What I have been up to & the difficulty to support loved ones with chronic illnesses

Thank you for reading my blog. I haven't written for some time, things have been a bit busy and so much has happened since my last blog.

It is September month and as per the image below Ovarian Cancer Awareness Month.

So what have I been up to?

I finished my planned chemotherapy in Cape Town in March this year. Unfortunately the cancer didn't respond to the treatment and the tumours continued to grow. I was told an operation was out of the question and that the only option left was taking a hormone pill.

I wasn't ready to accept that I've reached the end of the road and consulted a wonderful doctor in Johannesburg whom I have seen twice before. She was of the opinion that the tumours should and could be removed and scheduled me for an operation on 17 May. A complete hysterectomy, removal of my ovaries, appendix and two tumours (1,9kg and 1,8kg respectively) were removed. The doctor said they were the size of soccer balls!

Shortly after the operation it became clear that all was not well; my cancer markers started increasing significantly, ascites started building up again and the CT scan showed cancer. I started chemotherapy again at the end of June. I have a wonderful oncologist in Rosebank. As my cancer keeps on recurring his view is we need to balance quality of life with treatment effectiveness. I am extremely grateful that my hair hasn't fallen out this time (touch wood!).

After two sessions my cancer markers were still increasing. I had to postpone my chemotherapy with one week and really believed we would have to change the type of chemotherapy immediately. Things were not looking very positive.

However, then something really good happened in that extra week! My one cancer marker came down and I had my 3rd chemotherapy of this round on 3 September, in total chemotherapy #18! At the beginning of October my cancer markers will again be tested and we will then be in a better position to decide whether the current chemotherapy is working. So there is hope again!

Unfortunately my ascites (build up of fluid in the body due to cancer) is quite bad at the moment. If the chemotherapy doesn't reduce the ascites soon it will have to be drained. Last year ascites went into my right lung and the lung collapsed as a result of it. I have pain in my rib cage at the moment, so we are monitoring it closely. The oncologist is also doing some genetic testing on the tissue of my tumours which were removed. This is necessary to determine what the treatment plan will be once my markers have gone down and if they stay down.

One of the most difficult things with cancer is the roller coaster ride with cancer markers. Also, from the moment the blood test is done until the results are available it is almost impossible to relax. Even people who have been in remission for a long time say they experience this uncertainty.

In the meantime my arthritis has worsened and the pain in my neck, jaw and head have increased significantly as a result of it.

I have tried various alternative treatment options, however, the pain is not under control.

Seronegative rheumatoid arthritis was also diagnosed based on x-rays and blood tests. I told my brother that my body was a factory fault! How can there be so much wrong with one body?

I remember days where the pain was so bad at times that I actually wanted my cancer to bring an end to the suffering. Then you have a day or two where the pain is bearable and your will to live gets the overhand and suddenly you have HOPE again and the "journey" continues.

I don't know what is going to happen, my ascites (build up of fluid in the body due to cancer) is quite bad at the moment as mentioned above, will the chemotherapy reduce it? Will my cancer markers decrease such that my life expectancy increases. Will my pain be better controlled? I don't have any of these answers.

However, I saw something the other day which really stuck with me:

"What do you do for a living?" and the answer is "My best, I do my best."

The wonderful thing about our minds is that somehow when we think back we only remember the good things. When I think about yesterday and the days before, I somehow don't remember the pain or the uncertainties. Maybe that is what gives us the will to hold on, to not give up, I don't know.

At this stage I am doing my best to:

• make lovely memories with my loved ones

• love and be loved as much as I can

• hold onto hope, yet still be realistic

• manage my chronic pain

• be a good person

• care and support for those who are ill and/or lonely especially in the ME/CFS and Long Covid communities.

I was on Carte Blanche (South African TV program) on 12 Sept where ME/CFS and Long Covid were discussed. This program was recorded early March. It was well received and I am grateful that it will make a difference in some peoples' lives.

My blog aims to make people aware of the differences between having a well known and fairly well understood disease such as cancer and having an illness still misunderstood by many such as ME/CFS and more recently Long Covid.

The video below was published on Social media along the Carte Blanche program to alert Long Covid patients to listen to their bodies, to STOP, REST, PACE. Click on the following link to view it... https://www.youtube.com/watch?v=pP2daY-U8XE

The suffering of ME/CFS patients is horrendous and it mostly happens without the world knowing. They are the forgotten ones. While cancer is also an awful illness patients experience much more empathy and support.

However, I have noticed something else recently. A lot of healthy people don't continue to support people when their illnesses become chronic, whether it is chronic pain, ME/CFS, cancer or any other serious illness. While a person is in the acute phase of being ill, others pay a lot of attention and follow the sick person's journey. I wonder why this interest and support become less or even stop when the same illness becomes chronic. When the person doesn't die or recover within a reasonable time, others tend to move on and their support becomes less or non existing. I am not blaming people, I am merely reflecting.

I wonder if it has been the case for centuries or whether it is more recent? There is a lot of focus on being positive, surround yourself with good things, surround yourself with positive people, etc. Maybe the answer lies in there...Life can be very difficult for some people and maybe others just don't want to be reminded thereof.

However, for today I am grateful to still be alive. I am also grateful for my extremely supportive husband, close family and friends. I received a message from a man who watched the Carte Blanche insert, he has Long Covid. He said he started crying when I spoke. That is what keeps me going, reaching out to others, making a difference, despite this horrible pain I have even while I am writing this post...

Love to all!

Retha