I have been trying to work backwards to get the sequencing right. I had the endoscopy on January 22nd, a Thursday. It was Tuesday 27th January that I had the ultrasound and found out what had been going on in my body. That week I had a parents evening for William and his birthday on the Saturday. Rupert and I needed to try and absorb the news before we would know what on earth to say to the children when we didn’t really know what it all meant for us. We knew we didn’t want to ruin the joy of Williams’s birthday and so agreed we would tell them on Sunday 1st February after a family walk on the Downs. Ella was on her carefully planned year off, volunteering and learning Spanish in Cusco, Peru and was due home in a few weeks before the second part of her travels – to Asia.
How do you tell children news like this? I went to talk to Lynette who helped us. Always tell the truth. But the reality is the truth is full of unknowns. The truth is that the cancer has come back, that the doctors are going treat it like they did last time and they will be working very hard to keep treating it. It would not go away but there were lots of things they could do. In a later blog you will hear more about what I believe doctors can in fact do (possibly help treat the symptoms –but not the cause and that is something that I must do).
We were not sure if we should tell the boys first or Ella and agreed that we should call Ella as we did not want her to hear anything via her brothers without talking to us. On William’s birthday we had been to the cinema and then to have a pizza (I was already, at this point, avoiding all dairy and meat – which limits your options in Pizza Express – so I had a not very delicious plate of broccoli). We called Ella on the Saturday morning (Peruvian time). She was far from home and was very tearful. She said she was coming home that evening, and tried her very best to do so but it was too late in the day in Cusco and with travel agents. We tried to encourage her to stay a little longer and say goodbye to people. I can’t believe I actually thought she might stay there. In all of this guilt has been an overriding feeling for me. Guilt that this news has / will profoundly impact the lives of my children, my parents, my siblings, my best friends and of course, Rupert. So Ella’s immediate response to come home was the first very tangible example of this. Already the course of her life, as I (and I am sure she) had imagined it, was changing. She had worked for months at Subway, making sandwiches and babysitting when she could to earn money for her travels and she had planned so carefully and with such excitement. She booked her return ticket and we had her home by Monday. She is now my constant companion and we are exploring the world of cancer and strategies to live together. Her presence has grounded the boys, she replaces my spirit in the home when I am not feeling 100% with the chemo and she is a second mother figure for Ned.
We told the boys later that day over lunch. As with the last time I had wanted them to see Rupert and I interacting in a normal way, I wanted them to see that we were coping, as how we were, as I knew from last time, was so important in setting the tone for their reactions. There were tears and hugs and more tears and questions. But no tears from Rupert or I, we were positive (as I am) and just repeated that while this time they could not get rid of it completely we would be fighting it and I would have treatment, but that things would change. They asked if I was going to die, Ned did, and I asked him to ask me if I would be run over anytime soon. To which of course the answer was, I hope not and I don’t know. They clearly needed reassurance that I wasn’t going anywhere anytime soon and we told them that if we ever thought that was the case we would tell them. The tears subsided and for the following couple of weeks there were a stream of questions, not from all of them as a group but one on one. Having Ella has helped as Tom can ask her whatever he wants and I think trusts that she will tell him how it is and I think this gives him some reassurance. In my heart I know that I have opened up a new possible future in their brains, one without me, but I know they will have time to come to terms in some way with that possibility with the security of my love and Rupert’s love around them to consider this future.
I had called William and Ned’s school to let them know the situation so that they would be ready to put in place the necessary support systems there. William is quite self-contained, he has been more demonstrative with me, kisses and hugs, which he was never so free with and he has asked me more probing questions about the cancer and the treatment, but he has not discussed it with anyone at school (at least no adults and I doubt even any of his friends). Ned however had 2 or 3 wobbly weeks, needing to leave class a few times to go and sit with matron. He has a lovely friend from his old school who has been keeping an eye on him and she would accompany him to matron and sit with him in class. One time he said he was looking out of the window, and he thought about me as a young girl and that made him cry. He is in Year 7 and instagram seems to be how they all communicate. As he constantly loses his phone he has installed it on mine – so I get to see what is going on (!). There followed a whole range of ‘Kill Cancer’ type posts from Ned and responses from his friends. One read something like ‘ I wish cancer would get ebola and die’ which attracted lots of ‘yeah die cancer die’ from his instagram ‘friends’. He did a fundraising for me. Actually it was all very secretive and I am not sure he told those donating that the money was for me, it was for cancer– but I benefited very directly. He collected a tin of coins and took Ella into town with nearly £100 worth which he spent on new pyjamas, lush soaps, candles and more for me. The boys are all very gentle with me and it is certainly much easier getting them to pick up the clothes off their bedroom floor or go and walk the dog. They have also had me around more than they have had for a while as I work from home during the chemo weeks to avoid getting trains. My neutrophils and white blood cell counts are very low. As I have had chemo before my bone marrow is struggling – so I am avoiding unnecessary germs.
We are planning a few trips. I am not quite ready to detail a bucket list, but I am quietly noting things I have always wanted to do. One of them was to go to the theatre more and since diagnosis I have seen Swan Lake, the mouse trap and Saturday Night Fever. We are also getting more organised to try and find dedicated time for Rupert and I to have some time together – booking that weekend away etc that never seems to happen when life is so busy. We are looking at organising a trip to Thailand or somewhere with good vegetarian/asian food, yoga and massage, over the Xmas holidays. This is likely to break the bank (another of the bigger questions we have to face as a family) but I will I hope be fit enough to go and I do not know how many of these opportunities we will get. Many, is the plan, but we need to plan for all scenarios. Also on my list of things to do includes to knit something, something that could actually be worn. I am very good at half-finished scarves. I cannot actually name anything, other than a scarf I made for a teddy bear, that I have ever completed since knitting classes at school, but I enjoy knitting. I have also begun to investigate the world of oncology, drug regulation and how the current system of approving new drugs is simply not fit for purpose and is far too slow to keep pace with the science. More on this later...