When I was diagnosed with metastatic breast cancer over six years ago now, one of the things that concerned me was that I would have less opportunity to learn and grow. However, I found that the learning has continued, but in a different light. I hope some of my thoughts might help you.
Don’t let anyone limit you but yourself – and argue strongly with yourself!
My nearest large town is an hour’s drive away and, as driving fatigues me, for a whole year I was convinced I could no longer drive there by myself. Circumstances arose where I had to make the drive, and I found I could manage quite well.
Now, about three years later, I can still drive myself in and out as long as I find a quiet, flat street to have a nap in the car before I drive home.
Recently I thought that I couldn’t swim freestyle in my local bay anymore, as my breathing is poor. On Saturday I did 30 strokes in a row.
I’ve found it really important to try something before I say I can’t do it, as I have often been wrong. Nobody puts baby in the corner but me, and I need to be argued with!
Gather around you as much support as you can – but at your invitation only
I am sure you all know how important it is to find people who support you, – be it family or friends – and it may surprise you just how many people do care and want to help. I have moved around Australia and worked in more than 25 different places, finding caring and supportive people in every workplace.
I truly believe that there are many more people than we realise who would support us, but make sure it is on your terms. One woman I met only twice gave me a five‐minute speech about how excited she was to make this journey with me and how she was so looking forward to all that she was going to learn.
Excuse me!? I didn’t invite her on my ‘journey’ in any way whatsoever and I don’t care how she thinks it will benefit her! Sometimes there can be an onus put on you to let people in so that they can learn or feel or whatever it is. My metastatic cancer is not for their benefit!
This ‘journey’ is my dance with cancer, only I know how to dance it. While I need people to dance with me, only I can take the steps. Back off!
Learn to say ‘No’, again and again and again (I’m still learning!) and don’t feel guilty
As you would know, when you don’t look unwell, people assume you can cope. I am constantly amazed by how often people expect me to do more.
No, I won’t join that committee that is known for being fraught with politics and fighting. Do you want to spend your limited days in that atmosphere?
No, you can’t come and stay then or for that long, even though that is the only time that suits you, because I will not cope!
That is a lovely invitation, but I have said ‘No’ twice already and, for the third time, ‘No’ (I find three times seems to work)!
‘No’ you can’t dump all your troubles on me, leave without giving back and remain my friend.
I do still like to hear other people’s problems (this cancer thing gets so boring), but it has to be both ways now. It upsets me that many people who know my circumstances aren’t more sensitive to my needs. Being upset is not going to stop them, so instead I say ‘No’.
Dine out on all those rude and/or insensitive comments
Anyone who knows me has heard the story of the woman who phoned from a charity. When I told her that I prefer to donate to cancer research as I have metastatic cancer, she responded with ‘Well, I hope you can learn how to be more positive.’
I was dumbstruck – literally – which allowed her to continue with ‘I hope you can find a support group that will teach you how to eat right, exercise properly and how to develop a more positive attitude.’
I hung up on her, cried my eyes out more than once, and eventually rang the charity to put in a very strong complaint.
However, I have now dined out on that story and many others for several years. The problem lies with the person who made them, not me and I love to marvel at how they somehow thought they were being helpful. It takes time, but do your best to laugh at them.
It’s not the retirement I was thinking of, nor at the anticipated age, but it is the only one I’m going to get
I have tried to look on this time as my retirement time, and do as much as I possibly can that I would have liked to do in my real retirement.
So my husband and I have travelled, I’ve joined the local choir, book club, yoga, aqua aerobics, swimming, volunteered at a local nursing home, regularly go to movies with my ‘movie mate’ and have researched my family history.
Sure, there have been limits on what I hoped to do, things I couldn’t and times when plans just didn’t work out, but I have really enjoyed all of those activities and it has taken my focus off the bloody cancer.
I have recently lost my voice, so I have had to put the choir aside and take up the ukulele! Of course, I often have to say I can’t come, but that is why I’m not on any committees. I have found distraction to be really necessary and that it helps to replace each loss with a gain of some sort. Go out there and have fun!
As my wonderful counsellor often has to remind me, you have to constantly find ways to fill up the ‘happiness’ cup in preparation for those inevitable times when you have to drink from it.
My fellow members of Cancer Council’s metastatic breast cancer telephone support group definitely help to keep me topped up.
Of course there are those incredibly dark and understandably teary times when nothing really helps. However, I hope that sharing some of my survival tips will help you and that your cup remains as full as possible.