The first two days were the worst. I took a valium to help me sleep on the second night – the demons come out at night. We had William’s 14th birthday on the Saturday and had a full day planned. The thought of telling them anything before then was too awful so Rupert and I kept it to ourselves and a few close family and friends. I didn’t cry at first, Rupert did. In the meantime I had been searching the internet, buying books, reading cancer survival stories and began putting together what has become my action plan for living. On the third day since finding out I sat in bath and bawled. But it was not miserable, woe is me, cry it was just free flowing tears which I had clearly been holding back and they simply needed to burst out. It was a gulpy, snotty, tears rolling down the cheeks cry. I felt invigorated after, and cried on and off much of that day. I felt liberated and free somehow.
Of course my first internet searches were in the pursuit of determining how long might I have? It felt as if this would then answer a range of other questions about what I do next. Do I stop working? Do I start writing notes to my kids? Do I finally organise the family photos which are in state of chaos – some print, some videos on out dated tapes or disks and others on computers and clouds. Do I wear pink and run marathons? I think the crying on the third day, was triggered by the daily reality of life. I woke up just like every other day. And I was still here. What to do? I felt the same. I looked the same. Hmmm. I might die. I will die. What in fact was different to a week ago, except that it was more abstract then.
I have since been reading inspirational stories of survivorship and approaches to take some control of supporting your body to become a place that cancer cannot thrive in. Which in practical terms means I am now a vegan, organic where possible, non alcohol or caffeine drinking person, doing yoga – at times at 5 in the morning (apparently the most powerful time of the day) and taking a number of supplements which we have researched. There will be more on this later as it rather dominates my everyday life at the moment in an attempt to find food that inspires and keeps me well nourished during the weekly chemo.
In the meantime I have been overwhelmed with love and gifts from across every branch of my life, family, friends, neighbours, work. I went to a boarding school and spent the ages of 9-17 with the same group of girls, almost all of whom have remain connected and form a powerful support group. I have had a steady stream of presents from them (ugg boots to help with neuropathy from chemo, make up, books, supplements), letters, recipes, distractions (breaking bad, music cds). I have also been sent spiritual support from all over the world, I have a reiki crystal I wear round my neck, a rosary, holy water from Lourdes, a Japanese prayer, holy oil I have to administer to the liver area before going to sleep. I am being prayed for in Nepal (with medicine pujas), Colombia (a prayer network), Nigeria, Tanzania, Sierra Leone, America, New Zealand, Spain. Pretty scary stuff for those cancer cells. They should be very afraid. I have local friends going to great lengths to seek out organic ingredients which they cook (either with me – rather with me as the student, being not the world’s most natural or able cook) or that they drop off. I am incredibly lucky.
In the first week, days after being told and as I was embarking on my new diet (which at the best of times would have been hard on my body – as it was akin to a major detox) my oncologist organised a liver biopsy so they could confirm the characteristics of the cancer. This was booked on the Tuesday, two days before my first chemo. It involved having a local anaesthetic and a probe (forgive my non medical terms) being inserted through my back, just under my ribs (I lay on my side) with the aid of ultra sound so the radiologist (actually not sure what he was) – could see and aim for a tumor (I was not liking the idea that there was one big enough for him to actually aim for and extract – I thought salt and pepper sounded better, a bit smaller). But clearly there were at least 2 places where the tumors were big enough to extract a sample from. He went for the one near my back. After a few tests, with me having to breath in synch with him, he took a biopsy – and then a second. I felt I had been pretty calm throughout (I had the support of Lynette who used to be my Macmillan nurse but who is working as matron at the hospital I am being treated at – by coincidence and who has stepped in as one of a number of angels who surround me). The pain after the procedure I found unbearable. The liver does not hurt but the capsule around it can swell which puts pressure on nerves – which can result in deferred pain in the shoulder – which is quite weird – but I experienced it so it must be true. After an uncomfortable roll back to a recovery room and a delay while a morphine prescription was being organised, the pain was brought under control and I spent the day lying on my side, partially snoozing.
My chemo day is Thursday. Last time I had chemo one of my main chemo nurses was called Lou. She was loud and fun but my last words to her were that I hoped I would never see her again in this context. Lou is the main chemo nurse at the chemo unit I now go to. So I weirdly have the almost exact team I had before around me – chemo nurse, breast care nurse, oncologist. Lou is efficient, practical and makes the process as painless as possible. Last time I had a port in my chest. This time I have not had time to have one put in so they have been finding a vein in my right forearm or hand each time. I think they do not think this is sustainable as the veins can collapse and it is more tricky having to set it up each time but I like not having a port. This chemo takes only one hour to administer, plus half an hour before hand for the pre-meds (a steroid, piriton, an anti sickness and something else I can’t remember what). On top of that I have been enduring the cold cap. Which for those of you who read my blog last time, is a surprise – as last time the cold cap was utterly unbearable. This time I am fortunate for a new cold cap technology called something like Dignity – I can tell you it is absolutely not dignified in any shape or form. I will post a photo as evidence. It is more comfortable than the earlier version. Together with a shorter chemo session, meaning I only need to wear it for a total of 2.5 hours, has meant I have successfully completed 3 chemos with the cold cap.
I have to say I have felt pretty proud of myself. An extra incentive has been my excruciating experience of actually having to endure having not only dark brown hair (that no hairdresser will touch with dye for ages after the chemo), but curly brown short hair – my social worker look (sorry social workers). Really – do I really, really have to do that again. That makes me cry. I thought I perhaps had avoided this. But not so. Over the last 3 days our house resembles a hairdressers at the end of the day. Hair in my mouth, on my shoulders, in the food, in everyone’s food, over the floor, on my pillow, in my hat. I hoped perhaps it was just the ‘thinning’ that can ‘sometimes occur with the cold cap’. But the hair just keeps coming out.
I booked an emergency appointment with the hairdresser to salvage what we could. I had not washed my hair for 10 days to avoid losing pieces unnecessarily. During the salon hair wash (in a private space in the hairdresser – both for my own privacy but also I realise I would not have been a good advert for the place) the hair continued to come out. I had two people trying to then brush the remainder, minimising the pulling. But on and on. I left with a bald patch at the top of my head, a parting that looks more like a river than a little stream, the top half dark new growth – roots which would normally be coloured – and the bottom half dry, dead, scraggly, thin hair. The hairdresser was clearly skilled at working to make thin hair look as big as possible –and a lot of diffusing and puffing went on at the end. With a hat, I have enough hair that it is passable as hair. But it continues to come out and going out with no hat or bandana is absolutely not an option. So I have an appointment at Trendco – the wig and bandana specialists. And I think my fight for my hair may soon be over. The question now – is wig or bandana? Which wig? How about having multiple personalities, bald one day, ‘clarissa – the brunette’ (the wigs all have a name) another, ‘kimberly – long and blond’, the next and a few bandanas in between….