back in 1999 so have had lots of time to develop a rhythm. I only found remission back in Sep 2016 so lived 17 years having treatment so this past 4 years has involved a new way of thinking because I don’t now have any signs of my cancer so know one would know, before I was covered in open tumours (skin Lymphoma) so most people who I did not know crises the road or stared. 

But I was confident in myself and in the treatment I was having and did see those who said silly things or just stared to lack knowledge or any empathy as I never wanted sympathy.

Have a look at this great paper as it does highlight the milestones in post treatment recovery.

You have found a great corner to find kindred spirits so keep posting.

Mike

Hello Micky,

Just thought I would add something to the thread that has built up from your post.

Isn't cancer complex?  I have members of my family who are in the 'just put it all behind you' camp and others who actually get that this is an experience that stays with you.  Bless them, a lot of the time they don't understand that we are living with what my Macmillan counsellor aptly called a 'new normal' and that will always involve this journey we have made and continue to make.  My approach?  Pick your confidants.  Talk deeply to the people who can make a step towards you and just do the social chit-chat with the others.  Cancer changes more than just your body.  So give yourself the space you need even whilst you enjoy this second grasp at life.

Of course the physical stuff also plays its part.  I've just gone through two years since my bowel cancer surgery and chemo - my colo-rectal nurse told me I have 'graduated' to six monthly check-ups.  Yippee!  But I had a chat about the stamina plateau I seem to be on.  I'm feeling well, doing things I used to and living with my new pet stoma quite comfortably but I don't feel I am getting any better somehow.  Seems bowel cancer survivors don't ever recover their old levels of energy and stamina. So there we are - up on the seesaw, down on the seesaw.  I suppose it might be the effect of having half the digestive plumbing I started with but, whatever the reason, I now need to make some adjustments to keep my energy levels good.  A few more sit-downs, a few less hectic days, but, hey, that is a great excuse to pick up a book, listen to some music, watch the garden and the world go round.  Up on the seesaw again.

So, yes, it does make sense.  And, no, you aren't alone.  But you have time now to work out what next, who next because you are still at the beginning of this nexwphase.  Give it some more time and I bet you will surprise yourself how far you will have come

Take care of yourself and stay safe

So much of this rings true. I’m not cured but managed, I’m finding it hard to adjust to the new normal. My role has changed in work, fatigue and loss of confidence.  Part of me thinks about starting afresh somewhere new that doesn’t know the history.  My employer whilst practically supportive have changed my role without discussion, I know it’s discriminatory but unsure whether to rock the boat, bite the hand that feeds.  My attitude in work is now causing an issue due to lack of engagement in my new role,

part of me would like to change my mindset, I no longer need the promotion, increase in pay but I’m struggling to truly believe it. Any advice on changing mindset to let work go when previously it had seemed so important 

Hello, YoungMan, (apologies but I had to write that didn't I, it's so French and Saunders)

I think everyone on the forum knows what you mean and will empathise with your struggle.  First thing to remember is that 'managed' means you are may well be having some form of treatment and that comes with the usual dose of tiredness and mental fatigue.  Life saving doesn't mean life enhancing really.  We all need to manage that issue and make sure that we are true to our energy levels.  Getting exhausted isn't a help.  But we don't need to apologise, shouldn't have to apologise for it after all that we have been through.  The image of a soldier returning from battle is a good one.  Many of us have been pushed to our physical limits.  So take care of you and your needs.

At work, it all seems so unimportant in comparison to where we have come from.  It takes time to readjust but I don't know if it is possible to view things in the way we used to.  Perhaps the change in role is better for you, even if done in the least encouraging way.  Only you can know how it fits for you now.  You can at least give yourself time to feel your way back into work gently.  A new job would place many more strains and stresses on you and the last thing we need is more stress particularly given the current COVID climate.  So perhaps you could see it as an unexpected, but temporary benefit.

Despite a loss of driving ambition - and sometimes that is what gets us into problems anyway - it is good to get back into the routine of work.  It may not be what you would have picked but doing the job to the best of our ability is a way to rebuild confidence and test what we can do.  It means re-engaging slowly but on our terms by finding out what it is we might want now.  I have found that I no longer feel the driving need for one part of my work, but the more creative side is still a source of pleasure and fulfilment.  In the next phase of my life I feel I need to maximise what feeds me and minimise what doesn't.  Haven't worked that one out yet but it is the next challenge for me and, like you, promotion and pay are not the most important bits of work for me any more.

As for confidence, your body feels like it has just let you down, your world has been re-ordered along with your ambitions and relationships.  No wonder you feel a bit wobbly.  Two years later I still do.  But it is two years later.  I am still here.  So are you and that means you just won the lottery.  Everything else will come if you give it time.  I had some really helpful counselling through Macmillan.  You might try to start there and get a safe space to work through some of the issues.  Hope some of this helps so take care and good luck

I’m just two years since diagnosis and surgery. I’m not the same person I was before but that’s ok. It took me a long time to realise that I couldn’t go back to how I was before. No one told me about the fatigue. I was off sick over a year then finally decided to take early retirement at 58/9. I don’t miss work one bit, as soon as I had my leaving interview I heard nothing from my colleagues. After almost 40 years not even a card or a good wish..

After surgery and radiotherapy I couldn’t understand why I wasn’t feeling better. My nurse said the first year is the worst and then I knew I was in for the long haul. Finding a group at my local Maggie’s finally showed me there were other people that understood and it was humbling to listen to their stories.

Cancer really is life changing. Allow yourself the time and opportunity to only do things which make you happy!

Hi folks, some very good open and supportive posts.

How are you both doing Micky  and YoungMan ?

I’ve just connected with a local counselling service, I have appointment for telephone call today

im too young to retire but work is so hard, especially letting go