My last entry was a difficult one. I had a significant wobble which I now like to think was a necessary and useful step along the way as it made me focus. After the worst of it, when my liver was swollen (“as you can see this is a much sicker looking liver than we had before” oncologist looking at scan results) I changed my treatment to the oral chemotherapy (Xeloda) and I continue my visits to Germany. After 9 weeks of this and on Xeloda (I do two weeks on one week off) I had a subsequent scan. So much hung on that scan. I am more aware that time may not be on my side and with summer here I have packed it full of places I want to go, people I want to see and things I want to do as a family. It is amazing how short a summer is. But all of this relies on me being well and so uncertainty overshadowed it all. It is funny how your horizons can so rapidly change. The end of the summer was my target. If the outcome of the scan had not been good I would be in a very different place today.
I had only a short wait between the scan and the results. Waiting for the results you are in a state of limbo. Either they would be good (in which case my plans for the short term could all go ahead), or they would be bad (in which case, depending on how bad, I would have to action one of the possible treatment plans I have investigated and I would lose my window I so hoped for over the summer). The waiting room is the worst. You stare at people as they come in an out of the oncologists office, carrying papers and reports. Might one of those reports contain your results? Has he seen them yet? What can I read from the face of the breast care nurse? As it was, she sneaked me a thumbs up. Which I suppose tells me in the future that if there is no thumbs up the results will not be so favourable. She did so only seconds before I went in. My oncologist immediately handed me the brief report of my scan which started with ‘excellent response in the liver’. This is the first excellent, or even vaguely good report I have had from a scan. To date I have had 5 scans since my diagnosis last January and they have gone from baseline, no change, no change, (despite chemotherapy), some progression and then a ‘much sicker looking liver’. So to get an ‘excellent response’ was pretty impressive and much better an outcome than any of the scenarios I hd prepared for. I looked at the scan (which I hate doing) and really it did not look too bad (at least not compared with the previous one). So while momentarily celebrating this result I jumped immediately in my mind to - how long might this last? But for now just getting a green light for the first part of my summer (I have another scan at the end of July) felt like luxury.
I spoke last time about facing my fears. The main one is the prospect of leaving my children. Ned is the youngest and possibly the least aware of what is going on. Actually that would be unfair, it is difficult to altogether forget I have cancer but we work very hard to make sure life feels as normal as possible and is not dominated by my situation. I think the older ones are aware that I may die and I always answer any question they have truthfully, Ned does not ask questions and if I were to go sooner rather than later he would have more time as a child without his mother. I hate the idea that he might consider what life would be like without me there but at the same time I want to know that he has at least considered it as a possibility, so that he can explore what that might feel like and in some sense be more prepared than were I to be run over a bus with no warning. I was not sure how I would raise it with him, or when would be the best time. As it is I am looking pretty well and to all intents and purposes, if you didn’t know, it would be difficult to tell there was anything wrong. I had thought I would raise this as and when I became more obviously unwell. But the opportunity arose and I took it, encouraged by some videos I watched on a site called Wiston’s Wishes, which is a site targeted at supporting bereaved children. These videos followed families where one parent has a terminal illness. There were various professionals involved in each case including a child psychologist, and the message from this was very clearly that it is really important to engage your children fully and in good time. As I still have aspirations of cheating death, I need to balance how soon we address this directly with the kids, but certainly ensuring, at this stage, that they are aware it is a possibility, is important.
So the opportunity came one day a few weeks ago when I was driving Ned somewhere. We were alone in the car together. He told me that he had watched a video at school about the key to success and that what mattered most was not how intelligent someone was but how much grit they have. Now Ned has lots of grit. He is a very determined and resourceful, but sensitive boy and he clearly liked the idea that grit was the key. This opened the opportunity to explore life and how grit can hold you in good stead. He had done a piece of homework for geography which had involved writing a diary from the perspective of a child in Syria who makes their way to Europe. He had to explore the various factors that influenced the child’s decision to, and ability, to flee and make his way on the treacherous route to the UK or Germany (Germany more like!). He had really enjoyed this piece and took such a long time working on it. So I used Syria as my example. I moved the conversation to how much grit those refugee children from Syria would have to have right now and how did he think he would cope if he was Syrian had lost both his parents. I decided to go big time, both parents, not just one. He immediately focused on how he would escape and what he would do - rather than the fact that he had lost both his parents. I tell you if there was a zombie apocolypse you would want Ned on your team. I moved the conversation to life and how there will always be challenges and difficult times and the important thing is how you deal with them. Did he think he had any really big challenges in his life? He started looking around the car awkwardly and said yes he did. ‘What, my cancer?’ He nodded. So I went for the jugular. ‘Do you think you would be OK if I died?’. He looked a bit embarrassed - so I asked him if he had ever thought about it and he said he had. I was pleased he had. ‘So would you be OK if I died do you think’. ‘Well, hmmm’ he looks around and then stares ahead a bit ‘Umm, I might cry for about an hour’ ‘Only an hour!!!?’ ‘ Well, maybe two’. And we turned the conversation into a joke as I berated him for the pathetically short time he thought he would cry for me. But the conversation was a real landmark forme. I felt relieved to have had it, and to know that he is not so naive as to not have considered this as a possibility. I know there will be lots more work to do, but I hope I have plenty of time for that.
When my liver was bad I simply couldn’t imagine how I would fit in all the things I wanted to do before I die with my worklife. I love my work and so any decision to stop working, or cut down drastically really would be a significant move. At this point it would be symbolic of me starting a kind of countdown. But as I have just experienced, things can get pretty rocky and you can pull back from the edge unpredictably. I reckon the chances of pulling back from the edge reduce as I work my way through treatment options, but I hope if I have another wobble I will also have a chance of a redress. As it was, I was in the middle of my wobble and so arranged to talk to my boss, who I have worked with for many years and has been incredibly supportive, enabling me to work very flexibly and around my unpredictable treatment appointments and ups and downs. I talked about what the options were and we agreed that I should consider how much I felt I could work and they would support me in this. After my scan however, I feel in a completely different space, and for the past few weeks have honestly barely thought about my situation and have simply enjoyed every moment and continued working as before. I am probably consciously stopping my mind roving into that cancer space more than necessary as it is so all consuming. I just want to be me again, even for a short while and part of me is my work. Since my scan I have been to Copenhagen for 6 days to participate in the bi annual Women Deliver conference which was hosted there. In my field this is an amazing opportunity for those devoted to supporting women’s position in the world, health, educational, rights etc to come together and share learning, strategise together and it is a great opportunity to feel reinvigorated about the issues.
Normally attending a conference like this would be par of the course in my work and I travelled regularly to places like Dar es Salaam (Tanzania) Kano in Northern Nigeria, Freetown (Sierra Leone) and Addis Abba (Ethiopia), Seattle in the States, Geneva and on. But I have not travelled for work since my diagnosis. We have reorganised how I work, but I have missed engaging with the many people I have worked with over the years I have worked in this field, and usually met in person on one or other of my work trips. As this is arguably the largest conference of its kind in this field with over 5 1/2 thousand delegates, many many people I have worked with over the years were also there. So in addition to the content of the conference it was so refreshing to be out and about, as I used to be, and meet up with people formally and informally. Most people I work with closely have heard about my situation either from me or indirectly through the grapevine, but there are a few who did not know. A couple of those I told in person when there. While we have worked together on and off over many years, I am unlikely to ever work with them again in any substantial way. And I wanted to say goodbye. I am taking my preparations very seriously. It was a privilege to be able to tell them how much I had enjoyed working with them and to hug them goodbye. I may well hang around for a long time but I may well not and if we all had the chance to say our goodbyes in person, weprobably would. So I took advantage of being there with them. Perhaps it is kinder not to tell people, but I wanted to.
In terms of Copenhagen, I had never been to Denmark before. The weather was pretty miserable and the conference centre was situated in the middle of a construction wasteland. I did make it into the centre once by taxi (until I realised that a short 9 minute journey had cost me about £32), and it was very pretty. But the wasteland we were in, together with the cold dank weather made me consider the motivations of those Viking invaders of the UK. Although they were probably disappointed by our weather when they got there. We had chosen the nearest, best value (cheap) hotel to the conference centre. It was a 10 minute walk between the two. The hotel was called the Cabin Metro and was built to look like a ship. And as you might expect (except that I hadn’t) the rooms were designed like cabins on aship - or rather a cross channel ferry. We travel to France each summer and take the Newhaven - Dieppe ferry. It takes 4 hours and we often book a cabin on the way back after the long drive to Dieppe. The hotel room was a minature version of a four man cabin. There were bunk beds, with a ladder hung on the wall to get to the top bunk, and the beds themselves were outrageously thin. I am not very big so they were fine for me but we had colleagues from Nigeria and Malawi who were definitely larger than I am and they had to stop themselves falling out of bed.
The conference itself was opened by the great and the good. The conference featured amazing women who have all made significant contributions to women’s progress in one way or another for example Gro Harlem Brundtland (first female Prime Minister of Norway); Graca Marchel (Mozambican politician and humanitarian and widow of Nelson Mandela) and Annie Lennox (UNAIDS ambassador and general rock star for AIDS). What an inspiration and motivation for all those if us who have worked in this field for years, a task which can at times feel thankless or hopeless or both.
My feet were playing up from the Xeloda and so the walk between the conference centre and the hotel was hard, I bought 3 different types of shoes so I could change them frequently and vary the pressure points. I also tried taxis, even for this short distance, until I clocked the exchange rate and realised I would run out of money if I continued. I tried the metro once, on my way back from my trip to the centre. The ticket machine did not accept my card, rather looked like it did, twice, but never gave me a ticket. I rang my bank, who could see the transaction leave my account, but there was no one at the station to ask. So I travelled the Metro ticketless. It is fascinating because there are no ticket machines at entries and exits, in fact I did not have my non ticket checked once. People are expected to buy a ticket and there are random checks. Apparently Sweden is consistently the happiest country in the world in a survey that calculates happiness. It has one of the most gender balanced Parliaments in the world, I think beaten only by Rwanda. It also turns out to be my country in my office sweepstake for the Euro 2016. It may be very happy but I am not sure their football prowess is going to reward me.
The days were long for me and I missed home and my ability to follow my various supportive approaches. I did not have a juice for 5 whole days. The longest I have gone juiceless since March last year. There was not a juice bar to be seen. At the airport on the way home, however, there was the most amazing organic juice bar. I was like a child in a sweetshop. The queue through security was pretty long and I reached for a magazine I had picked up from home. It was a Sunday Times magazine and there was an article on the front I had wanted to read, so I had shoved it down the front of my bag. I had been carrying it around and would most likely have thrown it away once I got home, but given the queue, it was the easiest thing to get my hands on to fill the time while I queued. And as if by some twisted fate, in addition to the article I had wanted to read, there was one which featured a pretty twenty something “I was on my gap year when I my mother received a terminal cancer diagnosis”.
It was an article by a woman who, just like Ella, had found out that her mother was ill while on her gap year. In this case they waited until she got home to tell her. I am not sure Ella would have forgiven me had we done that. Her mother had lived for another 10 years and she was writing about her after her death. It was excruciatingly painful to read, but I could not put it down. It described the days and weeks after her death. Clearing out her things, looking at old memory boxes and working through her wardrobe. The section that had me biting my lip to hold the tears back described her telephone. She had been part of a family group chat and they kept her on it after her death, no one wanting to suggest they remove her until one day she wakes up and there is a message ‘Mum has left the chat’. Her contract must have come to an end. The loss she felt after this so modern a reminder of her mothers absence was palpable. I tried to think of the many virtual spaces I inhabit, and wondered what would become of them. Do they become shrines, historical repositories, fragments of life and memories? Can you save them or do the facebooks of this world suddenly decide that the period of inactivity has been too long and you have not accepted their new terms and conditions and therefore they are going to just close your account down without warning. I have a twitter account, which I was going to use to advocate for the things I care about in my area of work, but then I got cancer and could not work out how or if to use it anymore. These are just the obvious two, there are more through work, then family groups too. A very modern dilemma.
I am in France at the moment, spending a week with Rupert. We did this last year and planned to do it again this year. The weather is atrocious but it is lovely to be together. We were joined at the weekend by my two best friends from my school years and their husbands - who are great great friends of us both. We have not spent such concentrated time together (without children) for a very very long time, possibly never. I have not laughed so much in ages, I almost choked on an olive I was laughing so much at one point (probably at a joke I made). They are both godmothers to Ella. We talked of the future among remembering the past. Rupert was sent a book by a friend called the Council of Dads. It was written by a man who learned he had a terminal cancer and he established what he called a Council of Dads made up of his very best friends so that they could keep him alive for his kids when he was gone. We decided we like this idea and that weekend was the beginnings of the Council of Mums that I will set up among my closest friends. We will set up a Council of Dad’s too, made up of Rupert’s closest friends, including my best friends husbands who have become some of Rupert’s closest friends, but their job will be to keep an eye on Rupert. It feels good to be building the structures that will remain if and when I am not here, to keep my loved ones supported.
I continue with my supporting strategies for healing, I am getting better at exercising, I continue juicing, infra red saunas when I can, mediation daily (lots still to learn) and a range of supplements. We have summer planned with the kids. Tom turns 18 soon and Ella 20 even sooner. Tom is in the middle of his A level exams and that will be the end of his school life. A me before cancer would perhaps have mourned the passing of childhood, but right now I feel every major landmark I am around for is a major achievement. Perhaps cancer will protect me from the impact of the children growing up and leaving home. I want nothing more than to see them confident and able to be independent having had a stable and loving childhood. I am close, but not close enough. My focus on staying alive continues.