I don't want to 'go back to normal'!

Hi, I'm new to this group and am now 6 months post treatment. I was diagnosed in March 2020, just as the pandemic was taking a grip and lockdowns were beginning. There were lots of  delays to the tests/scans etc and later to the surgery and the whole treatment took longer than it would have pre-pandemic. Nevertheless, I had excellent treatment and a dream team of professionals and here I am, just getting back to work after recovering from pelvic exteneration surgery which followed 5 weeks chemoradiotherapy. The histology results post op were very positive and I am now cancer-free, apparently.

it's been quite a road, especially with Covid issues on top. I think what I am experiencing is not unusual, but scanning through the posts in this group, no one has mentioned one of my main preoccupations, which is that while I am almost fully recovered, I am searching for something different in my life to give the last 18 months some meaning. I don't think I want to make drastic changes to my job and certainly not my relationship with my partner (who has been extraordinarily supportive and caring throughout), I am more looking for changing things about myself, how I live my life, how I think about things, how I behave.......I just don't know, what, but I know I need something to be different in a tangible way!

I am having some short-term counselling at the moment through my work. but it's not quite giving me what I need, although I have found it helpful in some ways.

I'd be delighted to know if anyone else can relate to what I'm on about!

  • Hi  and welcome across to this corner.

    I am sure that many folks will have experienced these thoughts and challenges.

    I have been on my incurable cancer journey since 1999 and only reached any long term remission in Sep 2016. For me I wanted to help others navigate their cancer journey and I put some of my time into supporting on this Community but also on another online support platform covering my type of cancer (Lymphoma).

    I often reflect that the challenges I have faced over my years can actually help others get through their treatments with less stress and lack of understanding.

    I look for some of the other group members to come along with their thoughts.

    Mike - Thehighlander

    It always seems impossible until its done - Nelson Mandela

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  • Hi ,

     I was in hospital for 2 years when I went through treatment and several major operations. Before and during treatment I decided I wouldn’t let anyone walk over me anymore and if I didn’t like something I would say so. Which I have stuck by and if people don’t like it, I think you shouldn’t have upset me and I am not responsible for your actions or feelings. I know it sounds hard but I always use to worry about people thought about me I or if they liked me.

    I also discovered I was very determined. My weight went down to 5 stone bracket and I had to learn to walk again. I was given the all clear, I passed my driving test first time, I bought a car, I was then discharged from the cancer hospital, moved home and now I am starting a degree. I also decided I wasn’t going back to where I worked before I was diagnosed, as I didn’t like the job and the other employees and I didn’t go back.

    Don’t get me wrong, I have had some hard times and like Mike  mentioned he supports others on here and trust me when I say he really knows his stuff and has been a great support and chum for me.  Mike is ace.

    Maybe find something you use to do years ago and take it up, or maybe chat to others who are going through something similar to which you went through. You have been through an ordeal and thankfully come out the other side intact. But do things that make you happy.

    Love and good vibes,

    Lisa x

    Lisa

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  • Thank you Mike and Lisa for responding - clearly you get what I'm on about and that in itself is reassuring!

    I have thought about putting my energy into supporting others with experience of cancer in some shape or form. That's a very tangible way of making my own experience meaningful. You very obviously make a difference to others in this way, Mike.

    I love your spirit, Lisa, and the brave and profound changes you made to the way you live your life, how you respond to others and respect yourself. That's quite inspirational! Good luck with your degree studies!

    One thing the counsellor I speak to has been saying is also about doing things that make me happy - I'm starting to work on that one!

    It's lovely to have such supportive responses and it's very validating. 

    Thank you again

    Osboz

  • Hi ,

    Thank you for your reply.

     I agree with the counsellor and do things that make you happy. It could be an old hobby which you haven’t done for years, or travelling, studying, fitness, etc.,.

    I do think you idea of helping and supporting others who are going through cancer and all the treatments and operations which come with it, is a great idea. I didn’t have any support like that, it was my mum and dad who helped and supported me. 

    Mike , visits his Maggie’s Centre and he finds it very good and helpful. Maybe you could contact your Maggie’s centre, it could be a good place to start.

     I have been looking at my English Literature course and I nearly fainted when I looked at the getting started module, ha, ha, ha. I will let you know you how I get on.

     I do get what you mean about not wanting to go back to “normal”. This is our new normal and thankfully we have been given a chance to change things for the better.

    Sending you love and good vibes,

    Lisa x

    Lisa

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  • Thanks again , Lisa. I really am much encouraged by your words.

    I've just googled Maggie's centre, the nearest one to me is 25 miles away, unfortunately :(  Pity, cos I really like the sound of it!

    I know there is/was a cancer centre in the town where I live but all services were suspended during the pandemic. I think I'll check them out and see if they're up and running again! 

    Oh, and I have gone back to knitting that I used to do years ago and I took up jigsaw puzzles during lockdowns! I got stuck on a slightly over-ambitious knitting project and abandoned it for a while. I must get back to it again!

    Thanks for the encouragement! 

    Osboz X

  • Hi again , it’s good that you found Lisa’s  and my post helpful. First Lisa…..

    trust me when I say he really knows his stuff and has been a great support and chum for me.  Mike is ace.

    Cheque is in the post ‘chum’ JoyJoy

    I did training in counselling in my past life (Further Education Teaching and Student Care) and your counsellor has hit the nail on the head “doing things that make you happy”

    I see the Cancer journey to be in three parts. First is the trauma of diagnosis, this often can be quick but for others like myself 21 months.

    Then comes treatments, again this can be oh so different from weeks to months and even years - in my case 16 years…… and this part can be full of emotions, struggles, heartache, grief, lost dreams…… the list goes on….

    Then the final part of the journey is the post treatment recovery and discovery. This is not an area our NHS great at but places like Maggie’s Centres and even this community are.

    My local Maggies Centre gave me some great support about 5 years back when two very good friends died of their type of cancer, all very quick (4-6 months) and threw me into a total ‘survivors guilt’ spiral…… Why did I survive and they didn’t?

    One very helpful tool (picture) my counsellor gave me was the rusk-sack picture. We all unknowingly get given an invisible rusk-sack at the start of our journey. We unknowingly put our whole life into the ruck-sack and start to live day out day in 24/7 with it on our backs. Every appointment, test, scan, treatment our dreams, ambitions and all the words said over us (good and bad) go into the ruck-sack…… over time this gets heavier and heavier, we get physically and mentally fatigued.

    Then one day you are told “Go live your life” and this instantly transports us into a parallel universe - you can see your old life but regardless what you do you can not get back on that same path.

    My Maggie’s Councillor introduced me to my ruck-sack and we sat on a number of occasions and emptied it ALL on a table and started to go through the stuff. I picked up one thing at a time and was surprised at the things I had been carrying on my back for years.

    We unpack and packed the ruck-sack a few times over a year. We dumped lots of ‘cancer journey’ stuff that had been collected and some stuff that I once thought to be important was also dumped.

    So some things from my old life are still in our lives but various aspects of our old life that were once seen as important were put in the bin and we don’t miss them.

    The main revelation was I remembered a conversation I had had with those two friends who died. We sat with a whisky and agreed that the last man standing had to go on and live their life to the full in celebration of those who had went before and ensure that they made the path that others had to walk to be supportive and as level as possible.

    Empty out your ruck-sack and have a rummage around, you will be surprised as the the hopes and dreams that make you happy and had forgotten about ((hugs))

    Mike - Thehighlander

    It always seems impossible until its done - Nelson Mandela

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  • Hi again ……

    I've just googled Maggie's centre, the nearest one to me is 25 miles away, unfortunately :(  Pity, cos I really like the sound of it!

    It is interesting how we see things and the importance we can put on things. I stay 4 miles away from our Maggie’s….. there are people in the groups I am part of will do a 3 1/2 hour 145miles round trip (one on a bus!!) for the amazing cancer support that is available Flushed

    ((hugs))

    Mike - Thehighlander

    It always seems impossible until its done - Nelson Mandela

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  • Hi ,

    It is great news you started knitting again and I am like you and I would start big and then realise, uh-oh. But you gave it a go. I use to love to crochet when I was in school and after I was given the all clear I restarted it again and I now do jumpers and blankets. I am currently knitting a jumper and I am learning to read tarot cards too, which I enjoy.

     I am lucky that my local Maggie’s centre is 4 miles from where I live. I did try to go there once but because the car park is small and the staff also use it, I couldn’t park and get in! And the street is all double yellow lines and since treatment my walking and distances are impossible.  Your local cancer centre sounds like a good place to start and hopefully they have re-opened.

    Like Mike  mentioned with his analogy regarding the ruck sack. It is true. We have to find our new normal. I know I couldn’t go back to the way things were because I have changed so much now and I wouldn’t go back, as I know have a lot of self respect, where as before I let people treat me badly. Plus I am too straight and too the point now.

    This is just an idea, how about becoming a community champion on here, like Mike  is on here. You have the experience and knowledge. Yes, we have all had different experiences and operations, etc., but maybe that is something you may like to do. I am sure Mike would point you in the right direction.

     I hope you have a good day and love and good vibes,

    Lisa x

    Lisa

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  • Hi . I was just about to ask if you’d considered becoming a Community Champion when I saw that  had beaten me too it! You’ve done some brilliant posts on the bowel cancer uk board when I’ve (cheekily) tagged you in for advice and I know the Ileostomy, colostomy and stoma board doesn’t have a champion at the minute? 

     I made the decision after my treatment ended and I had a couple of clear scans under my belt to move 65 miles away to be nearer my husbands work. It meant leaving my job and moving away from my parents and friends but has made a much better work life balance for us. I now have a lot of free time in my hands though and think I’m going to need a hip replacement so feel like I’m treading water until I decide what to do with the next stage of my life. On the plus side at least it’s flat here and I’m getting to see lots of my lovely 3 year old granddaughter!

    Take care

    Karen x

  • Hi ,

    It is so lovely to hear from you. I haven’t heard from you in a while and I hope you well and good, apart from your hip which I hope you will have your operation soon.

    Wow! Moving 65 miles is a big step but it easier for yourself, husband and family and of course, you get to see more of your granddaughter.

     I thought I would let  about becoming a Community Champion on here. I would be interested in the stoma one but I am starting a degree soon and I wouldn’t be able to give being a Community Champion the attention it deserves. Ian     was wonderful at doing that on the stoma side and he knew so much and went out of his way to find out. We have Mike  on here and his knowledge is vast.

     Sending you love and good vibes,

    Lisa x

    Lisa

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