Tag Archives: Care Givers

Care-Giving Support

In 2005 I became the medical advocate and care-giver for an ex of mine, who had advanced colon cancer and ultimately died in December 2010. As her illness progressed I felt more and more at a loss in knowing what to do and how to help her. I was not, at that time, told of any support available from the BC Cancer Agency, or any other groups, for care-givers. Neither was there much support for the the patient herself, outside of medical support.

It would have been so helpful to have had someone knowledgeable to talk to about what the process would likely look like, what we should worry about and what we should just be conscious of and accept. Why wasn’t she eating? Should we be pushing her to exercise even though she was feeling less and less well? How long might the dying process take?

Apart from Alex’s emotional support at home I felt quite alone. As I found when I was going through my own OC journey, some friends hung in there and called, but many appeared to abandon us. No-one visited my ex except her condo neighbour. I wish that I had known then about the services that the BC Cancer Agency now provides for care-givers. I now know that I would have benefited from talking with their counselors.

I think the system has changed a little in the last few years. Without exception, everyone involved in the process is lovely, compassionate and good at the specific job they do. But more could be done to make both patients and care-givers aware of the support available.

The lesson here is three-fold:

  • Physicians within the Agency and at the family practice level should make pamphlets available outlining what support is available, and how that might provide assistance.
  • Care-givers and patients should ask for the help they need – it likely is available!
  • Support should continue to be offered through the journey. People forget, or are too busy to realise they need help, or maybe didn’t need help the first time round but could use some now

There is an interesting article from Ovarian Cancer Canada about the support care-givers need and how they can try to cope.

Where Are My Friends?

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.