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EARLY DAYS
I think it important to say that in this book I am not going to use the words “victim”, “survivor” or “fighting a battle” – these are very negative words. I am not a victim and I am not fighting. In fact, I am not “surviving”, I am “thriving”. I have cancer and I am living with it. I accept it and will do my best to deal with it. I know that by not being fearful and angry I can help control my cancer. Anger is an uncontrolled, dangerous and unhealthy energy. I decided early on to get rid of all negativity, to use my energy to be positive and help the healing process. It sounds very clichéd but happiness depends on thoughts – keep your thoughts positive and happy, and you will be positive and happy.
A note on the internet
I have mentioned this very early on because the natural reaction of anybody who has been diagnosed with cancer is to go straight on to the internet. The internet is full of total rubbish most of the time and few sites can be trusted. The only websites you should look at are proper established websites such as those of specific, well known and reputable cancer charities and medical organisations.
One thing to look out for is reported speech. A journalist can basically quote anything if he uses “reported speech” - and sometimes this is really not helpful and can cause a lot of very unnecessary angst, as the conclusions people draw can be wholly inaccurate. Believe me, I have experienced this.Telling people
Parents
We decided not to tell my parents on the night I found out that I had cancer. I knew they would be devastated and I was still in shock. I didn’t want them to have a sleepless night. I would wait until the morning, when I could be calm and collected, and when they could have the day to digest it all.
When I woke up rather early, having found it terribly difficult to get to sleep, Carletto was hugging me quite hard and I realised how lucky I was to have such a marvelous husband to support me. It made me laugh because he offered to make me a cup of tea. This was quite a significant step – he has only done this once before in our thirteen years of marriage, and it was undrinkable then. He is half Italian – coffee is his thing. He doesn’t “do” or get tea. I declined the offer, knowing that it would be frightful and told him that I would give him a tea lesson in the next few days so that he would be able to bring me endless cuppas over the coming months.
I was dreading the phone calls I had to make to my parents. I so wanted to be clear and calm and concise. I sat at my desk and practised over and over again what I would say: “Hello Mum/Dad – I have breast cancer”; “Hello Mum/Dad, how are you? I need to tell you something important, I have breast cancer”; “Hello Mum/Dad – are you sitting down…?” and so it went on. I thought if I spoke calmly and with a flattish voice then I would stay in control. It was the word “cancer” that threw me. I just couldn’t say it without cracking up.
Here goes – deep breath. I ring them both. I can’t say the word “cancer”. I can’t breathe and I finally cough it out. Mum cries, so I cry. I feel and hear the deep pain and anguish in her voice. I try to cheer her up and joke that one of us has to get it and that it’s better I get it out of her four children as I have the better support system. I will be using the word “support system” a lot, I think, as even now, at this early stage, I realise how important this is.
When I ring my father, my stepmother answers. “Have you got a cold”, she says,” your voice sounds funny.” I don’t know what to say, I am trying to keep it together. I tell her I do have a little cold and could she pass me on to Dad. I am trying to sound nonchalant because if I don’t, I will crack. Dad comes to the phone – “Hello darling, do you have a cold? Julie’s right - you sound rather stuffed up and muffled.” They don’t know that this is my serious voice, my voice that is trying to stop me from crying. I tell him I am fine and that I have some important and serious news. Again, I cough it out. The phone is on speaker at their end. They always have their conversations on speaker as they both like to be in on the conversation together. It’s very sweet. Dad went silent and Julie did the talking. I knew that Dad was trying to take it in. I felt so dreadful for them both. After a few minutes he managed to come back to the phone and I tried to explain to him the situation as it currently stood.
Telling my parents was perhaps the hardest thing I have ever had to do. There is something terrible about thinking that your child may die before you. There is no perfect way to tell people. You just have to do it when you think it is right and in a way that you think is right.
Children
With my children it was also extremely hard. The news had to remain a secret at first because my eldest, Columbus, was doing his mock Common Entrance exams two weeks later. The exams were seriously important and would determine which school he went on to. So he mustn’t know.
We decided to tell them in three weeks’ time. After the exam. I didn’t think I would tell them the whole story but I suspected that Columbus would become a cancer expert within days – just like his father.
Actually, I knew that they were less informed about cancer than my peers, so it was very important to me that when I told them, in the same breath, I assured them that Mummy was going to be okay. I shall never forget their little faces when I told them, and the way that all three reacted - each differently, I might add. The most gutting thing was when Archie, then nine, put his hand up as if in a classroom and with a very sensible and reasonable voice said, “Are you going to die?” He asked the question that the other two were burning to ask too. My stomach lurched and I told him that I was not going to die. I told them Mummy would have to get very sick in order to get better; that the treatments were very effective but they were horrible. I told them I would lose my hair. Once they realised that it was okay to lose my hair, that I might look quite groovy in a wig and, later, when they saw other people’s positive reactions to my appearance, they began to feel a bit better.
Others
The only non family person I told straight way was a good friend of mine who lived nearby, who had come through a very aggressive cancer recently. The week we waited for the biopsy results was to be my research and decision week. I wanted to find out as much from her as I possibly could. Carletto and I still had ’t decided where to carry out my treatment, and we knew we had only a few days to make the decision. Again, I choked out the “cancer” word to Diana. I really looked forward to saying, “I have cancer,” without choking or crying. I was hoping it would come soon. Actually, it took several weeks before I could say it without having to really control my emotions.
School and other parents
I told each of my children’s schools quite quickly. I thought it important that all the relevant teachers knew so that they could give the support to my children if needed. I made an appointment to see the heads and the form teachers. I am so glad I did this, at it meant it was out in the open, that it was acknowledged, that people would feel comfortable about asking how I was. I was trying to minimise that discomfort that people who don’t know you very well feel when they are not sure whether they should mention something or not. Acknowledgement is very, very important - I have a whole section on this later on in the book.
The same went for the parents of my children’s contemporaries. They all found out pretty quickly and it still gives me goosebumps when I think about how they rallied round helped, loved, and supported.
One memory of this time sticks out. It was Angelica’s school fireworks night, a couple of days after diagnosis. I didn’t want to go but I had to – I didn’t want her to know anything was up. Carletto couldn’t face it and anyway he had too much to do. He holed himself up in his office. He wanted to get my reports and data to my family GP in London so that they could be looked at over the weekend to help in the decision making process.
On the evening in question I met darling Angelica at school at 6.15pm – she was so excited and ran off with her friends to the massive bonfire. I had a mulled wine and met up with my friend. I was so glad I had told her as she had so much information to give me. We hid in the damp bushes all evening with fireworks going over our heads, drinking weak mulled wine while we talked about it all – the options, the side effects, the children. I learnt a lot that night. It was rather a surreal situation watching those fireworks go off, watching excited children and parents flying by and hiding in a bush talking about cancer.
My friend and her husband came over soon after so that they could fill us in with as much information as they could, from drawing on their own experience.. I also wanted Carletto to chat with my friend’s husband. I was very conscious that there would be no-one looking out for Carletto and I thought it would be good for him to talk to another husband who had been through it in the sense of the spousal support.
How do you tell people you don’t know well - or do you?
Again, there is no easy way to do this. In most cases it is not necessary to tell them, but sometimes you have to. Maybe because you start to feel faint and need to sit down whilst out shopping, or maybe you can’t lift something. It is normally for practical reasons and for when you may need a stranger to help you with something. I found it much better to let them know I had cancer and was in the middle of chemo or whatever it was at the time, as then they would be much more receptive to helping me`. Otherwise you may get funny attitudes and looks, which can be very upsetting at the time. Whilst I am on this subject you must be prepared for how people are going to react to you. I cover this in my next chapter.
Looking after your partner
I was very adamant that my husband had a free rein. I didn’t want him using up all his energies hovering over me. It was bad enough for him as it was. I wanted him to go out and have fun, release his stress. During my intense treatment, he went away a couple of times with the children on pre-planned holidays with friends, and I am really glad they did. I think it is really important that they are not sucked into the “cancer” environment 100% of the time.
From my diary: ‘I have been doing something very laborious – writing my envelopes for our Christmas Card. I really want to send one this year as we didn’t for the last three years because I was so stressed out and busy with Lovedean (my granola business). I am in the middle of making the card. At least if I get rushed in to hospital then the rest of the family just has to write them and stuff the envelopes. That’s my intention anyway. I am on the letter H at the moment and have about 250 more to go."
This is a serialization of my book, Cancer Is My Teacher.
