I visited the new Cancer support centre near the hospital last week. It's a lovely building to spend time in, surrounded by beautiful gardens - I was supposed to go back for an art group from 10-12 on Friday, but I've only just remembered, and I had the cleaner here until 10 today anyway. I'll go next week.
At the centre, I had a good long talk to one of the staff, and I told her how I thought they needed to integrate better with the clinic at the hospital, and that I thought one way of doing that would be to make appointments for all new cancer patients receiving treatment to visit the support centre with their carers, so that the patients/carers don't have to take the initiative to go there themselves. Another appointment at the end of treatment might help with the transition from treatment to survivorship. I was relieved to discover that I'm not the only one who has found it lonely and difficult when I did some research last week.
Another topic I'm going to read up on is the reasons why people sometimes find it so hard to keep in touch with people who are ill. As the person who has been ill, I've tried to make regular phone calls to a select few people, and to return calls that I've missed from others, but I haven't been on the phone every day. Long conversations can be tiring, but I still love to listen to others' stories. At times, I think of calling someone, then can't summon the courage because it's been so long, and I get a lump in my throat and tears in my eyes at the thought of what to say to them - I don't know who is reading this blog regularly (other than Barbara, Debbie, Cressida, Izabela, Leo, Caroline, Maggie, Fran, Deb, Katie, SB, Claire, Amanda, Pip, Libby, Anne, & Liz - forgive me if I've forgotten anyone) - and I'd rather have a fresh conversation than rehash things I've covered here.
I have been guilty of avoiding contact with people who were unwell - my father (I couldn't bear to see him stuck in his body, I didn't want to cry in front of him, it upset him); my old landlady (I didn't drop in on her in her nursing home for 3 years because I didn't want to be told she'd died - it was a shock to get a call about her passing from her son-in-law, though it became bizarre when he didn't give me the funeral details); my cousin (she always seemed to have other people there, I didn't want to intrude too often). I kept visiting Dad and Marita, not as often as I felt I should, because I wanted to see them, to let them know I was thinking of them, that I loved them.
Even when going through an illness, people are still very much alive, and speaking to, or seeing, their family and friends is important for maintaining a sense of self, of connectedness, of love, and so many other things. We're dead a long time when it's over, and while I believe that our spirits never die, and are always connected to those we love, it's better to nurture and celebrate those bonds of love during life, while we can. So if you don't know what to say to someone who is suffering an illness, just ask them how they are, have a conversation with them, take them out and give them some pleasant experiences to remember, don't feel you have to be deep and meaningful. Sometimes just hearing a funny story can be therapeutic, sometimes just sitting together in silence is perfect. Don't be put out if the person is fatigued or irritable, or unable to concentrate for long. Your calling or visiting them will have made them feel remembered. Sometimes the isolation that illness brings can make you feel you're just waiting in limbo - I'm so thankful for the people who phone, email, visit or text me, often at times when I'm lacking in energy to initiate anything.
Early this year, I didn't call Pam, my workmate with lung cancer (who had never been a smoker), after sharing a room with her in hospital. We had several good conversations there, including about her knowing that she didn't have much time left (she'd been given 3 months), and although I thought of her often, and thought of calling her to see if she had moved into the house they built, I didn't get around to it - partly afraid to hear she'd passed, partly because I didn't want to intrude on her time with her husband and family. It was a shock to hear about her funeral when I visited work a couple of weeks ago. She is still very much alive in my mind, and I'm sorry I didn't call her. I can still hear her voice in my head, and still feel the warmth of wisdom and compassion that she shared so generously with others. We talked about the cruelty of fate when we spoke in January, and she seemed at peace with the inevitability of her demise, and was glad that she'd had time to talk to her husband, children and grandchildren. While I'm sad I didn't call her after I left hospital, I feel like we shared a lot in our conversations in January, and I told her how much I admired and cared for her, and how unfair it all was. She expressed similar feelings to me (we always were a mutual admiration society), encouraged me to focus on getting better, and I felt like we'd said our goodbyes, not that we wanted to. So I had a sense of closure with her, and I'm glad I got to see her this year.
Wednesday March 26th
I've been feeling very angry the last few days, angry about the unfairness of people getting sick, about young people getting sick, about old people getting ill, about the difficulties involved in caring for elderly people, about this disruption to my life, where I wanted to be fantastic mother to my kids and
to make a difference to people with brain disorders and their families in my career. I hope I'll be able to do these things, despite the changed trajectory of my life. I'm angry that I now have the fact of my mortality clearly marked in my brain, that I've seen the images, that I can't pretend that it won't happen to me one day. Even though I have an "incurable" illness, the termination date isn't set - I'm glad about that, but angry as well. There's still so much I want to do, and I'm angry that I now have doubts as to whether or not I'll do them. I used to think I'd get around to them some day. Now I feel like I need to hurry up and get on with it, while simultaneously taking time to recover and rehabilitate myself.
I'm also feeling angry about many of the campaigns to raise awareness of cancer, or to raise funds for cancer research. The colour pink makes me want to vomit. I have no problem with people wanting to show their support for people with cancer or other diseases, but as someone who has put up with it for 14 months now, seeing pink doesn't make me feel better. I had friends who marched around the 'Tan in Melbourne last year, and I love them dearly for all that they've done for me, but I don't need them to do this to know how much they care for me. I'd rather they go and have dinner and see a show and tell me about it. Sure, if you want to, donate money to cancer research, especially rare cancers, but if you want to really help people with cancer or any other chronic illness or disability, go and spend some time with them, take them out, let them know you care about them. Don't leave them in their homes while you go out with your healthy friends and enjoy the solidarity of marching for them, of making a giant pink lady on the MCG.
I'm increasingly annoyed by Facebook campaigns "to raise awareness about cancer," by asking people to post cryptic message, or more recently, selfies of themselves sans makeup. It does no such thing. Posting information about cancer symptoms and detection is more helpful. Posting selfies just shows how good most people look without makeup (probably carcinogenic), and gives people an excuse to post a selfie without being vilified for doing so (thought I love the post of Robin Williams as Mrs Doubtfire, and then without makeup). I'm fortunately not acquainted with any narcissistic prolific selfie-posters on Facebook, so I'm not disturbed by the phenomenon. I have taken a number of (unpublished) selfies in the past year because there was nobody around to ask to take my photo. The selfie, for me, is to prove I still exist, and to track how I looked. I don't even look in the mirror much any more, I don't want to see the remnants of the steroid-induced hairy moon face, and there's no hair to style. I can feel that my hair is growing back on my scalp, which is good and bad. Good, because it will be warmer in winter; bad because I will have to work out which ultra-short hairstyles will suit me. I want it to look deliberate, not accidental.
A couple of you have asked why I wrote that I feel cowardly when blogging. I didn't explain it well at the time. The cowardice is sometimes in using the blog to update people with bad news. In the old days, we used to get on the phone to tell people these things. So in not picking up the phone and making a call I feel like I'm being a chicken - I don't want to cry on the phone to you, or to upset you with my news, and writing is one way I can get my feelings down and make sense of the developments without taking up someone else's time, or to have to help them deal with the news. It's also not practical for me to call everyone individually, and the blog ensures that you're hearing it from me, not second or third-hand. Sometimes it feels cowardly because sharing news of setbacks in this forum feels a little like throwing firecrackers or a hand grenade into a gathering that I'm hosting. I don't know how it's going to affect people, other than it's likely to startle or upset some of them. I'm worried that people will be upset, and I wish I could throw streamers and party balloons instead. I know you're all here by choice, and that it's naive to imagine that every event is going to be one of good cheer, but as the author, I do feel responsible for the tone of this narrative, and I would like it to start heading to the blue skies and sunlight of healing and resolution (think Julie Andrews singing Sound of Music on top of that hill), instead of continuing to trudge through the plains of character and plot development (think Mordor, or Harry, Hermoine & Ron taking that damned Horcrux on a dreary tour of the UK).
I'd like to have my battle with Voldemort, and get it over with (I'm going to win, of course, I have love on my side). I'd like to stand at Helm's Deep and fight. Instead, my battle is waged inside my body, at a cellular level, where mutant cells need to be identified and destroyed by my immune system, with the help of medications and supplements and diet - but it's hard to know how well my defence is working, apart from how I'm feeling and my symptoms. The next MRI won't be until May, if we stick to the 3 monthly review schedule, and if I don't develop any more symptoms. It's a little like having termites in your house, having them treated, but not being sure if they've been eradicated, or if they'll return or not.
I was beginning to think that the anger was a sign of losing control, I've only felt it occasionally over the last year. Then I realised it was a sign of my energy returning - the energy to be able to fully vent my spleen at last, after 12 months of not having the energy to engage in that level of emotion - I chose not to engage with my anger because I needed to conserve my energy, and I felt it was futile to get angry, I couldn't see how it would help me. This week, I've found that my anger it is an energising and motivating force, and that it might result in good, if I channel it well.
I posted two selfies on Facebook earlier this week, along with this comment:
Selfie with radiotherapy mask and steroid induced moon face. no make up. Taken on a good day. Second photo taken whilst in hospital with febrile neutropenia for probably the 7th time after having two primary cancers treated with chemo and radiotherapy in less than 12 months.
Cancer sucks. It takes away your energy, disrupts your life, affects your ability to live as you normally would. Rather than trying to raise awareness of cancer through posting selfies on Facebook, I wish people would go and visit someone with cancer or a chronic illness, or volunteer to do so. People with cancer need to feel that they're still connected to others. We all do. So go visit someone you know who is unwell, have a good time, and put a selfie of that on Facebook.
I love this quote from the Dalai Lama:
"We have learned that the key to happiness is inner peace. The greatest obstacles to inner peace are disturbing emotions such as anger, attachment, fear and suspicion, while love and compassion and a sense of universal responsibility are the sources of peace and happiness."
So I might just cultivate peace and happiness by observing my anger, attachment and fear, and converting them to love and compassion.
Cancer sucks. It takes away your energy, disrupts your life, affects your ability to live as you normally would. Rather than trying to raise awareness of cancer through posting selfies on Facebook, I wish people would go and visit someone with cancer or a chronic illness, or volunteer to do so. People with cancer need to feel that they're still connected to others. We all do. So go visit someone you know who is unwell, have a good time, and put a selfie of that on Facebook.
I love this quote from the Dalai Lama:
"We have learned that the key to happiness is inner peace. The greatest obstacles to inner peace are disturbing emotions such as anger, attachment, fear and suspicion, while love and compassion and a sense of universal responsibility are the sources of peace and happiness."
So I might just cultivate peace and happiness by observing my anger, attachment and fear, and converting them to love and compassion.
