Home Cancer Expert Q&A Hub Managing Day-to-day Life with Cancer

Moving on

FoxeyFoxey Posts: 3

I have had secondary cancer I have finished my treatment and with . counselling am trying to move on and get my life back but it's hard, I'm sure there are lots people out there can relate to me , this week I joined a support group it was good to talk to people who understand xx

Comments

  • RobertARobertA Posts: 1,162 Community Admin

    @Foxey

    Hi Foxey

    Lovely to hear from you.

    I think the reality is that a cancer diagnosis is not the same as that of any other type of illness. Sometimes the emotional reaction comes afterwards, when you are released and life is supposed to slowly go back to normal again.

    We are usually coping with lingering physical and/or emotional effects and in some ways we have changed. My life did not go back to normal as I had expected it to after treatment and I became severely depressed. I was advised to checkout MacMillan Cancer Support. They were very helpful and supportive and gave me access to a counsellor who gives her time free of charge, and slowly but surely she helped me to find a way through. MacMillan is a wonderful organisation and it is lovely to pop in for a chat and a cuppa with people who understand how you feel. 

    I am also a member of a Prostate Cancer Group and a Hope Group made up of men and women living with cancer and of course, this lovely Community.

    LiveBetterWith is full of courageous, caring and funny people, new friends who don’t mind when you are having a bad day and who celebrate the good ones with you. We also have the Cancer Coffee Break where we chat about our hobbies, animals and other non cancer related topics. You are very welcome in our group and I hope you will keep in touch.

    Rob

  • VeritercVeriterc Posts: 19

    I agree that a cancer diagnosis is different, and suspect this is because the drugs we are given can produce so many side effects. Doctors are over-worked, and don't have time to give us the individual attention we need to help with these - so often we are left floundering.

    As a medical journalist I found much medical information that helped with side effects, so I set up a website www.aftercancers.com to pass this on to others. I am not interested in 'miracle foods' etc. but information and research that comes out of hospitals, etc. - especially from France, Australia, USA, etc. where their survival rate is better than UK. Hope it might be useful for some on this Forum.

  • jacksprat_x1jacksprat_x1 Posts: 306 ✭✭✭✭

    @Foxey @RobertA @Veriterc

    Dear Friends,

    I am very interested in this post and will look up aftercancers.com website.

    You are so right that our Consultants are so busy that sometimes our residual side effects are often met with a blank stare! I found this particularly with my peripheral neuropathy and fatigue and was told that should clear up after chemo finished, but as I discovered it hasn’t.

    I am recovering from bowel resection, colostomy and chemo. 15 months since op and 7 months since chemo stopped and have been lucky enough to have had 2 clear scans and clear colonoscopy but I still feel out of sorts. I think I thought just get chemo out of the way and continue where I left off. Slowly I realised that we are probably never the same again. I used to hear that from people on here but didn’t really fully appreciate it, till now! Family, friends, GP have all said don’t go back to work yet! I’ve missed 3 self imposed deadlines to get back to work. I’m just so exhausted! Guess its my new normal! Yesterday my husband and I started to prepare spare room for decorating. I sanded paintwork for about 10 mins and had to lay down on the carpet! It amused my husband anyway!

    Foxey I can relate to what you are saying. I have felt guilty for feeling down and anxious when I have been fortunate enough to have survived the op, and treatment. My GP has given me an antidepressant and sedative to help me sleep but I have been reluctant to take it and may try MacMillan for some counselling help if available. It’s funny how it catches up with you. I think whilst you are being treated the focus is to stay strong, be positive only to realise how much it has affected you in the long run.

    Without the support and encouragement of the good people here it would be hard to move on.

    I wish you all a peaceful evening.

    love Jackie 🙋‍♀️X

  • VeritercVeriterc Posts: 19

    Jackie

    What you say hits the spot! Neuropathy is nasty, and as far as I can find out, the NHS tries to pretend it doesn't exisr - but it does. You might like to look at American cancer hospital websites, or ASCO. These all acknowledged Neruopathy as a long-term side effect of cancer treatment years before The Royal Marsden here did - they didn't recognise it until I produced pages of print-outs from ASCO (American Society of Clinical Oncology). If you go to Categories on right side of Home page of www.aftercancers.com and click on American websites, they are listed there. I make use of them often - advice is free and user-friendly! Good luck! Verite

  • jacksprat_x1jacksprat_x1 Posts: 306 ✭✭✭✭

    @Veriterc

    Thank you Verity, I will do some reading. Hope you are having a good weekend. Sunshine is very welcome here on the East Coast!

    Lv Jackie 🙋‍♀️X

  • RobertARobertA Posts: 1,162 Community Admin

    @jacksprat_x1 @Foxey @Veriterc

    Hi Jackie

    I think that you are right inasmuch as we never really feel quite the same again after cancer. As you know, I have had issues with anxiety, depression and tiredness and I think that there are two sides to cancer, the disease itself and the emotional and physical side effects. I think that the happiness that treatment is over can be tempered by uncertainty, tiredness and the pressure we feel to get back to normal even if we know we are not ready.

    Haha, after everything you have been through, I would not say that you are lucky at all. It will have taken enormous fortitude and courage to keep going through everything you have coped with and for such a long time too. You probably need time to come to terms with what you have been through and reflect.

    I actually take Sertraline tablets as prescribed by my Doctor. They are not a 'Happy Pill'. They simply boost the low serotonin levels in my brain and help me to battle anxiety and depression. It did take a couple of weeks before I started to feel better, but they seem to help a little. I also still see my counsellor once a month which helps to reaffirm that the way I feel is not uncommon.

    Will chat soon.

    Rob x

  • VeritercVeriterc Posts: 19

    With all the millions £s that we donate to cancer research, am I being selfish and wishing a little could be spent on reseaching long term side effects, and what to do about them? So many of us have issues, paticularly with fatigue,you would think that some bright researcher might pick up on this !

    Thanks for comment re weekend - we are in middle of counry,but get hit by every gust of wind that blows, plus each winter the flood plains around the Upper Thames are flooded to keep London safe. Very damp and everyone seems to have cough - but Londoners aren't flooded!

  • RobertARobertA Posts: 1,162 Community Admin

    @jacksprat_x1 @Veriterc @Foxey

    I thought I might mention our ‘Ask the Experts’ section as we have @Untire_App who are experts in the issue of fatigue. They are always happy to discuss any issues we have in that area.

    Rob x

  • jacksprat_x1jacksprat_x1 Posts: 306 ✭✭✭✭

    Thank you Rob I will take a look at that.

    Hope the weather has improved for you today as it has here.

    Take care

    Lv Jackie x🙋‍♀️

  • Untire_AppUntire_App Posts: 20 Cancel Related Fatigue Experts

    Hi @jacksprat_x1 @Veriterc @Foxey,

    @RobertA Thanks for including us in the discussion. It is very common to expect and anticipate that life will return to normal after treatment. Often there isn't much discussion on the "new normal" after cancer treatment or preparation on the side effects that can linger for quite some time. Depression, fear, anxiety and sleep issues are common during and after treatment. These can contribute and increase cancer-related fatigue making it even more challenging to get back to daily life. It can be hard to adjust to life after treatment. Don't forget that you persevered - from the diagnosis, through treatments and now post-treatment. You have been through a lot but you will continue to get through it. Be kind to yourself and remember to take it one day at a time. Things will improve and life will slowly return to a "new normal". Others have shared similar stories like Alison. https://untire.me/alisons-story/ Most importantly, you are not alone! You have a wonderful LBW community here (and the Untire team) to support you. The Untire app helps educate about all the different areas that impact fatigue and how to manage through it. Please do let us know if there are any questions we can help with or if there is anything more we can do to support you. Do keep us updated on your journey xx -The Untire Team


    Facebook - https://www.facebook.com/UntireApp/
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  • VeritercVeriterc Posts: 19

    Thanks for your supportive words, and I know others like yourselves give us tremendous support for which we are very grateful. The one thing that bugs me is the lack of support from medical professionals, who should know better. The way they try and 'overlook' side effects, leaving us thinking it must be our fault that we get these weird, uncomfortable side effects, can leave us thinking it is all our fault - which isn't helpful. Eventually we work out that it's NOT down to us, but side effects that are normal - but a lot of time is wasted which doesn't help us.

  • RobertARobertA Posts: 1,162 Community Admin

    @Untire_App

    Hi

    Thanks for your great post. Your comments, and Alison's story are comforting as they sound so familiar to many of us.

    Rob x

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