Hello, this is my first attempt to explain and share my experience. Having cancer is a full time job with the paperwork, appointments, time management and so on. I am on my own with no support in any of these tasks. It is a shock to find out and then it is a roller coaster and having looked back on what happened. Having surgery was nothing compared to how chemotherapy damaged me physically and mentally. I finished CAPOX in May for my rectum cancer stage III. Thanks to Macmillan, I was warned about side effects; there are 40 of them, but you won't understand them until you experience them yourself. I had about all of the side effects during the treatment and afterwards. I am in remission but the late side effects keep disturbing me where I have been reasonably stable with my bowel condition etc. The damage to my nerves happened in my first cycle because I had a 100% dosage which was not good. As a result, I have peripheral nephropathy which has not eased after five months. We are different and some people don't experience any of them and I am the unlucky one who is worrying about what comes next. Do I get rest from this worry?? Any suggestions are welcome.
Hi Wallingford and a very warm welcome to the Macmillan Community but so sorry to hear about your journey to date.
I know from experience having been on my cancer journey for over 26 years (first diagnosed in 1999 at 43) with my first rare, hard to treat type of T-Cell Non Hodgkin’s Lymphoma (incurable) then my second aggressive stage 4 T-Cell Non Hodgkin’s Lymphoma appeared in late 2013…… I also have Asbestosis….. this appeared in 2013 and have recently been diagnosed with Prostate Cancer…….. that navigating this journey can be such a stressful and challenging time but talking with and getting support from people who have walked or are walking the ‘exact same' journey can help a lot.
The Community is actually divided into dedicated Support Groups (Discussion Rooms) so can I recommend that you look to join and put up your own post in our dedicated…….
Bowel (colon and rectum) cancer
…….. support group.
This group is a safe place to talk to others with a similar diagnosis, treatment experience, to ask questions and get support.
To connect in with the group please click on the link above……. then once the group page opens you will see a [Black - Click to Join - Banner] at the bottom of the page, click in this box and this will then confirm that you have joined the group.
You can then introduce yourself to the group by putting up your very own post by clicking [+ Create new post] or [+] in the top right of the group page.
You can copy and paste the text from this post into your new post.
As always the Macmillan Support Line is open between 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00…… this service provides cancer information, practical information, emotional support, benefits and financial guidance or just a listening ear.
Talking to people ‘face to face’ can be very helpful so do check to see if you have any Local Support in your area, do also check for a local Maggie's Centre as these folks are amazing.
Do get back to me if you need further help navigating the community.
Hi Robp701 and a warm welcome to you.
If you care to have a look through this link…. Cancer Specific Groups …… you will find all our dedicated cancer support groups listed.
These groups will connect you up with people who are on the exact same journey.
