Why did I feel sad after completing 6 rounds of chemo? Different emotions having M.E. and/or cancer.

Retha Viviers
Jun 28, 2020
3 min read

Blog # 6

#cancer #m.e. #chronicillness #indefinitelockdown #painwarrior #livinglife

The above picture was downloaded from Canva...

This blog is written by Lorraine Wiltshire and myself. Lorraine is a dear friend of mine with M.E. who has been having cancer the past 4 years. She taught me so much the past few months.

I was struggling to understand a certain emotion I experienced and had a long discussion with Lorraine about it. I experienced a sense of loss when I completed my 6 rounds of chemo. I couldn't understand it; the short term side effects were horrible, the longer term side effects are just as bad. No hair, no eye brows, almost no eye lashes, my nails broke so much it hurt. So why would I feel almost sad that it ended (for at least the moment)? Although the chemo sessions itself were pleasant and I made new friends, I definitely didn't want more chemo, I would love to be declared "no evidence of disease". I fought so hard the past few months, what was behind it?

The following transpired from our discussion.

Lorraine put in words what many of us with M.E. know so well, we experience it almost daily... herewith her journey...

"This is how I’ve summed up my journey on the above.... I’m sure you will be able to relate to some of it Retha.

M.E. (also referred to as chronic fatigue syndrome by many)

ANGER, because it took almost two years to be diagnosed and not knowing the reason, except Epstein Barr was active. I had Glandular Fever in matric.

FRUSTRATION, because of losing my independence, not knowing the cause, lack of understanding, not having a cure, except to be treated symptomatically.

HOPE.

Immediate family and friends:- Close family, lack of knowledge and understanding causing frustration, impatient to know when it would go away, but some support until later when they were able to do research. Hope for a cure....The rest of the family, I think just got tired of asking, so not much was said, except to ask sometimes “ has it not gone away yet?” Did they research M.E.?

Friends and acquaintances- lack of knowledge and understanding (How many of your friends did research on M.E.?). Frustration and impatience with you and some losing interest in you.

EMPATHY for those who are suffering even more.

GRATEFUL that there is a forum where we are allowed to ask questions and share our feelings without being judged. Thank you Retha (she is referring to our support group on Facebook)

CANCER

On diagnosis, no reaction, felt like I was in a bubble, just did what I was told do by Oncologist and surgeons after the first two ops and just went through the motions each day, until about the end of last year, I felt FEAR of death, because I realized I am not in control and have to rely on others to keep me alive.

SADNESS:- Having to put my loved ones through this. Seeing the weight loss and all the side effects and having to isolate myself from them and the grandchildren when the neutrophils are low.

ACCEPTANCE that the effect of renal cancer will always be there. There will always be more tests and scans, because as long as this last oral chemo works, I will be okay, so I HAVE HOPE.

There are are good days and better days, but I would have that any day just to be alive!

Family:- Close family, FEAR, I know they feel it. They have researched renal cancer, lobotomy of the lung and removal of kidney. They show EMPATHY, check when blood tests are being done and ask when the next scan is due. CARING! We are a lot closer and they too have HOPE.

The rest of the family are more in touch with me than before and periodically phone to check in, so EMPATHY AND CARING as do friends. Your friendship, advice and understanding is worth more words than I can express!"

and then I realised what was going on with me, why I was sad:

It was wonderful to be believed by family, friends, even strangers
it was wonderful to receive caring messages from friends and family who haven't done it before, I so appreciated it
it was wonderful not to explain why I had to rest
when my cancer markers decreased "miraculously", I heard how strong and positive I was (contrary to being perceived to be negative and not strong as per my previous blog)
I realised I was going to miss the above, I was going to miss that my PHYSICAL illness wasn't dismissed and often viewed as something in my head...
It is not a case of wanting attention, in fact it is the complete opposite: I don't want to have to justify my rests, my missing out on events, feeling awful yet looking okay, being in pain 24/7 yet not "looking it"...