Well-being tip #7: what chemo girls wished they had known before their treatment

Cancer always gets us by surprise. It doesn’t matter how old you are, if you are happy or not, rich or poor. Cancer doesn’t discriminate. Like me, I am sure all cancer patients have hundreds of questions upon diagnosis. Questions not only about surviving, but also short- and long-term effects of the cancer and treatment. Some questions are more obvious than others. For example, when I was told I had ovarian cancer, my immediate questions were: “do I need to remove both ovaries?”, “do I need chemo?”, and “am I going to lose my hair?” – to which my doctor said “yes” to all. The longer you have to think about it, the more questions you have. Some silly, like if you are going to lose your nails with chemo, or deeper questions, like never being able to get pregnant. But you never cover everything, because there are so many things that are unexpected!

So my idea today was to put a list of things that, as patients, we wished someone had told us. In my case, something I did not expect was feeling as exhausted as I did. The chemo nurse told me that during my first chemo, but I never thought it would happen to me. I always had so much energy! I had plans to go back to the gym during chemo, but this never happened. There were days that being alive was hard enough...

As patients, we endure the worst side effects of cancer treatment. But they also affect everybody around us, from our family to our close friends. My fiancé, Ian, told me he never expected he would become so emotionally dependent on me.

Because everybody is different, I asked for help at the “Ovarian cancer together” Facebook page, where we have an incredible group of brave chemo girls. They kindly shared with me part of their own battles and hopes, which are listed below (to keep their privacy their names have been omitted).

Chemo brain: we forget everything

“I wish I had known about chemo brain/fog.”

Peripheral neuropathy and potential long-term nerve damage

“I wish I had known how severe foot neuropathy would be. I didn’t even know what neuropathy was before this.”

“I wish I'd know about my feet becoming numb.”

Fatigue makes you feel so tired you can’t get out of the house… or even out of bed!

“I wish I had known that the fatigue I feel is so tied to my level of frustration of wanting to do things and unable to do them.”

Bone pain after chemo can be debilitating…

“I wish I had known about the pain during treatments, that one hit me like a ton of bricks. I had no idea about the bone pain.”

“I wish I'd know about the pain wow the pain was intense.”

But there is some medication to help with bone pain

“I wish I had known about Claritin: if you take Claritin 24 hours after getting the Neulasta shot (a drug to increase your white blood cells, to decrease risk of infection) it makes the bone pain bearable. I did not know about this miracle during my first bout with cancer.” *Please check with your doctor if this is an option for you*

Hair loss. Everywhere.

“I wish I had known I would lose my nose hairs and I wouldn't feel it when my nose ran.”

“I wish I had known to use a silk pillow case while losing my hair, it makes the scalp not hurt while losing hair.”

“I wish I had known how cold your scalp gets without hair!”

Food didn’t taste as good. Or didn’t taste at all.

“I wish I had known how much I appreciate the taste of food before chemo, but thank God it all comes back after all is done.”

“I had carbo/ taxol and after about a month after the last chemo I started tasting things a little better. Every once in a while, water has that funny taste but for me mostly everything is good.”

Appetite and taste changes

“I lost taste for red meat, milk, bacon and sausage, and it never came back. I am going through a recurrence and foods taste off again. How I long for my appetite to return!”

“I couldn't eat strawberries and drink sweet tea.”

Most chemo girls put on weight

“I wish I had known I would that most patients put on weight, instead of losing weight.”

Constipation

“I always had the impression that chemo would result in diarrhoea. I wish I had known how constipated chemo would make me!”

Take your meds as prescribed by your doctors

“I wish I had known that if you are a diabetic NEVER put off your morning insulin because you are ravenous upon waking up so you eat. The third day after chemo this happens and I end up throwing up and not being able to keep anything down until mid-afternoon.”

*Remember to discuss any symptoms with your oncologist and chemo nurses, most of the time they can do something to help you. Also different drugs have different side effects, and not everybody has all side effects of a given drug.I have also written blogs with survival tips on most of these issues too, please check our past blogs.*

Finally, what I wished somebody had told me was how much cancer and chemo were going to change my life, for the best. Of course I still worry if the cancer will come back and I see in the mirror everyday the devastating effects it had on my “old” self. But I have also seen first hand how good people are, and that restored my faith in humanity. I have learnt to appreciate little things, like going for a walk, a bit of sunshine and the time I spend with my family and friends. And I hope you can learn that too.

Lots of love and health xx

Fran