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… 

 

 

Breaking Bad News

It began with me downing 2 large glasses of orange juice upon returning home after a long day. I immediately felt bloated and had epigastric discomfort. Nausea began to rise and I had to run to the loo, where I retched for several minutes, only bringing up orange phlegm. Over the next few weeks the same thing happened after random meals, sometimes having only taken a couple of bites. I sometimes found it difficult to swallow.

I went to see my  GP, Kara, and a Gastroscopy was requested. It wasn’t as bad as I had expected and I started with just the throat spray. I swallowed the endoscope easily, but it touched the back of my throat and I began retching; despite my best efforts I couldn’t stop, which meant the procedure had to be halted. I was sedated and don’t remember anything until I woke up in recovery. The gastroenterologist told me he had found an area that was abnormal, irregular, and bleeding. He had taken biopsies, but that if the result came back negative, I would need the procedure to be repeated. That said it all really; right there I knew. I would also need a CT scan.

I called my GP’s secretary a few days later. They had the result, it was negative. I would need a second Gastroscopy. She gave me the number for the Gastroenterology Department Secretary, so that I could call and chase. 

I had the CT scan the day after I called. It was in a deserted Radiology department at 1930h. The Radiologist could not have been nicer; I was cannulated for the radio opaque contrast and asked to swallow a lemon flavoured powder, which would make my stomach swell. It was completed in a few minutes; the result would be written by a Consultant Radiologist within a few days. It was Thursday, maybe by Tuesday.

On Monday I called the Gastro Secretary; The result was back. I would need to see a Consultant Gastroenterologist the following morning.

Abbie, my eldest daughter, came with me to the appointment. The Consultant, told us that the scan showed an aggressive Cancer/Tumour extending the length of the Fundus and around the Gastro Oesophageal Junction…

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This I kind of expected, but the ‘FUCK ME’ moment was as she went on to tell us there were multiple Liver Metastases and a peritoneal nodule. This meant that surgery would not be appropriate and treatment would be Palliative…

Silence… and a deep breath. Abbie and I hug; there are tears.

The Doctor talks on… The Lungs, Pancreas, Kidneys and Bones are clear, and I have no ascites (fluid in the abdomen). I will be referred for a repeat Gastroscopy, for further biopsies, and to see an Oncologist.

Throughout this process I have been talking to my children, siblings, close friends and the senior Nurses at work. They have all been bloody fantastic. Work could not be more supportive (I love my job), but talking can be exhausting.

The Endoscopy goes ahead without a problem; I’m heavily sedated this time. I meet the Oncologist with all three children and a Nurse Specialist (who I know, having worked alongside her on Surgical wards for 9 years). The Chemotherapy regime and side effects are explained. The hair loss (including eyelashes,eyebrows and beard), nausea, diarrhoea, peripheral nerve pain/damage and we discuss the risks associated with a drop in my immune system. A loss of memory and concentration worries the children, because they already feel this is an issue 🙂

I ask about prognosis; we already know its not good, but I want to know if I can have some idea of time. I need to plan; I’ve been a single parent for the last 11 years, we live in rented accommodation and the children are still so young; Jacob is only 19 for fuck’s sake.

The answer is ‘ If the Chemo does its job, hopefully a year…’ –  ‘FUCK ME’ moment number two

another deep breath and a group hug…

I’m given a small forest in leaflets and booklets. I’ll be contacted by the Dietician. I get a form to send off for free prescriptions. We discuss how I can best continue to work for as long as possible. The Consultant has been trying to find out if she can get me onto an Immunotherapy clinical trial; one has just closed locally, but she’s going to talk to the Professor running it to see if I can be added. She will also talk to the Royal Marsden…

Immunotherapy is potentially fantastic. The drugs given boost your immune system to fight the cancer. It has minimal side effects, the only negative being that whilst you have the therapy the cancer can continue to grow and spread.

We leave. There are more tears, but we are together. A Year… Better get a crack on.

Over the next few days the children come up with the idea of a Bucket List and we talk about what we can put on it; a parachute jump, a unique family tattoo, finishing the conversion of my van into a camper and getting out in it, going to see a favourite Band, a big family holiday next summer, in Spain, at my Brother, Mike, and Montse’s place…

The sad things that hit me are that I will be a long time gone, that I won’t get to meet whomever Hattie and Jacob choose as partners, and I won’t get to be the worst/best Grandad. I won’t be there when the children need advice and support. But I’m lucky; I have been privileged. I have a loving family surrounding me; I have several other families – my political family, my work family, my dance family – wonderful friendships. I know how I’m going to die, not as I imagined, of a stroke in 20 years or so; I have time to say goodbye, and to have those conversations we should always have.

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Bringing you up to date.. I have been accepted onto a clinical trial involving a combination of Immunotherapy and Chemotherapy; I’m meeting the Research Nurse today for consent, a CT scan and bloods. I will begin 4 weeks of therapy soon after. Chemotherapy will begin in December.

I’m a Nurse, I’ve seen how fragile and random life can be, and I’ve seen death a thousand times. I haven’t had any ‘why me?’ moment, and I have no fear of death.

Why write this and put this ‘out there’? Simple, when I start to look like shit, am grumpy or short tempered, or not as active as I was, you’ll all know why, without me having to go into long, emotionally exhausting explanations.

I wasn’t sure if I’d be able to go to Calais with our group taking aid to refugees and migrants, but I now can. It’s going to be great. We’re taking 2 minibuses with 29 volunteers, and my van containing aid. My Sister Sally and Jacob are coming, and that is wonderful; it may be my last.

I will work, and campaign until I can’t.

Otherwise, I’m well. No pain, and blood pressure etc are really good. Neutrophils and CRP are slightly raised on bloods. I’ve lost weight, though I only know because I’ve noticed my motorbike jacket is looser.

I love a hug, so I’m up for lots of that, but please don’t say ‘sorry’, and don’t bring God or prayers into it. I’m a Socialist and Atheist, and I’m OK. Don’t pity me, I don’t do pity. I’ve had a bloody wonderful life so far; I really have no regrets, they’re a waste of time.

Finally, some advice, if I may:

  • smile more, laugh more
  • Love more
  • Do it today, don’t wait assuming you’ll have time tomorrow
  • NEVER VOTE TORY!

#KickouttheTories #refugeeswelcome #openborders #savetheNHS

Much love, me xxx

Celebrate and Demonstrate #ourNHS

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I thought the best way to celebrate the great institution that is the NHS would be to talk about it from a personal perspective. As a child I suffered from very bad asthma, and much of my childhood was affected by acute episodes, meaning that day to day life was constantly interrupted by long episodes of wheezing and an inability to do very much. I spent far to much time in GP consulting rooms, and Hospital beds. In the mid to late 60s and early 70s the medication seemed pretty ineffective, but I always felt safe. The NHS was there, in all its glory, though slightly tatty round the edges. Towards the end of the 1970s, when i was at the peak of my rebellious teenager stage, along came the Salbutamol inhaler, which changed my life. I could breathe… and prevent acute episodes in their tracks. I took full advantage…

When I was 16, the school I was at decided that this was a perfect age for volunteering, and against my will I was made to go and work in a local care home. I appeared to be the only kid who was. The home i was sent to smelt of stale cigarette smoke, cleaning products and wee. The thought of undressing anyone, washing  and toileting anyone else filled me with horror. I was a 16 year old boy in 1978!

2 weeks later I was offered a job at weekends, which paid a proper salary, not the 58 pence an hour I was paid at the superstore I hated. I worked there for the next 3 years, through 6th form and FE College retakes.

I was going to be an artist, a graphic designer; trouble was that by the time I’d finished my A Levels, I realised I had no talent. I was 19 and my career plan was down the pan. What to do? Take a year off, that what, and as well as travelling, it dawned on me that I enjoyed working, and caring for people, and I seemed to be pretty good at it. Plan B was to apply to be a Physiotherapist, Mental Health Nurse or General Nurse. The first 2 turned me down, but i was accepted for training at Stoke  Mandeville Hospital in June 1982 at the age of 20. I loved it, and still do, but male nurses were as rare as Jeremy Hunt at debates. I’d been told by my Mum that the only men who went into nursing were Queer or ‘unable to do anything else’. I didn’t care. Student Nurses in those days were part of the hospital workforce, working alongside more experienced students and maybe 1 or 2 Qualified staff. It was a very different world; most staff lived in accommodation on site and would meet for drinks in the social club after shifts. Being  a male amongst hundreds of young, mainly female staff had its advantages…

When I was training we were paid a salary, all be a poor one, which did not improve much on Qualification, and months salary usually only lasted 2 weeks of the month, but we got by, as a community. The ward Sister’s were Dragons who ruled their kingdoms with a sharp tongue and discipline. There was task allocation and ashtrays on patient lockers, home cooked food and an alcohol round on a Sunday. I loved it. I learnt all kinds of skills and nursing techniques, working in different environments, including Maternity, Mental Health and the Community teams.

To cut a long story short I Qualified after 3 years of training, and over the next 4 decades, worked in many different Hospitals, including 2 years in the USA, where I travelled extensively, enjoyed a salary 8 x that of the one I earned at home. But I hated the system over there, even then. I met a Welsh couple who’d lived over there for 30 years. They were uninsurable, and though in their 70s, working full time to pay for their medication after 5 MIs and Emphysema.

I worked my way up to Deputy Matron and Senior Nurse for Gastroenterology, Vascular and Emergency Surgery, surely the longest job title ever. I managed hundreds of staff in 3 different teams, and a budget of over £2m. I have worked with fantastic teams, who have worked often in very difficult and challenging circumstances, short of resources and staff, whilst maintaining professionalism and patient safety, and delivering it with a smile. I have met patients and relatives who have inspired me and shamed me, who have shown me again and again how precious life is, and how vital our NHS is. Being able to come to work and do a great job, one that often changes lives, and even sees them end, without having to, at any point, ask for payment, makes working for the NHS unique, and the relationship between staff and our patients a partnership. Any introduction of payment anywhere will destroy that contract.

Nursing has evolved and adapted. It is not the same profession I started 35 years ago. It is better. We are Specialists who teach, treat and prescribe. We have Degrees and Masters. We are Consultants and Nurse Practitioners. We are researchers and Professors.

After many years leading and managing I was made redundant 5 years ago. I was devastated, and relieved. It probably saved my life. The constant stress and the leaking of work into family life was becoming unbearable. So I decided to do something I’d always wanted to see if I could. I became a nurse in A&E. 5 Years later I’m still there, loving it.

2 years ago I got involved in the Bursary or Bust campaign, then the Junior Doctors dispute. I became an activist.

I fight with colleagues and other campaigners the Tory cuts to public services, the defunding of our NHS, and the Sustainability and Transformation Plans that will see the NHS just become a logo on Hunt’s lapel, and Richard Branson’s corporate health centres.

I will continue to fight the loss of the Bursary and free education for NHS staff which has seen a fall of 23% in applications to University, and the loss of our post education budget to pay for Nurse Associates and Apprenticeships that will see our profession become poorly educated cheap(er) labour.

I will fight the pay cap which has seen public sector workers, including Nurses lose 14% in salary leading to 40,000 nursing vacancies nationally, low morale, and staff resorting to payday loans and food banks to survive.

I will fight this Tory Government which tells Nurses ‘There is no magic money tree!’, whilst it is able to bung £1.5bn to the DUP to prop up a weak and wobbly, corrupt Government.

Save our NHS! Tories Out Now!

 

Post Jungle Fever

Post Jungle Fever

November 19th

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Lord Alf Dubbs – SUTR Conference 8th October 2016

Background

Saturday was my third trip to Calais, but this was unlike the others, this was 3 weeks after the destruction of the ‘Jungle’ refugee camp, which had been situated on a contaminated former landfill site, near the Eurotunnel and Ferry Port.
From unofficial surveys, done before 24th October this year, it was estimated that there were 9-10,000 refugees and migrants in the camp, some 1500 of whom were children between the ages of 8 and 16; many unaccompanied by adults.
There had been a great effort made by Lord Dubbs, having sponsored an amendment to the Tories’ Immigration Act 2016, to have all unaccompanied children, and those with family ties in the UK identified, rescued and brought to safety. Demonstrations were held locally and Stand Up to Racism (SUTR) held a National Conference to debate and demand action from the Home Secretary, Amber Rudd MP. Despite the imminent danger to these children the British Govt has only managed to process and rescue 70 thus far. Once the demolition of the camp began on October 24th somewhere between 120 – 400 children disappeared.

Let them in – Rally Oxford 14th October 2016

Over 3 days the French Compagnies Républicaines de Sécurité (CRS – formed post WW2, originally most were former Communist/Socialist partisans; they were purged after a strike in 1948), who now have a reputation for brutality and racism, removed refugees and migrants from the camp on buses, demolishing, then burning the fragile shelters; bulldozing the remains. The CRS were responsible for the daily, casual lobbing of teargas grenades into the camp, and had often abducted men or boys, taking them to an isolated area where they would be relentlessly beaten by Facists dressed in black. It is worth reminding ourselves that refugees and migrants are not criminals, but people like us, moving from home only because of war or poverty.

Desperate to support the aid effort and to discover for ourselves the situation on the ground, four of us from Oxford C2C (an organisation originally founded to support the Convoy to Calais organised by SUTR and the People’s Assembly Against Austerity on 18th June) collected items of aid requested by Care4Calais (a Charity set up by Clare Mosley in September 2015). This list is renewed weekly, dependant upon the circumstances at the time.
We were able to fill 2 cars with tinned fish, bottled water, toiletries and 140 individual care packages which were donated by NHS staff and a group of Jewish school pupils.
Beginning our journey at 0430h we travelled south and across to France on the Eurotunnel, arriving at the Care4Calais (C4C) warehouse in Bleriot Plage at 0920h. Volunteers were already busy, and helped us to unload our vehicles. There were volunteers of varying ages, experience and background; some there for the weekend, others for a few weeks.

We then gathered around whilst Clare briefed us on the current situation:
‘The camp has closed, but we do not believe that this will change anything long term.The CADA (French Govt reception centres) that they have taken the refugees to are not meant to be a long term solution. What we were told is that they will be able to stay for a 4 week period, during which time they can decide if they want to claim asylum in France. That 4 week period ends this week. What we have seen over the first 3 weeks is a very harsh period…The French Government are committed to keep the refugees off streets of Calais, and in order to do that the police have been militant, picking them up and chucking them in detention centres as fast as they can, because they’ve got to be seen to stand by that… after the 4 week period ends they will deport anyone they can…it feels pretty horrible at the moment it feels like they are criminalising refugees; driving them underground. That’s not morally acceptable; refugees are not criminals. We are in a period of change which is difficult to deal with. People say to us, ‘What is going to happen?’. Well we don’t 100% know. We know what is going to happen long term, because long term it’s not going to change anything, because the reason refugees come to Calais is because they want to get to the UK, but the idea they all want to come to the UK is wrong. There are a massive number of refugees in Europe; there’s a massive number in France. A small proportion come to Calais, and those have a strong reason to get to the UK; This exercise won’t change that. Many [refugees and migrants] have family in the UK, or have worked or been educated in the UK. If anything what we may see is smaller camps springing up further along the coast in Dieppe, or Belgium. Refugees are arriving in Calais every day, either by train or on foot; our job is to intercept them before the police get them. The problem is there are over 1000 of them, whilst there are only 20-30 of us.
The French Government have 2 choices, either they start a new facility in Calais, but if they do that they risk another camp in Calais, which is what they said they did not want. Or they set up smaller detention centres in towns all over France, to intercept people before they get here. Whatever they decide, refugees will continue to make their way here.
As the 4 week decline approaches this week we expect things to become desperate as refugees make the decision to run away from the CADAs, rather than be deported.
This makes it hard for us to answer your questions, to put updates on Facebook; it is hard for us to motivate people. I don’t want us to appear disorganised or not focused. We are focused, we are focused on helping refugees in any way we can.’

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Clare Mosley (centre)

Jobs were then assigned, 2 girls who spoke Kurmanji and Arabic were sent to a detention centre, to give moral support to a group of Syrian men on hunger strike; some were sent over to Dunkerque, to take supplies and review the situation there. Others called mobiles to provide vital credit top ups, or sorted clothing and food packages. I volunteered to be driver for 2 more experienced volunteers checking and collecting from the local train station.

On the way we detoured to check the site of the ‘Jungle’ for anyone camping out there I was eager to see what was left of the camp I’d visited in August, and anxious about finding young men hiding out in ditches or scrub. What would their reaction to me be?
Driving up, under the motorway flyover, was strange. Before the place was bustling with human traffic, in and out of camp; some men had been playing cricket, and there was noise. Now there was silence and a white CRS van full of Police, looking bored. We split up, and I followed the route I had taken through the camp in the Summer, except it was completely different. Detritus squashed into the sand everywhere i went; shoes, toothpaste tubes, bits of plastic, a bicycle and clothing. The atmosphere felt heavy and full of ghosts.

Whilst I wandered the police van would occasionally drive slowly past; I ignored it. I discovered later that the young filmmaker I was working with had been stopped and questioned. She was told to leave, but didn’t.
One thought that kept going through my head was that however awful the camp had been, it was a community, it had a vibrancy, it had a school and restaurants. It had life and hope. It made it possible for charities to concentrate on one site.

The Train Station
We left and drove to the small Calais train station in the centre of town, to be met be a Syrian volunteer who had found 3 boys getting off a train. They were 15 and 16 years old, and when he brought them out they looked scared. They were Eritrean. We stood outside talking to each other and these boys, while about 20 CRS sat in vans or wandered around in pairs. The atmosphere was tense and oppressive. I was sure we stuck out, and waited to be approached, or pounced on, but it didn’t happen. We walked out of sight and continued the conversation. Phone calls were made to the warehouse. One of the boys, Simon (15) wanted to go to a reception centre, the other 2 back to the station to take their chances on a train to Paris. They wanted to go on to Switzerland (though I never discovered why). We were going by another 2 Eritreans, another 16 year old and a man in his late 20s; he had travelled from Norway (where he had been welcomed and given permanent residency for the past 4 years) looking for his sister who was in Calais yesterday. Her phone was now out of credit. He only had until the following day to find her as he had to be back at work on Monday.
I collected my car and drove them , in two groups, around the one way system, past the Police, to ‘The Family Pub’ whose owner was sympathetic, and a place frequented by the volunteers on their time off. There we continued our conversations. The three 16 year olds were adamant about catching another train, so i drove them back, past the Police, dropped them off, and wished them luck. I was amazed that my car had not raised suspicion, and was not pulled over.
On my return to the pub i was told that our friends’ sister may have been picked up and taken to the reception centre we were taking Simon to. I discovered from Simon that he spoke 4 languages (his English was excellent), and had walked From Eritrea through Sudan and Egypt, to Libya. There, he had joined 300 others in a wooden boat and sailed to Italy. He had been an assistant Chef, and he had an Aunty in the UK; he didn’t know where, but he had a phone number.
We set off to take them both to St Omer (42 miles away), driving through torrential rain and Police diversions, arriving whilst it was still light. We were introduced to the Manager of the centre who appeared kind; she explained to Simon that she would sit down with him later and explain his options fully, so that he could decide what he wanted to do. He would have a bed and food and other young men in the same situation to talk to.

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She did tell us that he would have 5 days in which to decide to apply for asylum, and where he would want to apply. If he chose not to, he would be deported, but if he chose to leave the centre beforehand, he was free to do so. The young man called Mebrahtu was told there were no girls in the centre and that there had never been. This was really upsetting because of the limited time he had, and the assurances given earlier that the girls were here. The manager explained that she would email us contact numbers for other centres in the area and charities working with refugees, which he could use to try to trace his sister.
We made our goodbyes and left with Mebrahtu, beginning our journey back through the countryside, in the dark, and lashing rain.
After dropping everyone off I joined my comrades to discuss our different days and what we had seen and learnt. Driving home was a time to reflect and process everything.

One thing is evident, especially with the rise of the right across Europe and America. We have to continue to fight racism anywhere and everywhere; we have to educate and demonstrate, whatever the obstacles and frustrations. We have to stay motivated and focused on helping refugees and migrants in any way we can.

References:

https://www.theguardian.com/commentisfree/2015/dec/18/refugees-calais-friends-need-help

https://www.theguardian.com/world/2016/nov/02/calais-refugee-children-evacuated-as-camp-clearance-winds-up

http://www.independent.co.uk/news/uk/home-news/calais-jungle-child-refugees-age-controversy-dubs-amendment-unaccompanied-minors-migrants-a7376151.html

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