The Cancer Cycle and ignorance of people regarding ME/CFS - Blog #7

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Dear Readers

Thank you so much for reading my blog. Please have a look at the rest of the blog site, I have added information under the sections on the menu bar. I.e. About me, Info on my cancer and Info on M.E. and The ME CFS Foundation South Africa.

Apologies for the long post.

Section 1 - Cancer

As mentioned before, I completed 6 rounds of chemotherapy on 1 June 2020. I rang that bell with such joy.

My CT scan of 1 July 2020 was clear, except for my kidneys who were both enlarged. There was also still some ascites (cancer fluid) in my right lung and around my spleen. Hydronephrosis is the swelling of a kidney due to a build-up of urine. It happens when urine cannot drain out from the kidney to the bladder from a blockage or obstruction. Stents were inserted from my kidneys to my bladder so that the kidneys could drain. It was extremely uncomfortable and after 8 weeks they were removed. However, the urologist did mention my kidneys weren't 100% yet.

I had to go for monthly blood tests to monitor the cancer markers. Unfortunately, my cancer markers started increasing from the first round of blood tests. I now need to undergo more chemotherapy sessions to stop the growth of the cancer. I will be undergoing 6 more chemotherapy sessions starting the week of 19 October 2020. My hair will fall out again. My colon seems to have a hard time doing its work, the oncologist says it is very possible that there is some cancer on the outside of it, hence the symptoms I am experiencing. I am sure the chemotherapy is going to take care of any cancer left in my body.

I designed the diagram above and called it "The cancer cycle". Your journey with cancer doesn't end "automatically" after chemotherapy and/or radiation comes to an end. The cycle can easily start all over again.

Going for the blood tests and waiting for the results is very stressful and the shock is huge when your cancer markers start increasing again. Undergoing chemotherapy for a second (or more) time is different from the first time. You know what to expect which makes it easier and more difficult at the same time. You know what side effects to expect and you remember vividly how it was before. The fear of the unknown is again with you, of course I am positive and will keep on undergoing treatment as long as it works, but I was so sure I was entering remission/N.E.D. (no evidence of disease).

Apart from running The ME CFS Foundation South Africa (for more info see "Info on M.E. and The ME CFS Foundation SA in the menu) I am starting to learn how to design websites and social media images. It is extremely fulfilling to help fellow M.E. patients and I truly enjoy the creative side of developing websites. Hence, my disappointment as undergoing chemotherapy is going to use precious time and energy.

BUT I know I need to take the time so my body can have the best chance of fighting the cancer and I will do just that.

Section 2 - The ignorance regarding ME/CFS

As per previous posts, living with ME/CFS is very difficult. Not only are you seriously ill (physically), BUT, most people still don't understand it and somehow this group of people often volunteer "their views" of your illness publicly. Sometimes we have the energy to try and educate others about the facts of ME/CFS but mostly we just don't have the energy to make them understand (again) and get really hurt in process.

Patients with ME/CFS often hear

• But you don't look sick ("have you seen me when I can't get out of bed from being so ill with exhaustion and pain?")

• We all get tired ("ME/CFS is a neurological illness, becoming really ill from exhaustion and pain is light years away from feeling tired")

• Just push trough like we do ("this is the worst advice, patients with ME/CFS bodies have broken energy systems, they will harm themselves tremendously by just pushing through the numerous symptoms, will you try driving a car 200 kms with 1 liters fuel in it?")

A personal incident which confirmed a lack of understanding of ME/CFS

I am extremely grateful that I am physically stronger than February when my lung collapsed and I started chemotherapy shortly thereafter. My hair has grown back for the moment, hence I am looking a lot better than back then. My cancer markers were low for awhile hence I was looking more healthy than in months.

However, I still have ME/CFS. Granted: I am not severely ill with it and I am beyond grateful for that, but it still takes its toll and limits my life tremendously. I have good days where I can do quite a few things as long as I take regular rests. I also have bad days where I am completely housebound and spend a lot of time in bed during that period.

We recently had a social gathering and a comment was made that I had put my ME/CFS aside. The person further said I was never happy when I had it. He actually called it MS!

What to think of such a statement

The person who said this is a kind person and didn't mean anything nasty, it was ignorance.

However, from a patient point of view: the first thing that comes to mind is that this person clearly thinks it is in my head as there is no way you can put a physical illness aside. I also don't think I presented as this unhappy person all the time. Of course there were times which I felt horrible and wasn't a bundle of joy, but usually I would then stay at home.

I explained in a kind way that I still had M.E. and wasn't really feeling that great on that day, but I did my best to hide it. As always, I rested during our visit.

Section 3 - An added complication and the continuous need for raising awareness of ME/CFS

Personally I have an added complication. I have been suffering from severe head, jaw and neck pain almost 24/7 for quite some time. Recent X-rays showed advanced osteoarthritis in my spine from C3 to C7. We haven't done X-rays of the rest of my body yet. My left hand has lost some of its function. This is something I will have to live with for the rest of my life as it is degenerative. I often joke that my body is a factory fault, it surely keeps me busy.

However, I am more determined than ever to continue raising awareness of ME/CFS, educating the public where possible and help educating the health care profession.

There are millions of people around the world suffering from this disease. Up to 90% haven't been diagnosed yet. There is still no cure, people live in #indefinitelockdown and have been practicing #severesocialdistancing for years. If you don't have ME/CFS and you are reading my blog kindly visit www.mecfssa.org and like our Facebook page @MECFSFoundationSA.

Lastly, a huge shout out to everyone living with a chronic illness, YOU ARE NOT ALONE! #ImHopeful

Love

Retha

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