It is 30 degrees and I am sitting in the Botanic Garden Cafe in Gottingen. The flowers are fading, a powerful visual reminder that summer is ending, despite the heat today. I am here for the treatment I continue to receive here, usually monthly but this time given the summer holidays, the gap was longer - about 7 weeks. I left booking somewhere to stayfar too long. Goodness knows what ishappening in Gottingen this week but I could not find a single airbnb or hotel in the central area and so am about half an hours walk away in the Hotel Astoria. Room 13 at the furthest end of a very long, yellow corridor on the first floor. The room overlooks a big red Mini-Mart and Toys R Us sign in bright lights, a road system and a car park. The room last night was stifling but with my eye patches and earplugs I slept ok. Before I came I had my routine blood test at home, which shows a continued rise in one of my liver markers. The others look OK but none are going down. I asked to delay the scan as I feel very well and have no obvious symptoms. Scan’s are the cancer sufferers nightmare. Their very prospect ties your stomach in knots as the results can mean your immediate future can change overnight and you temporary calm is destabilised. You need to go through the possible scenarios to simply prepare yourself, not only for bad news but what it might mean. Fear in a consultation can make you forget any reason and perspective so to pass through the fear in advance and consider what might happen and what you might want to ask when you go and get the results is a good way to prepare. But there is a limit to how many times a person (and their loved ones) can go through this so it was good to delay it. I am concerned that the liver bloods are indicating that the cancer is active again and I need to decide what to do about it.
Next week I will have an operation to remove my ovaries and fallopian tubes - a ‘bilateral salpingo oorpholrectomy’. It is key hole surgery, which I think always gives a false impression that it is almost as straight forward as cutting your toe nails. In practice it involves pumping your abdomen with gas (which takes a good while to go down - ouch - and I have yet to work out how the gas is actually released - or is this too obvious??). They have to cut through some muscle and then cut the bits out and stop the bleeding with a bit of stitching somewhere along the way. It involves a general anaesthetic. I have had wildly differing descriptions ranging from people who almost went back to work a couple of days later to others feeling they had been kicked by a horse and it taking weeks before they felt themselves again. I would of course like it to be the former but I am not quite as robust as I used to be. Staying busy is a great strategy for good mental health in my view and so the prospect of being physically confined in anyway is not good. But I need this operation because firstly my cancer is strongly estrogen receptive and this will reduce the amount of estrogen in my body available to it and second it also opens up other hormonal therapies that require you to be post menopausal. Last year I was having routine Zometa monthly, a horse sized (possibly exaggeration but that is my view) injection in my stomach which I hated and threw me into 3 days of post injection symptoms. Using this type of approach is time limited and it is better at this stage to get on and get my ovaries out. There is a trial of a new hormonal drug I may be eligible for if I have confirmed progression, but only if I am post menopausal.
Then there are the after affects of surgically induced menopause. Hot flushes, reduction in bone density, dryness, skin thinning, hair thinning - basically turning into an old lady sooner than you might otherwise as far as I can see. But I have really been bombarded since my first diagnosis and have only variously experienced the above but think that for the most part I will not be dramatically hit as I have already had so many treatments to reduce my estrogen. Fingers crossed.
While I am on a bit of a roll about my physical ailments (I do so hate to focus on the failing state of my body as really I have been running daily, juicing and feel great) - but I am going to mention my wrists. Over the summer I have developed terrible carpal tunnel syndrome. I was susceptible to it before my cancer and experienced it during pregnancy, but this is something else. My wrists are visibly swollen and there is fluid pooling in the backs of my hands. My right hand is worse than my left but both fizz and are numb on and off throughout the day. Anything that requires a pinching movement, even driving the car aggravates it and I have to stop or move my hands to relieve it. At night it wakes me 3-4 times, and almost always around 5am. Only sitting up and hanging my hands by my sides and shaking them at this time will relieve them. By the time I get out of bed in the morning I have absolutely no grip and it takes movement to get them going again - but even then I am unable to form fist as I used to. I am not sure exactly what has aggravated it but it is without doubt the result of the various treatments I am on and have been on. A lack of estrogen for starters can affect this - but I think it may also be immune system treatments. The bottom line is it is not going to go away and will most probably only get worse so I am on a mission to find a resolution. This is likely to be a carpal tunnel release surgery. Basically the main nerves that run through your arm to your hand go through a tunnel (the carpal tunnel) which is not very big. Any swelling or damage can put pressure squeezing the nerves and starving the hand. So what do you do? You ‘release’ the pressure through a surgical cut or two in the right place. Margaret Thatcher apparently had the surgery - not sure that recommends it - but she was a pretty busy woman.
The fizzing and numbness and lack of grip are bearable but completely aggravating. My knitting (my very untalented attempt at it which gives me such joy) has almost come to a halt as has my colouringand writing for any time is also very uncomfortable. I can, thank goodness, still type. The bit that worries me most is that if I do not sort it out and I were to find myself - for the sake of being very dramatic - on my death bed - rather than soaking in love, attention and morphine I will be driven mad by the fizzing and discomfort made worse by lack of movement from my near to death lying down pose. I am not sure this jumps me to the top of any surgery queue - which by the way is as long as a very long thing - ‘Stage IV women, incurable, with carpal tunnel syndrome’ - they will probably slip me to the back of the list and hope nature is quicker than their waiting list. So I am investigating how to get it done privately. Things should not work like this but when you are where I am you have to take control. This will mean, among things, finding a time when I am in a stable state, not recovering from abdominal surgery, stable and with help to do the most basic tasks as if I have both wrists done at once I will be handless for a while. I have been spoilt over the summer as for most of it I have had almost all the children and still have Ella who continues to be my daily companion.
All I wanted before the summer holidays started was to be well so we could spend time together as a family. We had taken 4 whole weeks to spend in France. My wider family joined and over August we simply had beautiful weather and such happy, happy times. We had A’level results and some GCSE results and Tom left us early to travel around Europe with his friends. We also said goodbye to Ned. Ned is spending a term in Singapore with my younger sister and her family. This was a plan of mine for a while.
After my experience in March when I wondered if I would see Xmas I have been facing up to my fears so they do not derail me. One of these is the prospect of Ned growing up without a mother. Of course I feel the same for all my children, as a mother is a mother regardless how old you are, but he is still a child. The others are already the formed people they will be and so nearly all into adulthood. For Ned I had a vision of me not being there and his brothers and sister being off at University, working or travelling and only Rupert and he at home. Rupert will have to continue to work even if he were to take time off or rearrange how he works, but for Ned’s life so far he has been surrounded by noise and bustle. The idea of Ned alone in the house after school or at weekends is unbearable. He also needs a mother figure. My sister lives in Singapore and has 4 children of her own, but they are younger than Ned with the oldest only a school year behind, so he fits well given their age ranges and now has experience of being the eldest. He and William visited her over Xmas and he built a nice relationship with my sister. So on compassionate grounds his current school is holding his place for a term while he spends a term there. For him this was an exciting prospect, he couldn’t wait. The school there were very good and accepted him and he now has a Singapore Student Pass. We facetime daily. I miss him. We all miss him. The house is strangely quiet. We can tell he is not aroundas apart from his obvious absence biscuit packets stay closed, there are no strange inventions or fire experiments and the number of experimental cake making has fallen to zero. But he is having such an amazing experience. A new school (he is at the international school), lessons by ipad (what happened to pen and paper?), new friends, noodles, rabbits, a cat, hamsters and his cousins. In many ways it is like sending him to boarding school but not like in my day where I did not see my parents for a whole 3 and 1/2 months at a time, didn’t speak to them as there was no facetime and certainly no email. He is with a loving family and will be home for the holidays. But the family works differently when he is not here as it does when the others leave for whatever reason, travel, university. It is the universal reality of parenthood - children grow up and the best you can do is prepare them so you do not need you. In this case I am preparing him a bit sooner and for a possibility more profound than most children have to contemplate. (below is a photo of Ned at Heathrow about to travel solo/assisted to Singapore and with 3 of his cousins on their first day of school)
As if 4 weeks in France was not spoiling enough (we did actually work while we were there!) but Rupert and I ended the summer with a few days in Florida for our 21st wedding anniversary (we did not celebrate 20 years last year). Florida would not normally be our choice of a romantic break for such an anniversary but really we were there to visit Rupert’s beautiful Aunt Sally Ann, his only living relative of that generation having lost his Mum and Dad in 2 years. Sally Ann (Sally Ann Howes) is better known as Truly Scrumptious from Chitty Chitty Bang Bang. This beautiful British actress is now 86 and remains a force of nature. She is one of Britain’s treasures but like all of us, life will not go on for ever. I have been very close to her since we first met when I was 23. She adores her two nephews and has played a key role in both their lives. When I was diagnosed last year one of the consequences, I thought at the time, was that I would never see her again. So with my relative health we were determined to go and visit her and her husband Douglas.
When I first met Rupert at 23, we fell in love and were engaged in a very short space of time, so while I felt I knew his very core there were many parts of his life I was still to learn about. He had told me he was from a family of actors and musicians and that he and his brother had broken the tradition. At some point he had said his Aunt was in Chitty Chitty Bang Bang. I imagined some backing dancer in one of the sweet factory scenes and thought no more about it. Meanwhile my family were all very curious as to who this man was, he was 8 years older than me. We barely knew each other and were not connected in anyway before we met. In the December before we met (1993 - we met one month later in January 1994) I had spent Xmas with my family. After one rather drunken family meal we had settled to watch the annual showing of Chitty, a favourite in our house. A conversation had ensued. Who was the actress? It wasn’t Julie Andrews. So as the credits appeared (in those days you could not pause) we all crawled forward to be closer to the box to read the names better, but they sped past us and we missed it. A few months later Rupert and I were walking through Camden when we passed a cafe called Truly Scrumptious. As we passed he said ‘Look, they’ve named it after Aunty’. I stopped dead in my tracks. ‘You mean your Aunt is Truly Scrumptious’. Yes, he said, he had told me she was in Chitty. Heart racing, I found the nearest red phone box (again no mobiles in those days) and called my mother. ‘Mum, Mum! Guess who Rupert’s Aunt is?”. And after that all the little whispers wondering who this man was ended as it was now clear. He was Truly Scrumptious’ nephew. What more did anyone need to know?
Since that time she has added some glamour to all our lives. She has sung to 4 Presidents. She met Marilyn Monroe at President Kennedy’s famous birthday were Marilyn sang ‘Happy Birthday Mr President’ at which they arranged to meet for coffee until Marilyn’s untimely death. The event itself had been choreographed by Sally Ann’s then husband Richard Adler. But that is the thing about death, it comes to us all and Sally Ann is nearing her time. She has had the most remarkable life but cannot escape the discomforts of old age, the sadness of losing all your friends and the losing of your independence. We had a beautiful few days.
While we were there we spentsome of the time in a nice hotel near their apartment. We had decided that for such a big anniversary, and given my situation we needed to take the ‘sea view’ principle - do it while you can. We had in fact seen the prices and decided that partial sea view was good enough. Brexit added to the pain as had we paid when we first booked it would have been a good third cheaper. But as it was hurricane season and the hotel was under half full so they had up graded us to a full sea view. We slept with the window open and could hear the whoosh whoosh of the sea. One of the nights we had a disagreement in the middle of the night. Rupert thought the wind was a bit strong and the noise was keeping him awake. I was quite happy, enjoying the bluster, but he shut the window. In the morning we had texts from family - were we OK? Had the hurricane hit us? As it was we were in fact on the other side of Florida from the hurricane but we had clearly, unknowingly, experienced the tail of it.
At breakfast the first morning I was suitably excited when I saw there was a ‘Raw Food bar’. On closer inspection it consisted of a few pieces of watercress and a plate of some raw spinach. There was also some interesting looking grass (see photo). Perhaps this was tall wheatgrass, I thought and looked around for some sissors or other implement to cut it with. But there were none, which made me think. Is it there to eat or for decoration? Why would you have grass on a raw food bar that was not for eating? So I surrepticiously ripped a few strands off and stuffed them in my mouth. Grass - it was definitely grass. Maybe this was a raw food thang in the United States. I thought I had better ask someone and as cooly as I could, making out I was simply interested and had not intended to actually eat any of it, I asked one of the servers, who confirmed it was just there for decoration. I was not the only person to have asked apparently - which makes me wonder why they hadn’t rethought their decoration strategy. And I slunk away with some spinach and watercress on my plate.
One thing America has which we do not is Whole Foods. I know there are more stores here now but not in Brighton. Whole Foods for me (known there by many as Whole Pay as you can spend all your money in your excitement) is a cathedral to organic food and non toxic, ethically sourced food, supplements and other products. We have Infinity Foods which is pretty lucky but Infinity has a long way to go if it is to match Whole Foods quality and choice. There was a store near where we were staying and I made Rupert return there almost daily to get my organic juice and vegetables and more. The choice was outstanding as was the quality of the fresh food.
We are home now. All is different with no Ned and Tom and Ella no longer at school. William was the only one up and in uniform on the first day at school. Every year I have taken the traditional first day of the school year photo. This year it consisted of William. I feel rather in limbo as I have no definite proof the cancer is on the move but in the past the liver marker that is rising has always been the first sign of this happening, so I am getting myself ready just in case. Ovaries out first.
I have added 2 new treatments into my mix since getting back. One is chinese medicine and the other is GcMaf. I had had acupuncture before but not regularly and this time I am going to a fully trained Chinese doctor and starting a course of acupuncture and cupping (to release toxins, strengthen immunity and stimulate blood among other things). I have found someone I consider very good and after my first session with him I had a temperature during the night, which I interpreted as a good sign, my immune system had been given a jolt. The GcMaf is more controversial. I have been researching it for a very long time and heard all sorts of views. I am convinced there is something in it and have finally tracked down a supplier I think is most credible, with published papers on line. It is a Japanese family of clinics Saisei Clinics, which offers a whole range of non toxic approaches and immunotherapies (http://www.saisei-mirai.or.jp/immunotherapy/index_eng.html). They had been recommended to me before but Japan is not practical. Although I may change my mind if I believe they have something to offer I cannot find elsewhere. GcMaf or GC Protein derived Macrophage Activating Factor is ‘a highly effective macrophage activating therapy, used to stimulate the immune system and activate macrophages so that they can destroy cancer cells and other abnormal cells in the body’. I am not going to sell it, as I have not really started it yet as my consignment is stuck in customs in Coventry, but I have read enough that makes me think it is worth adding to the mix. I will report more as I go.
According to the Japanese Clinic it can be used as part of an integrative approach. Other suppliers insist it will not work if you are on chemotherapy and that you need to be on a ketogenic diet. I do agree that it has a greater chance of working if you are not on chemotherapy and that a ketogenic diet is ideal but chemotherapy has a role, it can reduce the cancer load which can then give the GcMaf a more manageable task. On the ketogenic diet, I am more convinced about the role of sugar and carbohydrates but I find it impossible to eat ketogenic (almost no sugar, good fats, some protein and vegetables mainly). So I am going for low carbs at the moments, good fats, vegetable and protein but I have some fruits. I have eaten more meat over the summer, but not much and with vegetables not carbs (except for Friday market rosti chicken and fresh bread from the local french market which was a weekly treat).
I continue to write my stories for my family. My appreciation for writers has soared as I realise that despite a desire to write and things to say it is very difficult to find the time to get on with it. Here is something I have written about where I will go one day. Where we will all go one day for that matter.
Where will Mum go when she dies?
Well, that is a very good question and one Mummy thinks about a lot. Some people believe in heaven, a beautiful and peaceful place. Others believe we are reincarnated, that means we come back as another creature or person. Mummy thinks it must be somewhere in the middle. When you die she thinks it must feel like just falling into a deep, deep sleep but never waking up. Instead we find a kind of peace coming back to life as our cells are reabsorbed by nature. When she dies she will be the wood pigeon. Every time you hear it softly coo it will be Mummy talking to you, telling you she loves you and is watching over you. She will be telling you there is nothing to worry about and that she wants you to love life and be happy. She will also be the breeze*. The breeze that gently blows the trees making the branches bend and the leaves rustle. The breeze that brushes your face as you walk and ruffles your hair when you run. The breeze that wraps itself around you so that you know Mummy is there.
Everywhere you look you will see other Mummies keeping watch over their children. The bees buzzing, a dog barking, water running, cows lowing. They are the rain that trickles down window panes and drips off eye lashes, the clouds, always watchful, playing games in the sky, sometimes making shapes for you to guess what they are, other times covering the earth like a thick cotton wool blanket. Some Mummies are the snow falling silently, tickling your cheeks and freezing your toes. Others the waves on the sea shore, always present, always watching, talking to their children, sometimes, playing with them as they race and jump and whoop, catch me if you can, she will be shouting, ‘I’m coming to get you’ as she whooshes up the shore snapping at their ankles. You can find most Mummies in the light of a candle, flickering and dancing, watchingcarefully as you stare into the flame. Some Mummies are the blanket that covers you at night, protecting you, keeping you warm, keeping you safe. They are the heather on the moors, the daffodils in the spring, the leaves falling off the trees. They are everywhere. But your Mummy will be the wood pigeon and the breeze and she will follow you all through your life. When you hear her or feel her listen very carefully. She loves you.
*because every little breeze whispers Louise
I lost one of my new cancer friends over the summer. That day I saw a baby turtle struggling on the beach until a wave came and washed it into the sea to and to freedom and I imagined it was Graham, free now to explore the world with no pain.