Friendship, Love and Activism

Friendship, Love and Activism

So much has been happening since I last put finger to keyboard (and I do mean finger), that up to now I haven’t had the time or headspace to sit down and write. So here we go…

In January, my son Jacob went on tour, dancing as part of the Urban Strides Senior Crew. This entailed 5 weeks touring arenas in Sheffield, Birmingham, Manchester and at the O2 in London.

I am lucky enough to have been their official photographer for the past 5 years, documenting Jacob and his friends’ maturing, growing skill and ability. They performed, as part of the Young Voices Tour, in front of audiences of 15-25,000 every evening.

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These photos are from a medley which included a wonderful Star Wars choreographed dance/fight at the end, which always brought the house down. I cannot tell you just how wonderful these young people are, and how important their friendships have been to both Jacob and our family; I was invited to spend a week with them in Manchester at the end of January.

Too much time has passed for me to write in any detail, but what I want to tell you of is the truly amazing  amount of love and support that has come my way since this all began  almost 6 months ago.

At work, my managers have been extremely sympathetic and I was given time to spend time with family. I communicate regularly with them about my condition and treatment, my Occupational Health appointments and work pattern, which has been extremely stress free and mutually beneficial. My colleagues have been wonderful; not making too much of a fuss, whilst showing concern and support. It has been extremely important for me to get back to work after Christmas; returning to the job I still love. Luckily, throughout my therapy I have not become neutropenic, which has enabled me to work wherever I’ve been needed in the department, though I have had to take some more time off sick more recently. During the last shift I did I became extremely tired and short of breath after just 4 hours, and despite taking a break, only managed to work for another hour. As a result it has been agreed I will remain off work until I have completed my therapy in April, and my next Occupational Therapy review.

Friends have gifted me books and flowers, lovely messages and even letters. I have had an Olive tree planted outside a Hospital in Gaza, a dissertation was dedicated in my name, and our family tattoo was carved in wood. The generosity, kindness and care is very humbling and, at times, quite overwhelming. One of the most lovely way friends have supported me is in transporting me to and from appointments, or in joining the parties we throw during treatment sessions around my bed. I don’t think the unit, or the other patients, have ever seen anything quite like it. They make these long sessions a thoroughly enjoyable experience, where we put the world to rights, plan action and laugh, a lot. Colleagues working on site often drop in to say hello, and it is a source of great pleasure to see nurses I employed as a manager 10 or 15 years ago now wearing the uniforms of Matron, CNS or Operational Manager.

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My children have been magnificent. I cannot express how much their love and support has meant; how it has kept me motivated and my mood positive. The girls have taken me to most of my appointments and therapies, often taking days off, which they then have to make up later. They have both been very well supported by their managers. I often sit and read aloud to them, which is a real delight; this was something that had stopped naturally, many years ago. I remember the last book I read Abbie was Harry Potter and the Chamber of secrets, which I got half way through before she took it off me. Hattie and I are reading 1984, which is probably my favourite. I do sometimes wonder how they really feel about all that is happening, and I worry that I will not be there, at their sides, to comfort them as they grieve.

The children and I have had a meeting to discuss the contents of my Will (not that there’s much to leave), and plans for my Funeral. This was a conversation I never, ever wanted to have, at least not for many years, but is something that had to be done to try lessen their distress, and the workload once I am gone. Everything has been documented, and though there were a few tears, we walked round the house discussing particular items they would want to keep; relief came when went out for a meal in the evening, which meant the day ended in chatter and laughter.

Thanks to the People’s Assembly, I was able to address approximately 60,000 at a demonstration in Whitehall against the continued cuts, and crisis in the NHS, on February 3rd. The most amazing thing was to have my Brother Mike join me on the platform, having flow all the way from Delhi to attend, along with his wife Montse, from Asturias in Spain.

Thanks to friends, I have visited Cornwall for the first time. Squeezing onto a bunk bed every night, in a room not much bigger, which provided some amusement as we did our best to do so without banging our heads, or take off a layer of skin. The girls shared a double bed. My mate Chalky had come over from New Zealand to visit; we got to meet Danielle’s Nan, and eat her proper Cornish pasties…

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In mid March we’d been invited by 2 Scottish Nurses, Holly and Aimee, with whom I’d worked in A&E, to visit and stay on Skye, at their Mum’s B&B. Abbie, Lee, Hattie and Louis joined me for a wonderful holiday week. The weather was beautiful and so was the Island; truly magical…

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How am I doing?

Well, I continue to lose weight, and my appetite and swallowing has continued to be very erratic. I never worried about my weight prior to all of this, and had put on about 2 stone over the past 10 years; We don’t own any household scales; now my weight has become important. I’ve lost approximately 3 stone over the 6 months, and  I am now at 63.6 kg. I really can’t afford to keep losing 2kg every fortnight; I said to the CNS yesterday ‘ I want to die of Cancer, not starvation.’

The Chemotherapy has affected my taste, meaning that some foods that I loved, I can no longer tolerate; this is mostly cheese and chocolate. Sometimes foods get stuck – then I spend time in the toilet getting rid; this means that if we’re out I always have to know where the toilets are before eating. My swallowing is so erratic, that there are times when even relatively liquid soups and ice cream get stuck. I tend to snack more – crisps are out (sawdust), biscuits are in. Puddings are usually a good bet (I have always favoured savoury over sweet, but thats been reversed). My shopping bill is down, but I have also stopped cooking regularly, which is really upsetting. In the last 3 weeks my teeth have become oversensitive to anything hot or cold. This has been excruciating at times, waking me up at night and making eating and drinking difficult, if not impossible at times. Thank goodness Cathy introduced me to Sensodyne toothpaste and mouthwash, though paracetamol and Ibuprofen have been the best remedy.

The Dieticians have seen me on several occasions. I’m sure I frustrate them; they want me on a liquid only diet, but I just can’t tolerate that for more than a day. Eating is so much more than just a task, it’s a pleasure (or should be). It’s sight, taste, smell, and texture. This becomes even more precious when your appetite is reduced to a third, as mine is. So, I’m afraid, though I heed their advice, I also ignore it. I dunk biscuits in my tea, crustless bread in my soup. I eat pasta and rice, rice pudding and tarts, Brownies and ice cream, sticky toffee pudding and custard. I’m sure I frustrate the hell out of them.

I’m awaiting the last CT scan result, and some idea of my prognosis. Has the therapy helped to extend it, even a wee bit? Unfortunately it wasn’t reported when I was last I was in hospital, but hopefully I’ll have that discussion next Thursday.

In the mean time, in discussion with my Consultant about my outstanding issues with swallowing, it was decided to try a short course of Radiotherapy. My initial reaction was similar to that I experienced when I was told I would need Chemotherapy, fear. I’d asked if I could have a PEG (a Percutaneous Endoscopic Gastrostomy), a tube that is inserted via the oesophagus and out via the Duodenum, through the abdominal wall. I have cared for patients with these feeding tubes for many years; they are easy to insert and to give bolus feeds through. This option is still being discussed, but first the Radiotherapy, to see if they can shrink the Oesphago-Gastric tumour.

Firstly I had to attend a planning CT, to work out the depth etc required for the gamma radiation. Then an ink spot and a small pin prick below my sternum tattoos the site. The Radiotherapy began last Monday. It’s all very efficient. You scan a sticker on your schedule to book in, then take yourself to a waiting room. Within 5 minutes I’m laid on the table and the therapists ensure my position is exactly as it was in the planning CT. They check and double check my name and date of birth, then they’re gone and the machine swoops over me and around below me. The room is bright and then the noise of a reversing truck echoes as 4 Gy (Grays – named after Louis Harold Gray who developed an equation for the delivery of gamma rays and their absorption by different materials) are transmitted. The machinery whirrs and comes above me again; more noise. I count the beeps, 30, then it’s all over and I’m out within 10 minutes. There are many side effects, but so far I suffer none. I am receiving a fairly low dose, only 20Gy, when  radiotherapy often reaches 40-60Gy for many cancers.

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It is the same as it has been before, I put my trust in science, and my professional colleagues, who I know have my best interests at heart.

Lastly…

Abbie and Lee announced that they are expecting a baby in September. I never expected to live to be a Grandad, but now I am. I could not be happier. This is the best news, ever. I have named it Lentil, since that was it’s size when they told me (according to an app Abbie had on her phone).

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Now to look forward to my graduation party next Thursday. Care to join me?

Last Christmas

Last Christmas

Following on from my intravenous Chemo, I now have my phone alarm set for 8am and 8pm to ensure I take the oral medication on the dot (or near enough) every day. Initially the pain of the peripheral neuropathy was significant, and affected my fingers, toes, nose and ears. Going out, even with a hat and gloves, meant that within a matter of minutes my extremities would be on fire, and that any walk, or visit outside could be no more than 30 minutes. Even walking across the kitchen floor in socks was a bit of an ordeal. But, I count myself lucky; this side effect has reduced significantly, and now it’s barely noticeable. The only other, that I’ve noticed, has been a change in taste. Chocolate and cheese (and I love cheese) taste bland; the only things that taste good now are very tart, or sweet foods, like lemon juice, honey and fruits.

I don’t suffer any pain. I’ve had some intermittent nausea, and I’ve lost about 2 stone in weight, maybe more (I haven’t weighed myself in years). I do know I’ve lost 4 inches off my waist and now take medium, rather than large in clothes size. The last time I lost this much weight was after my marriage breakdown in 2002. I look a lot fitter, but of course I’m not.

There was a wonderful event on the following Sunday evening. I have been the official photographer for Urban Strides Street Dance family for about 5 years; since Jacob became a member of the Junior Crew. I have been privileged to watch both the Junior and Senior crews practice and perform, and have documented the Hip Hop Don’t Stop classes held every holiday. It has been really magical, watching the students grow, in age, height and maturity, and their see talents realised with practice and mentoring. The visiting teachers, many from around the world, as well as from all over the country, have become friends. Two members of this family decided to hold a ‘Dance for David’ event in High Wycombe. They’d managed to get teachers and students to donate time or items to a raffle, and sell tickets to the event to raise money for our family’s Bucket List.

It was a noisy, vibrant and humbling affair with lots of music and dancing; with Hattie and I proving that, in no way, should we take part in any form of body movement again, since neither of us has rhythm. Thankfully most of the others dance really well, and it was a pleasure to watch. 

The following Thursday I had my 4th CT scan. I had been warned to expect this would show further spread, since the immunotherapy would not take effect (if at all) for at least 4-6 weeks, and Chemo had only just begun.

During this time away from work I have been visited by many friends, and family, from all over the country, and have received many wonderful messages of love and support. I cannot express how much this has meant to me. Thanks to my friend Cathy, however, I got another, very special message from a very special friend. Film Director and Socialist hero, Mr Ken Loach, sent me a  postcard…

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Christmas was spent with family. Hattie, Jacob and I spent the morning opening our presents to each other, along with a glass of Bucks Fizz, then we went over to Wantage to join Abbie and Lee for the afternoon and evening. It was very special. They cooked a wonderful Christmas dinner, and we’d taken a vegan nut loaf which Hattie had made the day before. We talked and laughed whilst playing board games; he best of which was a new one called 221a Baker Street. It’s like an adult, more complicated Cluedo, with Sherlock Holmes having to visit various rooms to garner various clues to a crime. The idea being that at some point one player is able to say who did what to whom, with what weapon and why; having consumed a fair bit of alcohol, the girls had lost the plot early on, but no one got it completely correct, and it ended in anticlimax. It was a perfect Christmas Day…

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Boxing day saw us travelling north to visit my parents and Sister Fi, and family. Sally, Steff. Dylan and Una arrived shortly after us, and we took the dogs out for a walk up to Tegg’s nose. It was very wintery, with snow still on the hilltops, and though it played havoc with my peripheries it was great to get out in the fresh air. An evening of food and warmth, more games and chatter blew away the discomfort.

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Too soon it was all over and we were driving home because I had therapy the following morning…

At this point I have to admit that my mood dipped, just for a couple of days. The lead up to Christmas is always so long, then suddenly, it’s here and gone, all too quickly. I realised that this had been my last Christmas, and 2018 my last year. I’d wanted to savour it, I wanted to languish in the family, the chatter and the laughter. I wanted it to last longer, to mean more, to have been the best ever; it had been too fleeting. I am lucky enough not to have suffered depression since the age of 17 (the result of 3 years of bullying at school), but this knocked my normally positive outlook askant.

Equilibrium quickly re-established itself, and I realised that, of course, trying to attain some extra special, uber fantastic, supercalifragilistic experience is unachievable, unless you decide that every day and every experience is just that. It’s about what I discussed in my first blog, yet I’d temporarily forgotten; the extraordinary is in all the mundane, often repetitive and ordinary things we do, what we see, hear, taste and smell; the everyday interactions with friends and family. It’s about changing how we perceive these things. That’s all it took.

I do not want dates, especially Christmas and New Year to take on a different meaning. I do not want these to change to a time of loss, or sadness, but remain a time of joy, family, laughter, stupidity and board games. 

I was informed at my next immunotherapy session that the CT had shown further spread in the Liver and abdomen, and that there was now spread to the lymph glands around my oesophagus, and though I had been expecting this, it still hit me hard. The next scan, on February 1st, will determine whether any of the treatment is, even temporarily, reducing the cancer, and if the prognosis has changed, positively, or negatively…

Since then I have managed to return to work for a short shift of 7.5h. Returning to an Emergency Department which has been at OPEL 4, the highest alert for the NHS, for 2 weeks. It made me realise just how much I missed this team of super humans, and the job I love. I was lucky, I was super-nummary. I arrived just as the pressure on the system was easing slightly, but we have become so used to the pressure that what was abnormal and unacceptable, becomes the norm. All non urgent elective surgery has been cancelled for a month to free acute beds, and staff are to be moved from theatre recovery and the elective surgical wards to open previously closed beds.

Health Minister Philip Dunne, in reply to the crisis in A&Es up and down the country, with patients having to sit on the floor, that ‘there are seats in most hospitals for patients to sit on’.

Jeremy Hunt refuses to move cabinet positions, and is rewarded with a wider brief as Secretary for Health and Social Care. This despite the worst NHS winter crisis ever, and in a move likely to speed up the dismantling and privatisation of the NHS. 

As with the stages of grief, we are shocked, we deny, we get angry, we are defeated, and we accept… or not!

Fight for the NHS!

#nhscrisis #nhs

#toriesout!

 

 

 

The Good, the Bad and the Pub Crawl

The Good, the Bad and the Pub Crawl

It’s been more than 2 weeks since I last put finger to keyboard, and a lot has happened; so here goes my attempt to encapsulate the beautiful, awful madness of it all.

After returning from Calais, I was exhausted, physically and emotionally, but Chemotherapy was looming, and there were things that needed to be done in preparation.

So, on Monday my first was a visit to the Dentist. My Dentist went private several years ago, and there are no NHS Practices taking patients locally, so I’m stuck. As a result I only visit biannually. However, several weeks before one of my back molars had broken; it was no bother, but with the risk of Chemotherapy induced neutropenia, and potential subsequent abscess and sepsis, a visit was required. I had the tooth pulled (saves a lot of bother later) and the rest cleaned and polished, leaving me £285 lighter, but reassured my smile was brighter.

Next, was Bucket List item no. 2. The Children wanted a tattoo unique for our family, designed by me. I was not at all sure what to do, or where to go for inspiration. Luckily I did a night shift with the lovely Aylisha, who had lost her sister just a few years before. We discussed family tattoos; she’d got one in remembrance. I explained that we all wanted to get the same design. She showed me several Ambigrams, of which I had never heard. They are designed to read as two separate words, within one, depending which way you read them. I then spent several days scribbling away until I had a design we were all happy with.

So the deed was done. I went to Woody’s Tattoo Studio in Wycombe on the Thursday, following a morning dose of Immunotherapy. Again, the tattoo had to be done, so that it would be healed before Chemo commenced. 20 minutes, and I had our Bailey/Family tattooed on my left forearm.

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Two weeks later and the children followed up with theirs…

Almost before drawing breath, Friday arrived, and Bucket list no. 3. A pub crawl around the 9 remaining pubs of Thame. Several weeks before I had put an event post on Facebook, inviting friends and family to join us, but expecting that there would be just a handful of us. Why a pub crawl? To be honest I’m not really sure, other than the fact that I haven’t done one for at least 30 years, so why not? 

My Brother Mike arrived , having flown in from Delhi for a long weekend; accompanied by his son Oriol, having arrived from studying in Bologna. Both unannounced, and a wonderful surprise. They were joined by my sisters Fi and Sally, from Macclesfield and Bristol. Our house became a wonderful chaos of hugs and chatter, tears and laughter.

All started gently enough in the Falcon, an old railway inn, opposite the old Police Station. Quietly disturbed as our group grew from a handful to about 20.

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Campaign and Dance friends were joined by those of Abbie, Hattie and Jacob. Half an hour and we strolled to the Cross Keys. A beautiful hostelry on the corners of East and Park Streets, which has a microbrewery behind. Small, but warm. Our numbers grew to about 40. The boys were already enjoying themselves, having to down drinks in quick order. I however, remained sober throughout, under strict instructions from the Specialist Nurse that I was not to drink ‘much’ (I had a pint in the first pub, and a whiskey in the last).

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It was at times like herding cats, but my leadership was, of course, impeccable and impossible to ignore. Half an hour in each pub was what I had allotted if we were to be successful.

On to the Swan, a pub and hotel, unfortunately in reduced circumstances, but warm and friendly. We began to fill and empty every tavern as we moved like Ethanol locusts, leaving the regulars wondering what had just occurred.

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Then across the road to a taproom which I have never frequented; The Old Nags Head, a pub not patronised by many, it turned out. One old man asked when the door was going to shut, we just kept coming. No card reader and the barmaid looked at us in horror, unable to move until her friend agreed to help her out behind the bar. Plenty of room for us here.

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Down to the Birdcage and things were beginning to get messy at hostelry no.5, and the chatter and laughter increased in volume. We were joined by more local friends; it was a heady mix of youth, age and experience. Former teachers and pupils slurring vocabulary and telling of mis remembered adventures…

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Crossing the High Street, we entered the James Figg. Named after an C18th pugilist, and home to the First Thursday Music Club. It has a pig on the roof, and a Moose Head above the fire called Eric; enough said. It was here that a serious felony took place; all Christmas hats disappeared from their designated residence, appearing on the heads of our half cut fellowship (for this is what we had become). Josh and Lee the outlaws responsible. Here is the evidence…

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At this point it all became a lot looser and the group began to drift apart, my commands falling on inattentive, easily distracted, ears. I gave up the shepherding of felines, and the core group moved down to the Rising Sun before the Rozzers arrived.

The ‘Riser’ is famous for its Thai menu and pub quizzes. Things became so dysfunctional, the obligatory selfie was now impossible.

On to The Thatch, a really wonderful pub and restaurant, notorious for being trashed by David Cameron and Boris Johnson’s Bullingdon Bully Boys, back in the 80’s, under it’s pre nom Thatchers.

Time was moving on and we’d fallen significantly behind schedule. Jacob and I decided to see if the last pub, the Six Bells, was serving. It was after 11pm. We got there to discover we were 2 minutes before Time. We got the drinks in and took a couple of sips, before congratulating ourselves on being the only ‘crawlers’ to complete our task, and leaving to rejoin the others.

Our group was reduced to about 12; the outlaws were busy stripping the pub of Christmas decorations, with which they adorned themselves and any one passing. We retired to the world famous Atalay Kebab Van, where farewells were said at 0130am.It turned out to be pretty legendary, and not to be forgotten, or repeated…

On Saturday, Mum and Dad came down by train and we all travelled to visit Abbie and Lee’s new house; then to go and visit Ann, Bill, Mum’s Brother, and Steve. A lovely afternoon.

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Mike and Oriol returned home on Monday, and our house went from a noisy, clattering, hive of warmth, back to it’s whispering normalness.

Thursday I went in for my fourth Gastroscopy. I had been finding swallowing more difficult for the previous week, and was finding even liquids difficult at times. At work I hadn’t managed to take a mouthful of food without it immediately getting stuck, resulting in me spending my break with my head over the porcelain.

The Gastroscopy result was better than I could have hoped. The Oesophagus and Duodenum were clear. No spread…

For those who remember, I had a date. It had taken a while to organise, but we met on Friday, and I had a lovely day getting to know someone very adorable. We’re meeting again very soon.

Saturday came round again, and I was visited by Maria and Danielle, my militant Nurse friends from London; famous for NHS campaigning and being vocal, strong, intelligent women. Unfortunately I was not feeling at my best, and after going for a meal I literally had one mouthful of soup before having to get to the bathroom. But these girls are a tonic (of the Gin kind) and lifted my spirits (see that?) enormously; both patient and caring.

It snowed heavily overnight and we woke up to find the coach they’d planned to catch home, cancelled. We went into town for Brunch with Hattie and Louis, and then met Jacob walking Murphy. All of Thame was out, building snowmen or trying to sledge down ridiculously slight inclines, especially the Dads. The girls eventually went home by train, once the roads had cleared enough to get them to station. I then went onto my first of 3 night shifts, working in Children’s A&E.

Work have been magnificent. Since my original blog about my diagnosis I haven’t had to go into any long explanations, but have received lots of kindness and many, many hugs. The Senior team have supported me in any way I’ve required, sometimes at short notice; this has made a massive difference, and meant I haven’t had to worry about my job. My last night was my last shift, for a while at least. I booked a week of sickness to follow the first session of Chemo, to allow time to adjust to any side effects. This is followed by a week off for Christmas, then a return to Occupation Health, to determine how, and when, I get back to work.

There was the obligatory selfie, before my goodbye…

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Wednesday afternoon, and Sarah and Trevor arrived from Grantham. I met Sarah about a year ago, on the Victoria Derbyshire programme, debating the NHS. A great friendship was formed and Fighting 4 Life Lincolnshire have joined us in Oxford, and London, fighting the defunding and privatisation of #ournhs, locally and nationally. Another afternoon of love and laughter.

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And so to finish. Thursday was C Day, and I was very apprehensive. This is the medical equivalent of my skydive. Pumping Cytotoxic chemicals into my veins, and the potential side effects, is something I have had to come to terms with. I have no choice. I have to trust science and my medical and nursing team, in the same way I did my instructor. Jumping out, not knowing what the result will be.

Hattie took us into the EPCTU FOR 0830h. Bloods were taken, and the usual weight and urinalysis. I’d lost another 2.7kg. A starter of Immunotherapy was administered…

I was given a pre med of Dexamethasone (steroid) and Ondansetron (anti sickness).

Would I tolerate the intravenous Oxaliplatin? It’s a drug given over 2 hours. The side effects include Laryngeal spasm, when cold air causes an inability to swallow, stomach pain and dizziness. Longer term side effects include Neutropenia (knocking out the immune system), reduce platelets (increasing risk of bleeding) and anaemia (low red cells). It also causes peripheral neuropathy (leading to painful, numb fingers and toes) making it difficult to do fine tasks; this is usually temporary, and triggered by cold. It will be given every 3 weeks.

I’ve only had one of these side effects thus far, the peripheral neuropathy. Even with gloves on, my fingers burn and become useless outside in the cold; I get a similar sensation in my mouth drinking anything cold, but These sensations go once warm again, and 2 days in, I feel I have got off lightly. So far, so good. The only other issue was that toward the end of the infusion my arm became tight and painful, and when touched felt like Rice Krispies, going Snap, Crackle and Pop! Though still tender, this pain is resolving.

Following this I was given TTO’s and a complicated medication regime of oral Ondansetron, Metaclopramide (another anti sickness tablet) and Dexamethasone. These are only given for the first 2-3 days, but I was also dispensed Capecitabine, a tablet form of Chemotherapy 1150mg twice a day. Not to be handled, and to be swallowed with water from a glass kept separate from those used by the family.

The potential side effects are the same as for Oxaliplatin, but with added hair loss, including eyelashes (usually after second cycle), headaches, sore eyes, and cardiac problems – cardiac failure, DVT and myocardial infarction.

I’m still in free fall, eyes wide open…

 

 

 

 

 

Extreme Podiatry

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This weekend, Oxfordshire Refugee Solidarity took 32 volunteers to Calais and Dunkirk to work with organisations caring for Refugees and Migrants in and around Northern France. The volunteers had spent the previous 2 months collecting aid, including approximately 300 children’s rucksacks, filled with crayons, paper, books, bubbles, hats, gloves and scarves. Most were collected by schools, replacing shoeboxes traditionally collected at this time of year, and many had personal messages from the schoolchildren tucked inside. This aid was enough to completely fill a very large transit van.

We travelled down on Friday evening, via Eurotunnel, staying overnight in the local Youth Hostel which is excellent – if basic- and provides a free, all you can eat, breakfast. Our group includes a variety of experience, abilities, ages, and backgrounds. Inexplicably, it also includes an inordinately large percentage of Vegans. The big difference to this trip was that it will be my last, for the time being. I start Chemotherapy on December 14th, and will not be able to participate again until my immune system has recovered, and will be dependant on side effects and future health. This fact precipitated  my sister, Sally, and 3 children, Abbie, Hattie and Jacob to join our venture. One minibus came with volunteers from Thame, the second with those from Didcot and Oxford.

On Saturday morning we split into 2 groups, with half going to work with the Refugee Community Kitchen, which provides approximately 2700 hot meals a day in and around Calais and Dunkirk. Our group went to work with Clare Mosley and her team at Care4Calais. The situation on the ground changes on an almost daily basis, and though these organisations try to plan food and aid distributions, these often have to be reactive. After offloading our aid into the warehouse, Clare gave us the daily briefing. Today Help Refugees, Utopia 56 and C4C would be working together to distribute new walking boots and socks to every migrant on a single day; something that had never been done before, and which would be logistically challenging. Alongside this we would be working alongside FAST (First Aid Support Team), a group of  6 healthcare professionals from London, who would be inspecting and treating feet before the new boots were worn. We could expect to see bacterial and fungal infections, ulcers, wounds and possibly conditions like Trench Foot, because of sodden, inadequate footwear. The medics would need a volunteer to work alongside each of them, washing feet. Several of us proffered our help. The remaining volunteers would be involvein the boot distribution, which would also include taking  mobile phones and battery boosters for any migrants that already had decent walking boots. We would also make up some cake parcels from donations made the day before, and would be giving everyone a can of Coke.

The morning was taken up getting vehicles loaded and collecting and preparing items for distribution. Sally went off into Calais with my girls to collect and prepare lunch.

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After eating very well, we split into our teams, which were covering 3 separate sites. Our team went across Calais to an area just to the side a roundabout. A large group of about 40 Eritrean young men and a few Afghan boys had gathered. We drew up our vehicles, and set up a tarpaulin, bench and medical kit at one end. We filled 2 flat bottomed containers with water, adding detergent to one and Dettol to the other.

After the young men received their new boots, they wandered over out of curiosity. We explained, verbally and using our hands, what we wanted to do. Those that spoke English then explained to the others. We soon had a makeshift conveyor belt of clients. The boys would remove their rotten, decaying trainers and sodden socks, then sit in the camping chair we’d set up next to the bench. One of the medics, Simon, would then inspect their feet, especially between the toes; explaining what he found, deciding if I could then wash them in the tray, or if they needed their foot wash separately, if it was something that might be easily passed on to others. I would then greet the smiling client, get them to sit on the bench and wash their feet, especially their toes. Whilst I was in the process I would then ask them questions such as ‘where have you travelled from?’, ‘where are you hoping to travel to?’ and ‘do you have family in the UK?’, or some other small talk. I would then hand them on to Dorothy, who would soak their feet in disinfectant, then hand them on to Vicky, who would dry their feet. A second medic, Tariq, would apply an appropriate, spray/ointment/dressing as required. Talc would be liberally applied, and socks and boots pulled on.

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This task, this washing of feet, should be a simple and straightforward one for a nurse. I cannot think of how many patient’s feet I have scrubbed over 35 years. But this was very different; I was on my knees, literally at the feet of people who are treated, by our Government, like insects, cockroaches and described as a ‘swarm’. Their lives have no value to many, yet here we were, doing something essential, yet so symbolic and intimate. Doing something to remind them of their humanity and dignity. It was quite an emotional experience.

However, as often happens we were quickly reminded of the reality and danger that is always present, bubbling just under the surface. The atmosphere changed in a second; in an instant a fight broke out between the Afghanis, then it was 2 fights, with several young men chasing, punching and kicking. Then we saw a knife, a long 12 inch Chef’s knife; flashing in the weak sunlight as a man charged after another, weaving in and out of volunteers and other migrants. Men intervened and just as quickly as it started, it was over. The men involved left, passing the knife between them. There was a man on the ground; we discovered he’d been pepper sprayed. The medics were attending him.

At no point did I feel vulnerable. I was angry, but this dissipated and we carried on. Our clientele started drifting away. We discovered that there were a good proportion of boys who were not prepared to swap their trainers for new, dry boots. The trainers were better for running from the Police.

The CRS are paid by us, as British Taxpayers, to maintain the border on this side of the Channel. To harass, dehumanise and humiliate men, women and children on a daily basis. To mentally and physically break their morale, to pepper spray and teargas their belongings, sleeping bags and food so that it is inedible, and unusable. To confiscate any personal belongings, and destroy any shelter. We treat our animals more humanely. 

On Sunday, we decided to take all 32 volunteers to work with Care4Calais; to distribute the children’s rucksacks in Dunkirk, where we knew there to be families. Again, the morning was spent preparing food packages, and sorting aid. After lunch we loaded the vans with a generator and phone charger board, plus the rucksacks, footballs, frisbee and other toys.

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I drove the van to Dunkirk with our Care4Calais group leader Isis, who told us she was from Chile. She and her mother had left when she was 5, moving first to Ecuador, then to Spain. She remembered being dragged across the city to various lawyers and solicitors, whilst they applied for Asylum. Once they got their passports they moved on to London. She would be working in France for the next year, 6 days a week. She wasn’t sure what she would do after that, but that it would be something helping refugees and migrants, like herself.

When we got to our destination, we were informed by Isis, that the families were not where they had been on our previous visit. Less than 24 hours after we had left the site in September, the CRS had moved in, destroyed the camp, rounded everyone up, and taken them away to deportation centres in buses. Since then the families that had escaped detection, or had arrived subsequently, had moved further into the scrubland, and become more disparate. This meant, that once parked, we had to walk a lot further to find any encampment. We met lots of men walking around the parkland, but no women or children; after visiting our third empty shelter, we were told that the families had been taken to a hotel for the night, paid for by a local charity; but that they would be returning soon.

We’d left some of the food parcels in the empty tents, and were about to give up waiting, when we started seeing women and children walking toward us with suitcases. When the first reached us they confirmed that because the previous night had been so cold they had been taken to stay in a hotel. Even though we were all feeling very cold, despite our winter coats, gloves, hats and scarves, these refugees were not so well clothed; they would have to spend tonight out in the open. We gave them food parcels, and took the children to the van to receive the donated rucksacks. 

Whilst most were taken with smiles, the children were also very particular about the style or type of backpack they wanted. This was to some more important than what was inside. In this they are no different to any other child; despite the desperate circumstances they find themselves in. We didn’t have much time to play with them, the parents were desperate to get them into shelter.

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We left once we had distributed all we could and the sun began to dip. On the journey home everyone talked about what they had experienced and what they would take back to family, friends and work colleagues. It does not take a hero to work here, it takes someone who refuses to walk by, someone who refuses to close their eyes to injustice. It changes you. It doesn’t make you feel good, it makes you feel worse; it makes you feel inadequate and very angry.

There is only one way to change the situation for refugees and migrants wanting to come to the UK, and that will be to change our Government for one which has an ethical foreign policy and an ethical policy on migration.

#ToriesOut #refugeeswelcome #openborders #closecampsfield

 

 

Three hats

 

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On Monday Hattie and I went to spend the day in Bristol with my sister Sally, and her family. It was a beautifully crisp, sunny day.

I had to pick up the NutriBullet I had previously forgotten, and maybe talk to her children, Dylan and Una about my diagnosis; both are still at Primary School. Sally and Steff were concerned about how best to do this, and how the children might react. 

Although Sally was clear that both of them wanted me to talk to the children, they needed reassurance. It’s a difficult one; I have always been clear, in regard to how I talk to my children, that I would always be honest, talking in a way which was open and uncomplicated. My children have already had to deal with far more than most; they have been carers, but they have also been loved, and had security. All have become wonderfully strong, articulate and confident, whilst also remaining fragile.

We discussed the fact that most of us take a while to process information, especially bad news, with questions coming hours, and often days later.

In the afternoon, we picked the children up from school and took them into town to buy a hat. I’d decided that if I was going to lose all my hair, including eyelashes, I wanted to wear a hat, to keep my head warm, and to partially disguise my lack of facial coiffure. We had great fun trying on a variety of rather mad accoutrement. In the end I chose 3, which I could vary according to mood and occasion.

We talked after supper. I explained in a very similar way I had with my mum, my symptoms and investigations. I told them the diagnosis, and treatment; especially that I would be losing my hair and beard; that I would probably be feeling quite ill for a while. I would look different. Una told us she had a girl in her school who had no hair, because she has cancer.

Talking honestly and openly is the only way to deal with this. More than three decades of Nursing has taught me this. Watching how my patients deal with bowel, pancreatic or oral cancer working with Palliative Care teams; being at the bedside of patients whilst they die; witnessing  the variety of death, I am always humbled and inspired by the way many with terminal illness, or life changing surgery deal with it. Assisting patients to have a ‘good death’, in the presence of their family, has always been something that has given me great professional satisfaction.

A couple of days later, whilst on a dog walk with his mum, Dylan told her he had been sad at school, thinking about me, and was she sad too? Sally said yes, she was. That she had spoken to his teacher, who was happy for Dylan to visit anytime he felt down, to talk. He had lost his father when he was 13.

At school, Sally was discussing my skydive with another mother, when Una piped up loudly, ‘ and he’s doing it with cancer!’

Number one of my bucket list, the skydive, was due to take place on Wednesday. As the day drew nearer my fear manifested in two relatively sleepless nights; my mind going into overdrive. I envisioned every conceivable thing that could happen, from being so scared I vomited in mid dive, hitting the instructor full in the face, to refusing to jump and clinging to the plane like a limpet. I couldn’t think rationally and couldn’t switch off. During the day I was walking around with that dread you feel in the pit of your stomach when you’ve been sent to see the Headmaster, or about to speak in front of an auditorium full of anonymous faces.

On the day I felt calm, only slight apprehension. The sky was grey, with ominous low cloud. I called the Skydive centre; I was told the poor visibility meant that jumping was unlikely, but that I could postpone… The thought of delaying the jump was not an option, so we decided to get ourselves over to the airfield, hoping the weather would improve.

Jacob, Abbie and I arrived at Hinton Aerodrome to be told the chances had improved and the dive would probably got ahead, though a bit later than scheduled. The forms were signed and we had a short training session. 

We changed into our flight gear and waited…

The dark clouds dissipated, and lifted. We walked to the plane. There were 3 of us jumping in tandem, 2 taking video and another 6 jumping solo. The plane took off, slowly climbing to 13,000 ft, way above the clouds into bright sunshine and blue skies. Could I do this? I still felt OK. The amber light came on; the plane’s door was folded back, and the first 2 to jump prepared. The green light came on; they jumped out. Matt, my instructor and I sat on the floor and he turned us 90 degrees, also pushing me forward, until I was on the outside of the plane, hanging with my feet tucked back under it. He pushed us off…

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It was fantastic… all the way down. There was no stomach flip, no nausea and no fear; just absolute joy.

Thursday morning found Abbie and I back in the Early Phase Clinical Trials Unit (EPCTU), at the Churchill Hospital, at 0830h. Vital signs, weight, urinalysis and bloods were taken; I was cannulated.  We then waited an hour (this is not a moan, just a fact). A doctor wandered in and sat down on the bed beside me. He checked through my notes, and went through diagnosis and consent for trial with me; there was no eye contact, and he seemed uninterested and distracted. He left. We waited a further 3 hours; we’d been warned the day would be long, because we had to wait for blood results. Abbie and I completed a crossword and I read her a few chapters of  ‘This is going to hurt’ by Adam Kay. Abbie lay on the bed. It was like going back 20 years, to her bedroom, with me reading her ‘The Philosophers Stone’.

After lunch the Specialist Nurses bustled in with the first of the Immunotherapy drugs prepared and run through, hanging from a drip stand. I was connected; it would take an hour to transfuse.

Nivolumab activates T cells within the immune system, allowing them to attack and kill cancer cells by blocking PD-1, which cancer cells use to avoid detection. It ‘switches off’ T cells. It is used on advanced cancers. It is not approved by NICE currently as it exceeds their limit of £30,000 per year of quality life limit; it costs £75,000 pyoql.

The transfusion finished without any side effects. There needed to be an hour gap before the second drug could be transfused. I snoozed between my vital sign checks…

The next infusion was commenced.

Tremelimumab binds to the protein CTLA-4, which is expressed on the surface of T Lymphocytes by cancer cells, ‘releasing the brakes’ and allowing T Cell activation. It is used for metastatic tumours.

Studies so far show these drugs combined having a 23% positive response. Good, but nothing to get too hung up on…

(https://www.astrazeneca.com/media-centre/medical-releases/astrazenecas-combination-of-durvalumab-with-tremelimumab-shows-clinical-activity-in-non-small-cell-lung-cancer-irrespective-of-pd-l1-status-cancer-0120160.html)

This infusion was also completed without event and we left, after thank you’s and goodbyes.

I’m not supposed to get even a little bit tipsy, so there goes the Pub Crawl we had planned…

Some lovely news is that My brother Mike, and possibly his son Oriol who is currently studying in Bologna, is flying home for a long weekend at the beginning of December. Oh, and I’ve been asked out on a date Unknown-1  x

In case you might be wondering how I am day to day, I’m pretty good. I feel well. What I can eat varies meal to meal, and it doesn’t seem to matter what it is. I can sometimes eat a normal meal, though half the size of that which I would previously; on occasions I can be eating soup and get it ‘stuck’, causing nausea and bloating. I am more flatulent than usual, and constipated, which was never an issue before.

I am losing an average of 3kg per week.

 

 

 

Jumping out of a plane

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I’m awake. When I look my watch it’s 1am. I try to turn over, but my mind won’t switch off. Suddenly it’s full of thoughts; the main one being a realisation of what I have done. I booked a parachute jump for Jacob and I two days ago. Did I think it through? No…

It was on our Bucket List, and it needs to be done first, before I start therapy, before I get ill. So I booked it on line, just like that. Let me tell you now, my biggest fear is heights. I have walked away from Theme Park rides several times, usually when the queue has been long and I’ve had too much time to think about what I was about to do.

When I was very young, I will never forget my Mum and Dad taking us to London, and taking us to St Paul’s Cathedral. For some bizarre reason my parents decided it was a great idea to take 4 reasonably small children up to the top of the dome and out onto the roof. To get there you have to climb several hundred steps, the worst thing from my point of view, was that nearer the top these were metal with gaps in, and you could see through, right to the bottom. I made it, much of it crawling; I’ll never forget the fear.

So the thought of jumping out of a plane, even strapped to a very experienced instructor, is enough, if I think about it too much, to bring me out in a cold sweat… as could dying.

It’s all so known, but not experienced. I have never really ever been ill, well except for very brittle asthma as a child, but Ventolin pretty much sorted that out. I haven’t had an Asthma ‘attack’ since the age of 23, but I have been close to death on two occasions as a child.

The first was when I was about six. Dad had taken my brother Mike and I to the local Lido, in Birmingham somewhere. I couldn’t do any more than doggy paddle, and that badly. But as I sat on the side at the shallow end, I watched the older boys running up and throwing themselves down a slide into the water. It was too much fun to pass up, so of course, without thinking, I did the same, shooting into the water with a squeal of delight… Which turned into a watery cry as I realised I was out of my depth, surrounded by noise and bodies. For what seemed eternity I went up and down in the water, swallowing it with every breath, choking… and panic beginning to rise. But there was something else going on. I could see my body on the bottom of the pool; a big plug had been pulled out to drain it of water, and there was my body, with people stood over me. I was calm. I could see the newspaper headline… at least that is my, probably very embellished, memory of the event. It ended, probably within seconds, with me grabbing on to a boy nearby, no doubt nearly strangling him, who then delivered me to the side. No one had even noticed I was missing…

The second was when I was 15. We went on holiday to Iona, a beautiful, tiny island off Mull. We’d gone with another family, the Bakers, including Simon, who is still one of my best friends today. We’d rented a house, this house…

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Iona, from Fionnphort

It had been empty for many months and the Mums spent half a day shaking off dust sheets and cleaning (it was the mid 70s). The weather was sunny, but blustery and we spent the first 2 or 3 days wandering the Island and it’s beaches. Pretty quickly my chest started to tighten. The Ventolin inhaler I had with me was ineffective and I was quickly limited to very short distances within, and outside the house. I spent long nights sat on the side of my bed, sweaty and wheezy; struggling to breathe. The days were little better. My inhaler ran out and I was taken to see a GP on Mull. Not an easy trip since, in those days, the ferry on and off was a tiny fishing boat that got thrown around on the waves.

The GP listened to my chest and prescribed some more inhalers. He may have done more, but I don’t remember. I just remember the next couple days and nights being very difficult. I was deteriorating, and semi comatose (my blood gases would have been interesting). I was bundled onto the ferry late one night, to be met by an ambulance at the port and blue lighted across Mull to another, bigger, car ferry, and on to the hospital in Oban. I recovered over the next week, but that was the end of that holiday for me.

Today it was confirmed that I met the criteria to begin the Immuno/Chemotherapy trial, starting next Thursday. This is the best news I could hope for, but I don’t want to assume anything. I’m still working on a, now, 11 month prognosis. I’m not worried by the Immunotherapy, there are no real side effects, and hopefully it will do some good. Chemotherapy on the other hand is something else. The side effects range from mild and temporary, to extreme and permanent. It is toxic, but what is the alternative? A guaranteed shorter prognosis, and though the side effects may be unpleasant I have shit to sort out before I go. I have to give the children as long as I can to get used to the idea of losing me, and build as many good memories as I can, because I’ll be a long time gone. I have to trust science and the Oncologists in the same way I will have to trust the parachute and the instructor I’m jumping with.

So back to, what is now 3.27am. I can’t promise there won’t be times of fear ahead, but there’s no choice. I’m buckled in and heading relentlessly forward, on the scariest ride of my life. I have to try to face it with my eyes open, screaming my lungs out, whilst also smiling at the thrill.

N.B The photo at the top is of my son, Jacob, and his friends from Urban Strides, performing at Sheffield arena, in front of about 12,000 people. That’s courage; that’s terrifying…

Breaking Bad News to…

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…my parents and close family. Mum and Dad live up in Bollington, near my sister Fi, who is in Macclesfield. They are both frail. My Dad, despite being an active cyclist into his late 60s, had to give it up due to deteriorating eyesight and has become physically fragile. He was a teacher for much of his career; teaching very ethnically diverse, very poor children in an inner city primary school in Birmingham, then lecturing student teachers training at Oxford Poly. Mum, has Alzheimers’. She trained at Guy’s Hospital, and was a Neonatal Nurse, then Health Visitor, in Birmingham and Chalgrove.

I speak to them both, by phone, almost daily, and as my investigations progressed I kept Dad up to speed; though initially I didn’t intend telling him about the metastases or prognosis, or Mum anything until I could be with them, doing it face to face. Talking to both sisters we worked out a date when we could all meet up and be together as I told Mum. The plan was to stay overnight and be around for them both. A bonfire and fireworks party was planned for the evening.

I discussed this with Dad, who was concerned about how Mum would take the news, and the fallout once I left. I explained that Mum had to have the opportunity to hear about my cancer and treatment, that as my Mum, she had a right to get upset, and that we would be there with her, to talk and comfort her.

Before this I had decided to write something to put out on Facebook to let friends and work colleagues know what was happening, which I would wait to post until after I had spoken to the remainder of the extended family.

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I called my Auntie Ann and arranged to see her, and my Uncle Bill. 

I arrived to find Ann making sandwiches in the Kitchen. I joined her, and when she asked how I was, I explained; we had a lovely hug, and we went on to talk for a long time, whilst the tuna sandwiches began to curl. I asked if she would talk to Bill, my cousins, and their families, over the weekend; I have sometimes felt exhausted with talking about me and this bloody diagnosis.

We then went into the lounge where Bill was sat, in his chair, by the window, reading his paper. Like my Mum, Bill has Alzheimers’, but had also suffered a stroke, which has affected his mobility. He was on good form though, and we had a lovely long chat about how everyone in the family are doing. I love Ann and Bill and my cousins Steve, Mark and Jenny, and their families. When we were young we spent a lot of time at weekends sleeping over; Bill would take us on local archeological hunts. The strange, ancient bottles on the window sills of their conservatory were often the treasures we dug up. We were , and are, very close.

So Sunday came; I woke very early. I sat at the computer, with a cup of coffee, doing a final edit on my Blog post. I thought I would save it, but managed to accidentally publish it, a day earlier than I’d planned. It appeared on Facebook and Twitter and was read, before I realised. Oh well, not to worry… It turned out I had an early appointment with the Research Nurse at the Churchill on Monday, so an overnight stay, with Mum and Dad, was not going to be possible. Jacob and I drove up in the van, the day was windy and cold, but lit with beautiful sunshine.

We went to Fi’s house first, collecting her and her family, and sister Sally. We had some wonderful hugs, and a quick catch up. It was the first time we had met to discuss everything face to face. We missed having Mike there with us. He’s living in Delhi.

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When we got to Mum and Dad’s, Mum had put out 4 cakes. We had coffee/Tea, then everyone took Mum off for a walk so I could talk to Dad. We talked for an hour. Dad and Mum have always been there when I’ve needed support, during and after my divorce and later my redundancy, but also for the smaller issues that crop up in life. I have never not felt loved by them (except for a short period during my teenage rebellious period, and that was me, not them). That’s the hard bit, that they are still supporting me, when at this stage of our lives, it should be the other way around…

We agreed that I would talk to Mum on the walkers return, but I also explained that I would like to include Dan and Carrie, my nephew and niece, in the conversation. I would discuss that with Fi and Rich beforehand. I did, They were happy with that.

So I sat next to Mum, as the others came in and joined us in the lounge. I started by stating that I’d been having trouble swallowing, the investigations, what was diagnosed and the treatment options. I finished by explaining that currently the prognosis is poor, but not putting the time to this. During the whole conversation I was watching Mum and the children and though there were a few tears, they were ok. Mum amazed me, any concern I had at how she might react vanished as she became Nurse Bailey, and Mum again, stroking my shoulder and back as I talked; at the end she told me not to worry, they would look after me; she would care for me, just as she had when I was a boy having yet another Asthma attack. I asked the children if they had any questions; they didn’t. We all had more hugs. 

I’d asked Fi to take some photos of me whilst I was there. I wanted some nice pictures before I start treatment or get ill. We had some fun whilst doing that. Sally also said she now wanted me to talk to her two children, in the same way I’d spoken to Dan and Carrie. A lovely compliment on how I’d broken bad news. I’ve done it many, many times professionally, but it’s very different when it’s personal.

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Dad was very tired, but the of rest us went back to Fi’s for the fireworks, and the giant sparklers.

The following morning Hattie took me in to hospital to discuss the Clinical Trial I have been put forward for. It was an early start. I was consented, then had bloods taken (13 large vials!), my vital signs, weight and height, and an ECG. This would all be sent off to the drug company who will check if anything falls outside the parameters they set for the trial. I find out if I can start Immunotherapy on Friday. It will be 2 intravenous drugs every Thursday for 4 weeks, then a combination of Immuno and Chemotherapy in 3 week cycles for 18 weeks. Chemo over Christmas.

We then had to wait a few hours for a CT scan. I had a lovely time wandering the corridors meeting staff I’d employed years before, some as newly qualified nurses, who are now Sisters, Matrons and Specialist Nurses. When the scan came I had to drink a litre of water, then lie on the table with my jeans round my ankles. There was a hold up. I’d only had a scan 3 weeks previously and the radiographer wanted to check if a further dose of radiation was really required. After about 10 minutes of discussion with the research team I was told the scan was cancelled.

Luckily, I decided to visit the Research Nurse before going, to check that the repeat Gastroscopy I’m booked in for on Thursday was still necessary. I didn’t fancy starving for 6 hours to be told that it was also cancelled. The nurse appeared sometime later to explain that actually, I did need the scan; could I return to the department?

A few minutes later I was back on the table, with my trousers round my ankles, receiving IV contrast.

I’ve finally caught up with the reaction to my original blog. Everyone has been very generous and the messages of support and love are humbling.

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The Gastroscopy with biopsies is next.

P.S Ensure is a drink concocted by someone with a bastard sense of humour…