Life after Treatment

Life after Treatment
June 30th 2011

Almost 5 months on from my last radiotherapy treatment – and I have not updated my blog since my final chemotherapy. I had a good 8 week wait between the last chemo and the first radio appointment – as there is a wait in Brighton (there should be only 4 weeks wait). Radiotherapy involved a pre-visit to take all my measurements so they could calibrate all the lazers. The process involved tattooing 2 small dots on me to use to make sure the machine was lined up properly each time. One of these dots is around on my side and I can barely see it even if looking in a mirror as it is in such an obscure position. The other dot (a blue one) is smack in between my breasts. It may not be immediately obvious to an observer not wanting to focus too closely on my cleavage – but I can see it very clearly. My eyes are drawn to it every time I wear something that is even slightly low cut. A slightly odd coloured (very symmetrically placed) blue freckle cum mole? Something for me to remember it all by. I wonder if one day someone with a similar blue tattoo might not recognise mine – and we will give each other a knowing wink.

There was a confusion about whether I was to have radiotherapy 20 or 15 sessions – but in the end I had 15. One a day for 3 weeks (excluding weekends). My appointment times varied each day but were generally towards the end of the afternoon. There was a groundhog day feeling about each visit after the first. I would arrive, get sent to the relevant waiting room (there are about 5 machines so more than one waiting room), sit and wait and look around at the others all waiting. There was a very collegiate atmosphere – huge kindness – we all knew why we were all there. Everyone had their own story. I never spoke to anyone about theirs though – we would talk about all sorts of other things – but not why we were there. The longstanding joke (as I would often meet the same people who clearly had a similar appointment schedule to mine) was to nod to one another on arrival in the waiting room and greet each other ‘Fancy meeting you here’.

The radiotherapy machines are huge, with a laser looking part – which revolves around you when you are lying on the bed (a hard metal bed not a soft comfy one). There are no curtains so you feel quite exposed. As you walk in the room there is the machinery and at least two staff in the centre and to the side (with no curtain) a chair. This is where, in full view, you have to take off relevant articles of clothing (which in the winter can take some time) and then walk across the room semi-naked and climb onto the bed and lie down. I would put my left arm above my head and then the radiotherapists would prod and poke me gently, shuffling me around until I was lined up in exactly the same position each day. This was the longest part of the procedure. They would then disappear into a little room – and an ‘ON AIR’ type light would flash so you knew when the treatment had started. You can’t feel anything but you can hear a high-pitched noise while the laser is shooting radio waves (?) into the right place. To make sure they get to where they want exactly they need to get at it from various positions – I had to stay dead still – holding my breath so I would not be radiotherapied on parts that were not meant to be hit – and the machine would reposition itself. It did this 3 times – and in total the actual time during which the radiotherapy was being administered was probably just over a minute and a half. Each radiotherapy room had something different on the roof to contemplate (my favourite was a picture of blue sky, branches and leaves) – and there was always music in the background. The radiotherapists would then come back in when safe – I would get dressed and it would be someone else’s turn. And on and on.

I was lucky and did not feel too bad through it all – it does make you feel rather drawn – but then I am not sure if this was more to do with the fact I was at the end of 6 rounds of chemo. During the last week I got a gentle sunburnt tinge over my breast and surrounding area (this showed how much of me the radiotherapy was covering – as you cannot feel where it is hitting I was surprised at how much of me it had targeted).

The main issue around these 3 weeks of radiotherapy was the atrociously cold weather. So even though relatively warm – removing your clothes in a big open room was pretty chilly. Worse were the 3-4 days when the snow and ice was so bad that it was not possible to drive anywhere in the city. We had been given instructions about what to do in the event of snow – which were that, if you lived in Brighton, you should get to the unit as early in the morning as you could – as all those from the surrounding area – many who had to travel from quite far every day – would have trouble getting there in the morning and would therefore only be able to get to the unit later in the day. The only way for me to get there on those days was to walk – about hour there and back again. The appointment system basically went out of the window on these days, so the wait was huge. On one day I waited over 4 hours. I was lucky though as I could get there. Many were coming from places which were impassable. Even those living in Brighton, but with limited mobility, had trouble as the council did not even clear the main road that runs up to the hospital. Only the roads directly outside the hospital were cleared – by the hospital.

I finished the radiotherapy about 4 days before my 40th birthday. Which as you know had been planned for many months. It would be a wig party. All but me had to come wearing a wig. Just to make sure life didn’t get too easy for me however – the 18th December was the worst day that winter. Much of the country became absolutely impassable. The snow in Brighton was heavy very early in the morning, but then settled and even started to melt – but not everywhere else.

Most of the day was a series of phone calls from friends and family saying they were unable to come because of the snow. I tried to sound as understanding as I could but through clearly gritted teeth – hugely disappointed. At one point it looked as if even people who lived in London would not make it. My friends from Spain all arrived on the Friday before things got really bad – but many from far closer could not get out of their roads. The party, which we held at our favourite restaurant in Brighton, was just fantastic. So many people I had not seen for so long – nearly a year for many as I had travelled only very little since being diagnosed and since radiotherapy not at all.

That is a small lie. I did travel to Cambodia and Nepal between chemo and radio therapy, but that is different as it was work and I saw only friends and colleagues who I work with. I had read that the most difficult time for many women who have undergone what I have is the time after treatment, suddenly feeling unsure and lost – wondering where to start again – could they just carry on as before. Should they? No treatment, no appointments – just life again. I worked all through treatment (with a few more days than normal off of course) both because I love my work and we had so much on but because it felt normal. But also because I knew that I would have to go back to normal again soon after, so this trip was part of preparing for that also. It was also the first time I had been on my own since diagnosis. I have been incredibly well cared for and loved, but I have had to be strong and together for the children in particular, who were beady eyed for any sign that I might be lying to them by reassuring them that it was all ok and I was going to be fine. The household mood was very much linked to how I was and if I was perky and happy the household was. I was in fact pretty happy all the way through so it would be lying to say I have spent the last few months putting on a brave face, but I did not have time on my own to just think. I had been driven along with hardly time (rather I had the time but it was not the right time) to look back and reflect and just try and work out what it has all meant. What was all that about?!

The party was wonderful and enough of those I love were there to celebrate. Most had not seen me for quite a long time and so had not seen me with no hair. My hair by 18th had grown just long enough to wear without a headscarf. It actually looked pretty funky. It was brown – which I always knew it had become over the years but had never accepted this so had never actually lived as a brunette. Since then it has grown, and not only is it just brown, but it is ridiculously curly too. I look completely different. I have had to say to quite a few people who I know less well, but have known for years, ‘hi it’s Louise’ – as they have simply looked through me – completely unaware that it is me. My mother in law, who also did not see me with headscarves, said the first time she saw me with my new hair that I looked like me sister. Not my actual sister – but it was as if she was talking to a sister of mine.

After the party, we had a Christmas at home but then flew to Egypt for 10 days – to Sharm el Sheik – where a shark had recently killed some poor German woman and mauled a couple of others – so the sea was closed. This felt an appropriate end to a rocky year. We needed time as family to just be, no phones or blackberrys, work or school or doctors/nurses – just a pack of Uno cards and some time. It was not as warm as we would have liked but food was cooked for us and the only decisions we had to make were about what we were going to do that day. The pools were pretty freezing. I was determined to try and start getting fit as my body was rather flabby and yucky after all the poisons and steroids and lack of exercise, but the only way I could get in the water was to go down the children’s slide. Once you were on this corkscrew shaped slide there was no chance of turning back. We visited Luxor and saw the Valley of the Kings, went on a small boat on the Nile and went on a trip on buggies in the desert. Sharm itself is one long string of hotels catering for relatively cheap holidays in the sun – very little Egyptian influence at all – more of a package holiday fest which huge numbers of Russians.

Back home and life started pretty much as normal in January. The kids went back to school and Rupert and I back to work. I felt physically very well, perhaps a bit tired sometimes. Rupert still worried and worries about me but I am pretty tough. I am taking tamoxifen everyday, some side effects, but not so bad. It is now June. The time since January has flown by. It has been very mixed. On the one hand it was so easy to just slip back into life as normal, but always in the back of my mind was the question What was it about life that got me where I am? Yes, I am always juggling a million and one things – but I am happy. It is hard to describe but one moment I am getting on with normal stuff and then it hits me and I have a little peak backwards – and there is an overwhelming Wow! What was that all about? And then a bit of anger – how dare it interrupt my life so rudely like that. And then – maybe it is telling me something? What is it telling me? Is this where I radically change my life? Was this a sign to clear out and start again – give up working, learn to cook properly so I can bake those cakes I have never been very good at baking? Change career? I certainly learned over last year how many wonderful people I have in my life and how easy it is to be always going just too fast to fit them in and just spend time. But then, I think, if I give up work I will not be me? We won’t be able to pay the bills like we can now and then life would be stressful. I think it has taken me this long to write this because I find it hard to acknowledge, I am not sure I want to think too deeply about it all – although it is difficult not to. I don’t think I block it out I just keep moving forward, possibly this way it won’t catch up. I know I do need to address it, and I have begun to. I have every chance that I will live to a ripe old age. But in the back of my mind is my grandmother’s death from breast cancer (liver) 7 years after her breast cancer – and that is always lurking in the back of my mind.

It is also true that I did consider that I might die. I didn’t do that for very long once we knew how bad (or not so bad) it was – but it was long enough and I am not sure you ever get over that. It is not a bad thing – and I am truly not scared. I used to think I would be, I have always been a bit scared of dying. But in those early weeks when I had only general statistics to go by (and almost daily stories in the media about someone dying from it) I was upset. It has been like pinching a nettle. If you brush it too gently it stings – but give it really good squeeze and it doesn’t hurt. It is lonely as it is not easy to talk to your loved ones about all those thoughts and Rupert and I rarely did. The only person I did was my Aunt, as she had had a more serious diagnosis,we talked about it a lot. Not in a sad way but we would really just explore what it meant and would mean. For her, early on, it was about seeing the garden shed finished and the flowers she had planted. I was working on a 5 year time line – the what if I was one of the 25% that did not make it to 5 years (this is before I had my own individual risk worked out). I thought of Ella who is 14. Were I to make it til she was 19 I felt that she is such a together girl, although devastating to lose your Mum – she has such a steady and strong character and foundation that I believed she would still flourish in life. Tom, still needs me and I wondered if in 5 years he would have grown up and grown stronger and more independent. William is also such a together little boy and I often feel is the least needy of me – he talks the least to me about how he is and his feelings – although he talks to me a lot about something he has read or learnt or watched. Then little Ned – who was 7 – five years would make him only 12. And that is not long enough. I don’t think of these things now – but I have to acknowledge that there were times early on when I did think about them – and when I would go into organising mode and start thinking about how I would organise my life if it was to suddenly be shortened dramatically. For a long while if Rupert pointed out some cottage in the property news as if we might one day live there – I would stay silent - that idea of ‘one day’ seemed under great threat and I felt I could only cope if I kept discussions and thinking within a closer timeframe.

Over the last 5 months my thinking has been different. I do occasionally think what if? I get a twinge somewhere in my body – almost certainly completely unsuspicious – but it just does not leave you – a tiny part of your brain starts to think ‘what if?’. I started to find that what might before have been a mild upset at work or home would take on a greater importance. One piece of work upset me disproportionately. Something I had worked on for nearly a year looked as if it might not happen in the end. This happens in the frustrating world of development and politics – but I felt so furious that I should have given all that precious time to this endeavour. I felt angry that it was upsetting me so much. I felt stressed and then stressed that I was stressed as I worried that this might get all those abnormal cells jumping – and angry again that how dare anything make me stressed. It was a blip but I think it was a culmination of me just coming to terms with what had happened. I had started overanalysing everything (and do still on some level) – particularly what I eat and drink. Do I have a second glass of wine? A pudding – too much sugar? Clearly something in my life had contributed to my cells going mad – so just eating, drinking and living as I had before did not feel right yet I was not ready to go on some dramatic diet – I did not want to be defined by my illness. Eventually I started reading a book I had been given when I was having treatment but I was not ready to read. It was written by a Doctor who himself got cancer, which then came back after 7 years. It is really a book about diet, lifestyle and stress – and I was now ready to read it. It became a sort of therapy. He goes through different foods and talks about the science behind their powers – eg green tea and tumeric (with black pepper) – incredibly powerful at fighting tumors. The basic tenet of the book is that we all have cancerous cells in our bodies – but that most times the immune system just keeps them under control – and that 85% of cancers are avoidable. What we eat? What our bodies ingest – toxins etc? how we live. All so obvious, but he wrote it in a style that is so logical. It was a revelation. Maybe I was just ready to listen. I have not gone mad but I have now taken a number of steps informed by this book and another I am reading – and since then I feel back in control. I feel well and I honestly believe that I have a role in keeping what he calls my ‘terrain’ completely hostile to cancer cells and my immune system strong. The changes I have made are quite simple – but all quite easy to incorporate into life without feeling as if you are depriving yourself of anything (well not too much). These include: changing my deodorant to a non aluminium one; using a water filter; using a stainless steel bottle to carry around water; buying organic most of the time; reducing dairy and using organic where I can (I am not prepared to give up my morning latte); reducing wheat intake – which I did already – and now barely eat pasta and only little brown bread occasionally; increasing intake of non processed foods; grains and seeds; reducing intake of sweet things generally (including fruit juices); using creams and products that are either eco friendly for the house or natural etc for body and face (I have since heard bicarbonate of soda is good for washing hair - so will try this); reducing dramatically meat eating; uping exercise (this is hard but I have to be strict with my time) and I am working on the ‘mindfulness’ bit. One writer suggests that a first step in lowering stress (if you find slowing down hard) is to act relaxed – that way tricking your body so your heart slows, your breathing and the rest of your body also. I am still at this first step. I am fast through and through – so this is really, really hard – but am working at it. I often find myself curling up my toes or with my hand squeezed into a fist or fiddling with something. I do a tense check now when getting into bed – and uncurl my feet and relax my hands. I find my brain less easy to control – but am working that too. It goes ten to the dozen – but when I manage to declutter it I have inevitably forgotten to do something – as a bit like a juggler – if you lose concentration on one call you drop the rest. So I have to learn to do this mindfulness thing and not drop my balls.

The last thing I will write about is my brain. Certainly during chemo, during the days directly after a session, my brain just slowed down. I could think and talk but it was just fuzzy and slow. I began to frequently completely forget words – words of everyday household items and even people’s names which I really should know. I started to learn piano as a way of trying to give my brain a workout. I did my Grade One at the same time as Ned. My exam was during radiotherapy (that’s my excuse) – but I found it completely terrifying and I felt ridiculous. A boy of about 12 was in the waiting room before his exam practising his hugely complicated grade 5 exam piece. Ned, who was 7, was totally unfazed. He went in before me. By my turn I was all in a fluster. The examiner was around my age – made me feel even more ridiculous. She started me on a very very simple piece – C contrary motion – honestly very straightforward. I relaxed a bit and went for it – no mistakes. Then I heard her asking kindly if I wanted to do it again but starting on C? I had blindly looked at the keyboard and started on B. From that moment my fingers started shaking – and I managed to hobble through the rest of the exam. I did pass. I wonder how much she just felt sorry for me and wanted to give me some encouragement to keep going. But I am stuck on doing the scales hands together already. I think this is really old brain and old hands rather than chemo – but I do still have moments when I simply cannot think of a word, or I lose my thread and honestly know I will not find it again – it is as if it just vanishes from my brain. I have tried to read about this as an effect of chemo and there is an effect on the brain – but I cannot find anything that tells me if it goes away. I like to think it will if I just keep doing some brain exercises to keep those synapses rejoining and sparking and jiggling.

Apart from my frizzy brown hair, I feel me – just a slightly different me. I feel calmer and am more focused about taking the right steps to deal with situations in a way that will keep me calm and detached where necessary. I feel different – deep deep in my soul different. I marvel at how lucky I am and wonder if all of this was one big lesson.