Hello. I seem to have survived bladder cancer (non invasive) for which I am …..thrilled…..grateful…..overwhelmed….thankful….euphoric. Why then……..

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…….am I still so frightened, anxious and tremendously guilty for feeling this way?  I've read the very good Macmillan booklet on worrying about the return of cancer, plus the many great posts in this forum.  Intellectually I know my feelings are normal and will eventually fade…..IF there no return of my cancer. But deep inside the feelings seem to be taking on a life of their own. I smile and laugh with my family and friends when talking about and celebrating the good news…….its just a mask and a lie, because I feel like curling up and grieving that something fundamental inside my personality and character has changed, I'm no longer the happy and positive person I used to be pre cancer.  Will I ever get over this anxiety that my cancer will return? I've signed up for a number of online courses, all of them excellent in their own way…..I will just keep going and hope that this feeling of doom will one day go away, or at least be less overwhelming.  Sorry about this rant…….and thanks for reading. 

  • Hi Seamoth

    I totally get how you are feeling.  I finished my treatment a year ago and am currently on 12 weekly check ups. It seems to be a cycle now of having a check- having good news and then beginning on the countdown to the next one. When I finished treatment for a while I sort of felt a bit flat. Yes, the cancer had gone but once treatment stops I felt it was time where I could start processing it all. I was able to do this with support from family and friends. I also have a regular oncology nurse that I see every 12 weeks and that has helped. What I have learnt though is that all these feelings are normal and there is no right or wrong way to feel. I learnt to accept there would be highs and lows and to reach out when I needed to. Through talking with my nurse and others I have come to think that for each month of this journey called cancer it takes a couple of months or so to start to recover both physically and mentally from it. I don't think any of us can just bounce back, unchanged by all of this. I understand about feeling like you put on a mask to begin with, with your family and friends. I think for people who have not been through this journey- it is hard to understand. I tried to think of it that they were pleased for me and meant well. For some closer friends and family they did understand that it is more like a process. 

    Fear of it coming back is always at the back of my mind and any little aches and pains still make me worry- but not as much as they did 6 months ago. I try and look at it in a different way- that it is perhaps good that we notice all these changes in our bodies so that if something does happen then we would act sooner.

    I get the feeling like you are grieving for the person you once were- in a way perhaps we are- it changes you but it does not necessarily mean that you can't find some positive in it with time. That is how I am trying to view it. 

    I recently wrote this about my experiences after treatment and about moving forward. It may help. 

    (+) Life One Year Later- Jane’s story - Macmillan Online Community

    I think doing the courses and finding things to keep you busy can help but what helped me most was being able to talk about how I felt and just acknowledging it all. Feeling anxious, guilty, overwhelmed and frightened- they are all natural reactions.

    Have you considered talking to someone/having some counselling? Macmillan can help with some counselling sessions via BUPA. There is also an excellent Support Line that you are welcome to call if you feel chatting it through would help. However you do it- talking about how you are feeling and what your worries are- it really did help me. I do get that feeling of doom though- it's like to begin with I was just waiting for it to come back, sort of expecting it to but with time I realise that my anxiety tends to come before the check ups, I am actually now doing pretty well, I know what symptoms to look out for and I know that I can call my hospital with any worries. I am trying to keep busy, do new things and becoming fitter- so I am doing all I can to try to stay well. My nurse also said that you have to get used to how your body feels after all the treatments and for what is the new you and what would be signs of trouble. I was also told a good couple of years to start feeling myself again, especially after the chemo and radiotherapy. 

    I hope this helps a bit but if there is anything else you need, then please do ask. Acceptance and acknowledgment of your feelings, time and talking- it does help

    Jane

           

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Jane, thank you so much for your, to me invaluable, reply.  It gave me comfort and information that will help me going forward; rather than backward.  I have read and reread your post and have decided to follow up on your suggestions, especially the Macmillan / Bupa counselling route.  You have helped me to help save myself, and I thank you Pray 

  • I am glad it helped and do give the BUPA counselling a go. There are some details in the link below but if you just give the Support Line a call they will be able to help you. 

    Talking, counselling and support groups | Macmillan Cancer Support

           

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Hi  there is not much I can add to my Jane’s  excellent reply…..

    I come to the cancer journey from a rather different direction as I have lived with and been treated for a rare, incurable but treatable blood cancer for over 24 years…..

    In the first 14+ years the longest remission I ever had was about 9 months before I had to go onto the next treatment my amazing team came up with.

    But back in late 2013 my condition became very aggressive and the treatment plan put on the table was at the time the last throw of the dice as we had run out of options, if it did not work I had a few years on the click…… 

    2 years later I was eventually told I was in complete metabolic remission (still incurable) and I stay that way to this day 8 years on.

    Over all these years the main lesson I learned was to keep lightening the load I carried on my shoulders…… so talking things through with professionals is very important be it the BUPA link that Jane has highlighted or look for any Local Macmillan Support in your area, do also check for a local Maggie's Centre as I found these folks to be amazing.

    One of the things I was encouraged to do by the Maggie’s Team was to look to define how I lived each day, not to let my cancer and the what if’s? define me…..

    In the link to Jane’s story you will also find a link to this great paper After Treatment Finishes - Then What? by Dr Peter Harvey as it highlights the post treatment milestones.

    ((Hugs))

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • Mike, your journey and spirit  inspires me! As do Jane’s and so many others here.  If you all can be so brave and positive in the face of much more serious cancer diagnosis than mine, then ………and with all the support I’ve been advised about……so can I! And I intend to. Thank you all so much for all you do; it’s brilliant and probably life saving.