The First Chemotherapy Session

 

Thursday June 25 2020 First Chemotherapy session

The consultant had managed to book me a chair for a short session of chemo. Normally I would have two drugs but because of the lack of space and time this week I would only have the one drug and that would take about half an hour or so to go through. She wanted me to start the treatment as soon as possible.

The room had about 4 chairs in it and a nurses station that led to another large room with another 4 chairs. It looked like a surreal hair dressing salon where instead of hair driers we were attached to drips, Bizarre!  It was a chatty, friendly and relaxed atmosphere. Lots of nurses rolling around on their wheeled chairs to deliver the drugs to the patients. Opening drawers full of syringes and preparing the cocktails of drugs for each patient. Each individual item wrapped in paper or cellophane. There was an element of opening of presents in there somewhere. Lots of putting on and binning new and used plastic aprons and face masks. There was quite a turn over of patients.

I was given a pill to help the nausea and 4 tiny steroid pills as well before starting the treatment. Then they put a cannula in. It is a needle that is held in place with some plasters with various tubes coming out of it . They attach the saline solution to one of the tubes and the chemotherapy drug to the other tube. The saline dripping through continually keeps the vein open all the time. Luckily needles don't bother me and the nurse did say “I had lovely veins”. I was read out all the possible side effects of the drug and told to tell a nurse if I felt at all unwell or sick. I was told that some people have all of them, some people have some of them and some have very few side effects, you just don't know how your body is going to react to this drug.

Luckily I had managed to finish all my recording and mixing projects before my first treatment. I only had one more song to record and a one minute lock down video to make. I thought I might be able to complete those in a weeks time.

After the steroids had worn off I took paracetamol and those tiny metoclopramide pills for nausea.

My friend had come to stay and look after me and after a few times of haphazardly forgetting to take pain killers I thought to set an alarm at 12.30am 6.30am 12.30 pm and 6.30 pm. It was a good system and has worked ever since. I managed my swollen belly much better and slept half sitting up which is better for my lungs. Perhaps my feeling better had to do with my coming to terms with what was happening to my body and why, and learning to manage the pain relief better. It also has to do with the fact that I had started the treatment and it really was not as scary as I had imagined it would be.

The cancer research has come a long way, so managing the nausea and sickness side effects from the chemo is very good these days. My imaginings had come from Hollywood films where people had cancer and were vilely ill. I was so relieved that I felt OK and my experience was nothing like the exaggerated drama in the movies. That is not to say that I know some people have a much more difficult time with the treatment and my heart goes out to them.

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.

Some kind of Cancer

 

Thursday June 4 2020

Turning up at the hospital and trying to find the right department and the right floor or even the right door was a mission in itself. My sense of direction is pretty much non existent at the best of times. Because I was in such a heightened worried state and so unused to being anywhere near a hospital, I took quite a few wrong turns before finding where I was supposed to be. I would ask directions but immediately forget them whilst saying Oh yes thank you nodding my head enthusiastically to the passerby I had accosted. Then there was the waiting in the waiting room and wondering what was going to happen next. By the time I was called in I had actually calmed down a bit.

A month after the first symptoms appeared I now had some answers. The consultant dressed in visor, face mask and complete coverings had the difficult job of telling me that I had a 10cm growth on my ovaries or possibly 2 growths rolled into one. I also had a growth on my liver indicating that it might be a second stage cancer. There was no doubt that it was cancer because of my C125 number of 1600. I was told that it had probably been growing for sometime even before I had any symptoms. Because there are no nerve endings on these parts, there is no way for the body to let you know something is not right.

At this stage they did not know what kind of cancer it was and which was the original one. The cancer treatment would be tailored to my specific cancer. I was given two books and some other literature all about cancer produced by Macmillan Cancer Support. It was sobering reading but well written and very clear. I was give a number to call that was available 24 hours in case my symptoms suddenly got worse or I needed help or reassurance or stronger pain killers. The nurses emphasised not to hesitate to ring the 24 hour help line even if it felt like a simple question. What a fantastic service!

Monday June 8 2020

I spent a day in hospital having a CT scan and a biopsy (with a local anaesthetic) taken from the tumor on my ovaries. There was also a discussion if fluid should be drained from my abdomen. Apparently fluid happens as a result of the cancer and floats around inside the peritoneum. “The fluid is called ascetis. The perintoneum is a tissue that supports the ovaries and fallopian tubes. The peritoneum helps protect the organs in the abdomen and keeps them in place.” (Macmillan)

It was decided that I did not have enough fluid to drain and it was better not to attempt it as there was risk of infection and also it was in an awkward place behind one of my organs.