It’s a funny old world, isn’t it?
Ovarian cancer carries with it the foreboding sense that the person is very ill and not long for this world. People don’t know what to say or how to act. In truth it is only recently that the treatments have improved to the point where ovarian cancer is not necessarily an imminent death sentence.
Here is a quote from a discussion about cancer generally in The Guardian last year.
The worst experience I had when I was going through treatment was friends and family staying away from me because they didn’t know what to say or didn’t want to say the wrong thing.
The loneliness I felt was actually worse than the illness. – Lushattic 18 April 2012 on The Guardian site
I found various responses to my diagnosis:
- Some people (men in my case) knew nothing about ovarian cancer and the enormity of it had to be explained. This was at a point in the process when I did not yet know the extent of the disease so I myself was quite concerned.
- Some people knew about it and I could tell they thought I would be dead in two years and became quite upset about things.
- Some people calmly asked questions, said they would read up on it, and stayed by my side throughout.
From my first operation to the end of my chemo was seven months.
I have more friends in the UK than in Vancouver, so they could only email me. But they did fun things like send me pictures of my home town, or silly pictures of themselves to make me laugh. The time difference was such that I could wake up to their emails every morning, which was wonderful!
When I was at the hospital, after my Emergency visit and waiting for results of the initial tests, I didn’t want to worry Alex. So I used my iPad to Skype my oldest friend Jane, in Sheffield, and she talked with me for an hour until I realized it was 1:00 am for her and sent her to bed! The internet is wonderful 🙂
Most of my friends (far and wide) signed up for my blog, and many wrote comments and communicated through the blog. A couple of people called during my treatments. One couple asked us over for a meal. One couple sent flowers part-way through treatment. One friend called every day for a little chat about anything and everything (lovely). One friend took me for walks after my operations and during my treatments (again, lovely). One friend sent me a postcard every week, telling of her comings and goings and commenting on the sun (or lack thereof).
In my blog I said that while I really enjoyed the emails it would be even nicer to talk to people or see them (the locals). But that didn’t happen. When the odd person actually called I would be told “You’re going through such a lot right now and I’m sure you feel awful. You don’t want to be bothered with coming out right now! You’ve got so much on.”
The thing is, you can’t ask for invitations out. I didn’t particularly want to be going to restaurants because I was tired and didn’t fancy restaurant food. We both just wanted some company, and someone else to cook a meal and tell us about their lives out in the real world.
My two key friends, Kate and Helen, were different. They each listened when I wanted to talk, asked about how I was feeling at the time and how the side-effects were going, and then told me about their lives and what they were up to. That was great!
My partner and I are two Type-A, self-directed, get-it-done people who don’t need help in the normal way. We did handle everything ourselves just fine. But it was a lonely process. Only one person paid any attention to Alex although she was extremely stressed and worried about me and had only this one person to talk to about that. We looked after each other, but there were times when I was just a bit too out of it to do any good or by any help.
It is difficult to explain to people how the treatments are affecting you. I was so lucky in having no children to look after, I could afford to stop work (had to stop anyway) and my partner looked after everything at home as well as taking me to chemo and attending all the physician meetings – all while continuing to run her own busy business. For people with more unrelenting responsibilities – they need practical help! Shopping, doing the laundry, even emptying the dishwasher!
I like this comment, from the same discussion at The Guardian.
When I was told by a friend that he had cancer my immediate response was: “Sh*t, that’s a real b*gg*r, isn’t it?” I see that is not listed as unacceptable, so shall use it again if the unfortunate occasion arises again. – dilliethedog 18 April 2012 on The Guardian site
So my advice to “friends” is this:
- Treat the person as you would normally.
- Listen to what they have to say.
- Ask questions to the extent the patient is able to deal with them.
- Offer to take them for a walk or drive to somewhere fun (Granville Island?).
- Offer to have them over for a meal, but explain that if the patient feels really unwell they can cancel at the last minute.
- Only one person should call every day, or friends should set up a rotating schedule to call the patient. It gets to be too much if there are too many (a variable number) people to be talked to.
- Hang in there for the long haul. There is usually lots of attention up front but few people understand that as the treatments get going, you actually need more help and support.
- Remember to support the care-giver as well. [I will post more about that another time.]
Here is an excellent article about what to say and do when someone is diagnosed with cancer.