The facts - Stage 4 Ovarian Cancer

 

Thursday June 18 2020

I had a telephone consultation with the chemotherapy consultant. I had had a week to get to used to the idea I had some form of cancer. During this week my thoughts were all over the place. I was shifting from thinking I was glad I had made a will that was very simple, just leaving everything I owned to my son;- thinking I needed to do my tax returns before starting treatment;- wondering how and when to tell aged parents without causing too much distress;- wondering how to tell people I work with;- trying to shift recording sessions to happen before the start of treatment;- wondering if I would be well enough to sing and play instruments for the recordings;- wondering who of my closest friends to tell and when. Such a jumble of tasks to accomplish in an emotional state. I made arrangements for a friend to come and look after me after my first treatment. This was a week of difficult phone calls. By the end of the week I felt that I was truly loved and really well supported by friends and family. I felt so fortunate to be in this position. I knew that I could pick up the phone and call a number of people to talk to if I was feeling desperate. I live on my own but I felt surrounded by love, help and support if I needed it.

So I have to say that both consultants and the specialist nurses, the NHS and the organisation around my case were first class. I could not take anyone in with me to the consultation because of Covid 19 so I was on my own receiving this information. My sister was there in the room with me on my phone via Whats app. It was shocking, difficult and hard to hear the news. I attempted to take some notes and ask intelligent questions but my mind was flailing around trying to make sense of the information I was being given.. 

There was no rhyme or reason why this thing had happened to me and that is one of the hardest thing to accept. It just did end of story! Both consultants were patient and clear with the information they had to impart and did not mince their words at all and just told me in a straightforward way, the facts, the situation I was in and what they could do about it.

The facts  Stage 4 Ovarian Cancer

Now they had all the information they needed and gave me the full works. So it was ovarian cancer in both ovaries, inside the pelvis, in part of the womb, in the fallopian tubes and there was a thickening of the peritoneum. Normally it looks like cling film but apparently mine is all lumpy and uneven. It had spread to my liver and to my spleen. There was fluid on my lungs. This could be the fluid being pushed into the lungs from my peritoneum or there might be cancer within the lungs.

The good news is they know a lot about this kind of cancer and they have chemotherapy that works for it. There was no possibility of an operation to remove the tumors because there were so many of them and they have attached themselves to my liver and my spleen so chemotherapy was the only option.

They cannot cure you but they can shrink the tumors. After reeling from the list of places my cancer had metastasised itself, I asked "If it comes back after the chemotherapy treatment has finished is that the end of my story?" I was told that the cancer is likely to come back 12 to 18 months later. If it does then I can have another round of chemo to shrink it all again. The good thing is that they have a number of different drugs and combinations they can try if the first one does not work. At this point I remember asking what stage cancer I had and I was told I had stage 4, basically the full blown version. There are no numbers after 4! A wry thought popped into my head, my mother always told me I did not do things by halves!

It was devastating to think that I could have all the treatment but still the cancer could come back and kill me. 2020 was my 60^th year. I was planning all kinds of treats to celebrate that number then Covid 19 happened and so then what?  Should I start organising my funeral? It would have to be a big jamborie with loads of music and dancing of course. What about all the personal letters and e mails and stuff I would not want anybody else to read after I was gone? silly photos? spicey love letters? What about all my personal crap I'd leave for my son to sort out? What about all my passwords to close down all my internet accounts? Would I not live long enough to see any grandchildren? How would my 88 and 85 year old parents cope with burying their daughter? How would my sister deal with it all?

I had prepared my house for sale (doing DIY jobs at the beginning of lock down) with the idea I would move closer to Aberystwyth to be able to take care of aged parents. (Huh fat chance if I was already dead and buried). I'd had a couple of estate agents around for valuations and had started looking at houses in West Wales. Because of Covid 19 the market was now shut down. I could not even think of attempting to move house until after treatment and recovery time anyway.  2021 would be  the earliest I could even think about moving. Time was stretching out in such a vague way. Did I have a couple more years left to live? or 5 years? or 10 years with bouts of treatment in between being OK? Nobody could answer that question.

By now I was waddling round the house with a really distended sensitive stomach. Liquid high up around my stomach, under my ribs and a strange gurgling in my lungs when I lay down. I could not lie down flat anymore as that made the gurgling worse. Sleeping half sat up in bed. Very strange. Very little energy to do anything, perhaps because of the shock of the biopsy and the news. I had lost more weight in my legs so my trousers were all loose on me and kept on falling down. Stick thin legs and a big belly Oooh yes very attractive!

During this time I'm sorry to tell you that having a poo was a major event. Just before needing to go there would be an intense feeling woosh all over my body and venting my bowels would eventually ease the painfully hot sensation. After going I would have to lie down and recover waiting for the sensation to ebb away before doing anything. Sometimes this happened once or twice a day and sometimes I would visit the loo 4 or 5 times in a morning. Mostly after that I was OK for the rest of the day.