Hello all, and thank you already!

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Hi - diagnosed earlier this month, and will be starting treatment in a week. Reading your posts has already helped so much! 

A quick introduction – I live in the US, I’m female, and just over 65. This is my 4th cancer. 10+ years ago, I had ovarian & endometrial cancer - both stage 1, luckily. Then I got breast cancer. I opted for a bilateral mastectomy, thinking I’d avoid radiation and the risk of another bout with cancer. (Nope!)

This is a scary one – not because of risk to life, but because of its possible (likely?) impact on quality of life. So I’m very grateful to have this group to turn to and learn from.

Thank you and best wishes to all,

MEW

  • Hello MEW and a warm welcome to the forum, I have anal/bowel cancer "untreatable", though there are many on here who are having or have had treatment and are doing well who will happily support you in any way we can, though with your history with cancer there are probably things you could teach us, take care.

    Eddie

  • Hello Mew

    A warm welcome to the forum, although I am really sorry to hear what brought you here.  You have really been through the mill in the last 10 years, and now to develop this...

    There are a few people on the forum who have gone right back to their old lifestyle, also many who live with the various side effects left by radiotherapy.  I would say my quality of life has definitely been affected BUT I am so happy to be here and living life, albeit a new normal from the life I had before.  Coincidently I had a long chat with my husband last night and we spoke about what could be happening to our bodies anyway as we age and doing what we can to keep ourselves healthy.  So when things healed for me I went back to a three-mile daily walk with my dog and it definitely eases the hips.

    I am not sure how much you have read but what I found indispensable (probably the most important item for me) was a Sitz bath, a plastic bidet that sits on the loo and when when filled with luke-warm water is so soothing when irritation starts.  I even used mine for bowel movements, somehow it was less painful under water, it was easily emptied and disinfected.  The side effects come on very gradually and peak around two weeks after treatment ends, and then things start to improve.  It will help if you have lots of ready meals and you will need lots of rest, the body takes a lot of energy repairing itself after radiotherapy. 

    And painkillers - other American forum users have found that some oncologists don't prescribe pain killers in the way that we do in the UK.  It might be an idea to talk to your team now and find out what they will prescribe should you need it.

    And we are always here should you need more information and support at any time - we have all been through it. 

    Irene xx

  • Eddie,

    Thank you for your stirring message and for sparking the memory of the one thing I DID learn from my earlier experience.

    Before surgery revealed I actually had 2 separate cancers, the Drs. assumed my ovarian cancer had metastasized. I spent several weeks living with and processing the idea that my life (as I knew it, at least) was over.

    It took a while, but I finally recognized & accepted that none of us gets out of here alive! :) Our risk of dying is already 100% - and cancer doesn’t change that.  All it does is bring us awareness of how short and precious our time here is.  And I began to see that as a gift, a blessing.  I remember asking myself which I would choose: to live to 90 without that awareness, or to die in my 50’s with it.  It was an easy choice and brought me a lot of comfort.   

    I’ve always known I was lucky to get that “for free” – to unexpectedly survive and return to a completely normal life. But over the years, it seems, that temporary reprieve has dulled my awareness. I have some work to do to get it back.

    I thank you so much for your gentle reminder and hope you’re finding peace and joy in living with your own awareness.

  • Irene - Thank you for the response and great information!  I got a sitz bath back when I thought this was hemorrhoids but haven’t used it since (until now!)  And YES although I never would’ve thought of it, it makes so much sense that it would ease the awful pain of BMs. Thank you!

  • Hello and welcome to the forum Mew. You could certainly tell us a story or two about your cancer journey. Having one cancer is hard enough but to have to go through this four times I just couldn’t imagine. I suppose when we have these difficult times ahead of us we have to just get on with it and the human body can be incredibly resilient. I am 68 and two and a half years post treatment and during my first consultation with my oncologist she said to me, you are still young and you will get through this after giving me the long list of possible side effects. All I could think about was how was my life was going to be when I lose bowel control. My treating team were very supportive during the six weeks treatment and also these lovely people on here who always had lots of tips and advice along the way. One thing that does spring to mind when reading these posts are that we come on here because we are maybe struggling or scared of what is happening but many probably don’t experience as much and don’t find the need to come here and post at all. I am quite lucky to have a local charity that provides therapy and fitness incentives to improve our health. My healing has had a couple of up and downs but apart from having to watch my diet as I react to certain foods my life is pretty back to normal. Glad to hear you have the famous sitz bath. I religiously did pelvic floor stretches all through treatment to help with stiffness. I was prescribed morphine during my difficult period when treatment finished and also took paracetamol and ibuprofen. I did worry about getting addicted but my team insisted that if it’s taken for pain it’s very unlikely and I was closely monitored. At the start of my treatment I used a gel called StrataXRT which you can use during radiotherapy sessions and not have to remove which helped my external skin hold it together. Our NHS do not provide this and I had to purchase it privately. One of our UK hospitals trialed it and it had great success but due to its cost they stopped it which was a great shame. We are all here for you so any questions just fire away. 

  • Hi MEW, I couldn't agree with you more, even though cancer is a horrible disease it does bring out the best in many of us, I have become so much more empathetic and  tearful, "in a nice way"  I focus on the important things in life, mostly family and help out and do a little fundraising for two local cancer charities and give myself time to get the support i need to help me on my journey, good luck on your journey.

    Eddie

  • That is a life well-lived! Sending love and gratitude for the difference you‘re making.

  • Thank you for the great information and suggestions! So glad to hear you are well!

  • Hi there   & another warm welcome to the Macmillan online community although I’m so sorry you’ve had the need to find us & also that this isn’t your first brush with this damn disease. 

    The treatment is short & sharp but it’s doable, I’ve just passed 6 years post diagnosis & will be 6 years post treatment in June & I’m doing well, I’m back doing everything that I was doing prior to my diagnosis & have little to no long term side effects. 

    If you have any more specific questions or concerns don’t be afraid to ask, we’re here to support you however we can.

    Nicola 

  • That’s wonderful to hear! Thank you for sticking around and encouraging the rest of us!