Pinktober Guest Post: Aliza Bat-Ami

Pink-to-ber A portmanteau coinage used by many people who live with breast cancer to refer to October, the Breast Cancer Awareness Month, which is heavily dominated by marketing in the color pink and cute tags like “Save the tatas”. (See Komen, etc.)

During the month of October 2013, I am running guest posts from people with metastatic breast cancer (MBC) or who are closely involved with someone who has MBC. This was the idea of the wonderful Jody Schoger, and I think some other breast cancer bloggers are participating, too.

Today’s post is by my very dear friend Aliza Bat-Ami. This is her third guest post on the blog. You may remember in particular her account of going to the hospital to be with me for my mastectomy, almost ten years ago. Aliza had another close friend with metastatic breast cancer. Aliza is brutally honest about her experience as a fearless friend, or as she prefers to say, “a friend-alongside”. Please give her lots of comment love: she, and all our friends-alongside, deserve medals!

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Like most people the number of people that I know more or less closely who have cancer – mostly breast cancer – is ever increasing. If one has no familial responsibility to the patient, then the natural reaction is to be sympathetic from afar, in fact from as far as possible.  Every time I heard of another diagnosis I have a strong feeling of “there but for the grace of God, go I” – and feel guilt at my relief at each clear mammography.

However things changed when a dear friend, Nina, was diagnosed with metastatic breast cancer.

Nina came from a culture totally different from my proactive Western individualism. She was raised to value stoicism and conformity and not to question authority. She was  thus the most compliant patient any doctor could wish for.  Far from being proactive and seeking out the “best” treatments, she determined right at the start to trust God and her doctors. What they said, she did.

At first I just took an interest in her progress not exactly from afar, but not at any cost to myself.   The moment that I was suddenly irrevocably involved was the day when I discovered that her husband, from the same stoic background as herself, was driving her to oncology clinic, leaving her there alone and picking her up four hours late. Neither Nina nor her husband thought this odd but when I heard this I was struck to the heart. (In our language we say that “my heart was pinched” – very descriptive and accurate.)  I couldn’t help it – I was now involved. I didn’t know what I was getting into, just that I had to do what I could.  I started to accompany her to all her treatments, arranging my work so I could do so.

For three and a half years a large part of my life was being with her and her family. It wasn’t only chemo and radiotherapy. We also managed (albeit increasingly small) celebrations of life – driving out to see spring flowers, watching sun-sets, walking by the sea.

Time went by and we observed the decline and disappearance of many of Nina’s fellow patients.  Her reserves of patience and strength waned. Both of us were getting very tired and depressed as the bad days began to outnumber the better days. Only the impossibility of retreating at this stage kept me going – Nina had no choice.

Then came the beginning of the end. I was present at the first visit of the home hospice team when the social worker asked Nina what she felt about the fact that there was no more treatment. Nina replied “Joy”. That reply certainly stopped the conversation!    I was thunderstruck as I finally realized that the end of our journey together was imminent and felt a terrible guilty relief at the thought.

The last three months were in fact mostly as pleasant as could be hoped for – Nina was pain free, if increasingly sleepy. She was never alone and eventually died in her own bed with her family around her. I held her hand as the pulse ceased, and I was glad that she was finally without pain.

At her funeral I thought again – it is over, now I can rest. I missed her and grieved but I had several sources of comfort. Nina had shown me so much about how to live and we had the hope and real comfort of our faith in God. A totally unexpected and unanticipated gift was becoming “in-loco-grandparentis” for some of her grandchildren (especially sweet as I have none of my own.)

Now again I have another good friend with advanced metastatic cancer. My first thought when I heard the news of her cancer was selfishly “not again! I can’t take it”, but then my heart was “pinched” again and there is no turning back. This journey is quite different, with vast differences in character and circumstances, and there are always new lessons to be learnt, as I wrote in a previous posting.

Being a “friend-alongside” of a person with cancer is most definitely not something I chose for myself, but looking back I know that I received so much more than I gave in this journey.

What should I say?

Speech BubbleYesterday I posted the video “Dumb Stuff People Say to People With Metastatic Breast Cancer” from I Hate Breast Cancer on the Telling Knots, the 30% Facebook page. An interesting conversation followed. Saoul from Italy wrote:

“…not everybody is able to convey love through their actions or words. I, for example, am not. It’s not that I don’t care. It’s just that I’m not good with words. I am a little better with actions, but still, not the best “love-conveyer” ever. When my friend Laura was diagnosed with metastatic cancer, I just asked her what she wanted me to do. We had the kind of relationship where I was always making fun of her and she of me. She asked me to go on being the usual jerk I always was because she needed to laugh more than ever. She and I had been friends for ages, so asking her was only natural. The point is… What when someone you’re not that familiar with tells you? What if a colleague tells you? What if a new friend tells you? That’s where I’m lost for words. What can I do?”

That’s a great question, Saoul. Thank you for being brave enough to ask it (and for giving me permission to quote it here). I’ll try to respond in a general way.

I guess my first thought is that you and Laura are a great example. If you already have a relationship with someone who then becomes ill with metastatic cancer, then just keep being their friend. I still tease my friends and they still tease me. I haven’t become some sort of porcelain doll.

Some people fall away when we become sick. They become afraid or challenged or deeply worried  or even very, very embarrassed and lost for words, so they just stop coming around. Please try not to do that. It’s okay to say, “I don’t know what to say”. It’s more than okay just to sit with a person and “be present” to them. (If “being present” sounds strange and mystical, you might want to look at this blog post from Katie O’Connor at the Sane Girl’s Guide.)

Ask questions. The first one should be “Is it okay for me to ask you some questions about this?” Not everyone feels like answering questions all the time. Especially if your friend is newly diagnosed, he or she may still be coming to terms with all the information. In this case, Google can be your friend, but google wisely. Go to medical sites or national/local cancer association sites as a first stop.

Take your cue from your friend. If they seem willing to talk about their disease, their treatment, their life, their death… go ahead. But take care of yourself, too. If you start to feel overwhelmed, go ahead and tell them, “That’s too much for me right now. I know that you are the one with the disease, but I don’t want to lose you and I am terribly sad. Can we talk more about this another time?”

I guess the golden thread through all of this is Be yourself and be honest.

If the person who is ill is a work colleague or more casual acquaintance, a simple “I was terribly sorry to hear about your illness” is thoughtful and kind and no more is required. If they are interested in more, they’ll let you know.

The person with metastatic cancer does not have any more social rights than anyone else. We do not have the right to make you feel uncomfortable intentionally.  We do not have the right to make undue demands on your time, energy or emotions. Emergency service providers (police, ambulance, fire) and first aiders are taught to take care of themselves first (helmet, gas mask, safe environment, whatever is called for) so they can be free to help the victims. The rescuer can’t help you if she is trapped under a falling building. If you want to be a good friend to us, please take care of yourself first.

As the person who is living with metastatic disease, I’m a bit at a disadvantage in discussing this. I’d love to hear from some of our “fearless friends”, relatives and care givers on this question.

Thanks again, Saoul, for asking.

“Who knows how to drive in the snow in Jerusalem?” – Another’s view of February 14 2004

My very dear friend Aliza wrote this response to my Valentine’s Day 2012 post. Not only a dear friend, she’s a great writer and I am delighted that she gave me permission to publish it here. Aliza, I love you.

My friend was about to undergo a major operation and I had promised to take her to the hospital.  I was very concerned for her, for the distress that I knew she was undergoing and the terror of the unknown.  Selfishly I thought that I really didn’t want to lose her – good friends are very rare! It was a concern that enveloped me and sat on me like a heavy cloak. I wanted to do something, anything to relieve the situation, hence the offer of transport.

The only trouble was that when the time came there was a very heavy snowfall in Jerusalem and traffic up the mountain was slow and very difficult in the city itself. Now in my former life in the UK I would not have worried, but I had already been in Israel for many years (which in themselves took their toll of my driving skills) and now I would think twice about taking the car out in rain, never mind a snow-storm the likes of which we had not experienced for many years. Also I lived at some distance from the capital, so what would normally have been a two hour journey took me close to four.

I persevered and yet in the end, of course, I could not get to her at all and she had to take a taxi to the hospital.  She went through her Via Dolorosa (or Valley of the Shadow of Death – you’d better ask her which) with the Lord by her side, and a good mutual friend, Jeannie, a critical-care nurse, for practical help.

I ended up spending the next three days in a hotel. I vividly remember sitting in my room in total isolation watching the heavy snow fall.   I knew that during this time she had undergone the operation and was in recovery as Jeannie kept me informed.

Then I was finally able to get to visit her in the recovery unit. I was no help at all – I was paralyzed by the sight of her in the hospital bed with so many tubes and equipment, and also by her pain. I tried to be with her and do something to relieve the situation, but despite being nominally a nurse I was worse than useless. Our wise mutual friend, a REAL nurse, saw the situation and sent me home.

I contributed not one iota to the help and relief of my friend in this ordeal.  I had undertaken a long, arduous journey to do something for her without being in the least bit effective.

My only comfort is that although I did not contribute to her relief, at least – or so I hope and believe – I did not add to her distress.  She was unaware of my journey and most probably had no memory of my helpless visit to her in the recovery unit. She had enough going on without giving any thought to anything outside herself and it would be outrageous in those circumstances that she should be concerned with comforting those who tried so ineffectually to comfort her.
In retrospect I suppose, it was as much, if not more, for me as for her. It was an act of stupid bravery or brave stupidity, I don’t know which, to have gone up to Jerusalem in those circumstances.

I did learn some things, for example, that in some things a will doesn’t necessarily mean that there is a way and that desperate impulsiveness will not lead to effective action. Perhaps the most important lesson for me was to realize the heavy wonder of the gift of God in that we ARE all separate and unique. We are called upon to “bear one another’s burdens” but at the same time we have all an individual path to walk and an autonomy that God respects, and so must we.  In the end we have to give up our own efforts and realize that comfort and relief are found only in God.