Hi everyone, I am new here and, despite being diagnosed 9 years ago with ovarian cancer, feel now is a good time for me to finally ask for support.
I had a total hysterectomy in 2012 followed by chemo and got an ‘all clear’ in January 2013. I wasn’t called for any scans beyond that date. Apparently it wasn’t hospital policy. Then, on the day of the ‘Beast from the East’ in 2018 is was told the cancer had come back. This time in my ureta. Because it had totally blocked the ureta it had killed the left kidney and was creeping into my bladder. Two consultants told me the cancer had been there some time (I am stage 2) and if I had CT scans it would have been picked up much sooner and the kidney and the half of my bladder I had removed could have been saved. More chemo followed. I now have a tumour on my left pelvis on the psoas and one actually in my vagina. To shrink these I have had two courses of radiotherapy in the last 6 months. One lot of 15 and the last lot of just 5 which I finished 3 weeks ago. All treatment is palliative, a word which frightened me at first but I now understand that in my position it means I can still be treated but not cured. I am actually ok with that.
I feel very down at the moment which is not like me. I know this awful pandemic is not helping but I can usually bounce back. I am weepy at the drop of a hat. I have put on too much weight, not helped by the awful tiredness I am struggling with. Finding even going for a walk is hard work. Because I have just half a bladder I am up 5 sometimes 6 times a night (which is an improvement by the way!) My partner can hardly look at me because of my weight although he is being kind in most other ways. I am really struggling at the moment. I shouldn’t feel like this. I have a lovely home. My son, daughter in law, daughter and son in law are being wonderful. Am I being over sensitive? Writing this I have tears in my eyes. I dont know where else to go for advice and I am sorry this has gone on a bit.
Hi and warm welcome to the Macmillan Online Community although sorry that you had to find us and especially sorry to hear about the challenges you are facing.
Talking with others who are walking the same type of journey can help you navigate this challenging time.
The Online Community is organised into various support groups. This first list is for our Cancer specific Groups and the second list is for our various other Cancer experience groups. These groups are good places to connect with patients and families navigating the same type of journey.
Have a look through the lists then to join a group(s) just click on the link above then choose 'click to join' or 'join' (depending on the device you're using) on the page that opens.
You can then introduce yourself by putting up a ‘New Thread’ or hit the box with the X on the top right (phones), you could just copy and paste the text from this your first post. You can also join in with existing ‘Discussions’ by clicking on 'reply'.
It’s always good to talk and the Macmillan Support Services provides lots of information, support, financial guidance or just a listening ear.
Most services are open 8am to 8pm, 7 days a week and it's free to call on 0808 808 00 00 have a look by Clicking here to see what is available and we also have our Ask an Expert section, but do allow two working days for replies from our expert team.
All the very best
