Devil's Haircut

So I cut my hair yesterday. It was falling out again. It's the sixth time I've done the clippers and razor routine. Six times now I've seen my hair falling into desultory brown clumps in the sink. I have saved a fortune on barbers though.

It's colder today, so my hat doesn't look out of place as I walk to the bus to go to Bart's where I'm writing this now. Waiting on those same yellow uncomfortable plastic chairs for my number to be called for another blood test, before another round of chemo. What used to be horrific is now mundane. It's true that given enough time you adapt to anything. I'm a pro at this now. I can see the patients who are new to this looking rightly scared and confused. I'm thinking about where to get my lunch from.

To get everyone up to speed since I last blogged here. My last chemo plan finished in April. It was hard going but it seemed to work. My AFP tumour markers went down to 4 and that was enough for my consultant to wave me away for a few months. July came around and on one brief hot sunny day I was called in to the same blank anonymous consulting room to be told my tumour markers were on the rise again. This cancer I have, a weird derivative germ cell cancer, has more lives than a cat and the staying power of a cockroach after a nuclear attack. It's been poisoned, cut at, poisoned, blasted and poisoned again and again. It's still around. The kitchen sink has been thrown at it and still it survives, it's the cancer version of Piers Morgan's career. 

This is Chemo treatment number six. A mixture of Irinotecan and an oral medication called Temozolomide. Luckily unlike last time it's all done as an outpatient. The waiting maybe long (I'm 41st in the queue for the blood test today) but at least I can go home to my own bed and not get woken up for obs at 06:00. I'm on cycle 3 of 4 that have been booked in. Tomorrow I'll be up on the day ward, in a big purple chair for the short I/V drip. My veins are more shot than a career junkie's so I've a Portacath  (internal line, feels like a third nipple), which has been a godsend. I don't get the cannula freak-out every time now I go for treatment, I know it'll work. 

Soon it'll be three years since diagnosis (I'll do another blog for that occasion). A bloody long time and I'm so bored of this now, but I know that's a privileged feeling that's not afforded to all. Anyhoo my number has just been called, best get on with it. 

Recently I've...been watching the new Bojack Horseman, still as funny and bleak as ever.... listening to Fortunately podcast by Jane Garvey and Fi Glover, a gossipy fun look inside BBC radio...reading Oliver Sacks On the Move, an amazing account of a life well lived.

 

 

Brutalism

On Friday I found myself in Barbican library. Once again I had time to kill after my third blood test that week. My platelets and haemoglobin counts had bottomed out and my doctor's were discussing whether to give me a transfusion or not. In this dead time I could have wandered around the shops looking at things I didn't need and couldn't afford, but I was knackered so went to the Barbican.

I looked out at the Brutalist towers and central pond designed by Chamberlain, Powell and Bon, and shivered. It was meant to be a Utopian post war living and arts space, but ended up a confusing jumble of walk ways and imposing towers. It's supposedly the highest concentration of wealth in the country as the flats here offer unrivaled access to the trading floors of the city and a nice Waitrose. Unlike the other famous Brutalist pile The Southbank Centre which does it's upmost to be welcoming and open, the Barbican always seems closed off and uninviting. This is a shame as it has a brilliant concert hall, cinemas and a great library, with a fantastic music section. The brutal concrete towers matched my mood though, dark and uncomfortable.

I'm in between chemo sessions two and three now. What's called the hard yards. I'm constantly tired and irritable. Sleep at night is disrupted but does mean I'm listening to a shed load of podcasts. Days are spent shuttling to and from hospital for appointments and then trying to remember to eat while trying desperately not to fall asleep face first in to a pie. My hair is all gone, but that's ok as with my hoody and media glasses I look like about 75% of the blokes wandering around Farringdon clutching an overpriced coffee. My taste buds have also changed making drinking out of the question. I tried a pint of Pride in the Holly Bush in Hampstead and it tasted like bitter soap. 

The treatment itself is bearable though. I'm in hospital for four days at a time. The drugs are all intravenous and with my Portacath fitted in my chest, my arms are being saved from cannulas and my veins from collapsing. All I have to do is to remember not to turn over on my front as I sleep as the needle can be easily knocked. This happened the last time I was in and it freaked me out as liquid was leaking all over my chest. Luckily it wasn't any of my chemotherapy, but just some saline. 

I'll not know if all this grief has been worth it until I get scanned after this weeks Chemo session. I'm desperate for a break from this Brutal regime, but we'll just have to wait and see.

Currently I'm.. Listening to Stormzy 'Gang Signs and Prayer'..Reading Miranda Sawyer's 'Out of Time'... Watching SS:GB

Happy Happy, Joy joy?

So I've been thinking a bit this week of this talk by Dr Liz O'Riordan, entitled " Jar of Joy"

I don't know what you think about TED talks, I can be quite ambivalent about a lot of them. They are very easily mockable. Liz's though is heartfelt and obviously well thought through. We cancer folk are often given labels which don't reflect the reality of our situation. Words like "brave" "fight" and "inspiring" often are default settings when talking about someone with this disease. So it's heartening to know that others can be as scared and as confused as you are, even if they experts in that field.

The hook of the film is the "jar of joy" a little corny I guess but what it's getting at is a truth. I'm heading to Barts this afternoon for another major operation on my right lung to get rid of three cancerous spots. It's pretty much dominated my thoughts in all the waking hours of the day. When something so big, so significant is coming fast at you down the slipway it's hard to find any j "joy" at all. Reminding yourself that there are still good things that happen every day even in the middle of a massive dumpster fire of a life is quite important.

So putting my cynicism aside I've been trying this last week or so to carve out at least one fun thing a day just for me. It didn't need to be a big thing, but it did have to make me smile. I didn't go full on and get a jar but I've kept to my word and got my arse off the sofa and done lots of fun things. From taking my mum out for cake and coffee at the canal side cafe, watching a couple of films at the cinema, making time to see friends to even stopping on Blackfriars Bridge to take in the view as I cycled to work. Moments that I can relieve and relish when I'm in a morphine haze the next few days. 

I guess it's that old adage of counting your blessings. It can be really hard to do especially after over two years of dealing with the most awful crap. Good things still happen though, fun is still about, it might just be crowded out at times by hospitals, drugs and the rest of the Heathrow arrivals hall of baggage that goes with chronic illness.

Hopefully this surgery will be a success and after a time of recuperation on the sofa with Netflix, they'll be many more moments of joy to come. 

Currently I'm... listening to Oliver Burkeman on the power of negative thinking (R4).... Reading Joseph Connelly Men and Women.... watching Planet Earth 2 - dancing bears! 

The Waiting Game

So we're back to it kids. 

After a lovely 10 weeks of relative freedom after my Radiotherapy ended on my birthday. (I travelled!, saw far away friends!, drank craft beer! and didn't see Bears!), I was back at the East Wing of Barts in the PET centre for my CT scan on Saturday morning.

The lead lined room of fun was there to determine if the 20 sessions of zapping have actually killed the two spots of cancer activity left in my surgery and chemo ravaged body.

*New readers, 1) Hello! 2) I have Mediastinal germ cell cancer originating from a Testicular Teratoma way back in 1998*.  

The spots are on my right lung and my left pelvis. So we're hoping that this treatable but bloody resistant to be killed totally cancer has been well and truly got this time. 

I'm waiting now to see my consultant on Thursday 18th for the results. So I'm in an existential limbo right now. At the moment I'm feeling healthier than I have for almost all of the last two years. I'm riding my bike every day, I'm back at work full time and I've enough energy to see friends on the weekend. Also my hair is back! I feel vaguely normal again (and normal is the holy grail for any cancer patient). There are still problems, my voice is not great and gets tired easily, and I go to Guy's tomorrow morning to pick up my hearing aids. That's the price (and it's a heavy one) of entry to live my life. I'm gladly paying it and having lots of fun again. 

So I'm not sure how I'll take the news if it's not great. How will I feel if there's more treatment to be had, or in my 3am insomnia thoughts, no more treatment to be offered? After 3 different sets of chemotherapy, A 7 hour heart and lung operation, two stem cell transplants, losing my hair three times, and a month of radiotherapy.  I'm so sick of it all now it's tempting to say NO MORE, and take what comes. I think my body could probably just about take another round of chemo (if, and there might not be, a different combination of cytotoxins available for me) or radiotherapy. I'm really lucky that I work two minutes away from my hospital so I could keep on working (and importantly paying the rent) if that happens.

Psychologically I think I may be close to done though. Cancer's hardest battle is in your head and I'm thoroughly bored/tired with it now. My cancerversary (sic) is only 7 weeks away and to think I still would be in treatment would be devastating. Two years of my life constantly trying not to die is exhausting. I've friends going through similar treatments now to what I've had and they're handling it with a lot more grace, humour and dignity than I ever did. 

I've had a brilliant summer seeing some great sights and hanging out with my favourite people in the world. The luxury of not having to be in a hospital / GP surgery is wonderful. 

God this blog has turned into a bit of a downer hasn't it? But I'd say I'd always be as brutally honest on these pages as possible and that's what I'm doing.

I'm sure I'll find it in me somewhere to keep on trucking with it all. Too many people are invested in my life for me to ever give up. I'll keep going until I can't anymore, it's just a lie to say that it's an easy thing to do. So forgive me if we meet in the next week and I'm a grumpy git (some of you may not even notice a change). As Pete Tong says "We Continue!" I'm just sick of this bloody record. 

Currently I'm...Watching the Olympics...reading Rebecca Solnit's "Hope in The Dark"..listening to Chance the Rapper "Coloring Book"

 

 

Brexit and Cancer

A week on and it's not getting any better is it?

I'm trying to wake up everyday and be positive but I can find at least three news stories in three minutes which would be headline news on any other summer day, apart from June 2016. We've set fire to our own house and each day instead of water hoses and fire trucks, a Shell tanker full of premium unleaded arrives. 

I'm not going to rant about the result and political fallout, because there are far better people out there to do that (I'd follow @jimwaterson of Buzzfeed News, @juliamacfarlane of BBC Politics and @DavidAllenGreen FT law blogger for the latest good info) and it's changing by the second. Anything I write this Wednesday evening will be out of date if you're reading this on Thursday morning. Also I'm not a political hack I'm a travel one, and through circumstances detailed here a reluctant cancer specialist. So I'm focusing my anger and frustration on that. 

So if (and it's a big if) Brexit goes ahead and Article 50 is triggered what does that mean for us cancer folks? How will our treatment be affected?

Firstly, this tweet on Friday morning from the head of Barts HR got my attention:

Michael Pantlin @Michael_Pantlin

Our 1700 colleagues and friends from EEA@NHSBartsHealth need to know how much we value them today

7:14 AM - 24 Jun 2016

or all the bluster in the campaign about funding for the NHS, no one really talked about the staff. Ending freedom of movement will have serious consequences for the staffing of hospitals. This number quoted is only EEA staff by the way at *one* Trust, not including the many workers from West Africa and East Asia. As some of the nastier elements of the Leave vote think they've got a victory for the idea of forced repatriation, this is  really worrying if you are a patient or staff in the system.  I personally don't care where my doctors and nurses come from, I just want them to be well trained and enough of them not to be stressed and tired all the time.  Also I don't want them to fear getting abused on the way to work just because they might look or sound different. 

Already the Brexit vote is having an effect on NHS Staff recruitment  

http://www.bbc.co.uk/news/health-36664094

Secondly, pulling out of the EU will have serious implications on Cancer research  and co-operation as this article in the Indy points out

http://www.independent.co.uk/news/uk/politics/eu-referendum-brexit-could-put-cancer-research-at-risk-claim-leading-scientists-a7002586.html

This is a potentially horrific outcome as science and particularly Cancer research is not about nerds hunkered down in individual sealed off labs anymore but constant collaboration and development. If that gets taken away then we're all the poorer for it.  The fairytale that the money we pay for the EU will now be spent on research was  nicely debunked  in a tweet by a consultant Neurosurgeon: 

Dr Anita M. Sharma (@ImAnitaSharma):

Ive spent my career working on cancer research; only pos by EU funding. I hope Brexiters realise devastation this will cause to medicine

 And thirdly, funding for the NHS and cancer treatment will be affected  as we've just probably put ourselves into a recession of our own making. 

http://www.theguardian.com/politics/2016/jun/24/brexit-vote-leaves-uk-on-brink-of-recession-economists-say

The cost of borrowing has just gone up as we've lost our AAA rating, Treasury income will certainly drop as contracts and work head overseas, cost of capital expenditure projects like new Hospitals  will rise, so the funding gap for the NHS will increase. Without the tax reciepts more Austerity and cuts to the NHS will happen, not less.  As I believe a lot of the Brexit  vote was gained on the genuine concern about the lack of GP and hospital provision, the irony of the Leave vote is that this will make matters a lot worse than better.  

None of this was due to our membership of the EU by the way, but on policies of our current government.  The EU was just a really good scapegoat. Add in a fact free campaign and notions of sovereignty and "Take our country back"  and you've got a lethal mix. 

As a cancer patient and likely to be one for a good while yet, I'm genuinely frightened about what we've just done. This will have a profound effect on cancer care and provision.  I don't think most who voted  Leave really understood the full implications of what was involved. We're just getting started on working out what it all means. In the meantime we have no effective government or opposition, and the house still continues to burn.

*End of Rant*

PS. I'm ok thanks. I'm enjoying this small window of opportunity to travel and I'm back at work full time.  I'm seeing my consultant next Thursday for a general check up and bloods, and getting my hearing aids fitted the week after that at Guys.

Currently I'm... Banging my head against the wall in disbelief....Also I liked Chvches set at Glasto. 

 

Time off for good behaviour

This is the first week in almost a year where I haven't had any medical appointments. No doctors, consultants, therapy or treatments. I keep double checking my notebook and phone to make sure I haven't missed anything. I even found myself going through my lever-arch files making sure there wasn't a letter I'd missed reading.  I think I've become institutionalised. Like Brooks in the Shawshank redemption,  I've forgotten how to act in the real world  (although I can go to the loo without asking permission). My next Consultant appointment is not until 7th of July, and barring picking up a summer flu I won't be in hospital again until the Big Scan at the start of August. It's a weird feeling. 

So to recap  the last six weeks (apologies for my lazy blogging). I finished my 20th and final Radiotherapy session on my Birthday in mid-may. All went well but my thinking that it would be a walk in the park compared to chemo / surgery was naive to say the least. Just because there's no veins being opened doesn't mean nothing is happening. Cells are still being targeted and your immune system is working overtime. It leaves you feeling shattered. Many times in my month of zapping I didn't want to go in to Barts. I wanted to stay in bed watching "Homes under the Hammer" and listening to the sessions on Lauren Laverne's 6 music show. As always though Barts is a big ol' perspective machine, and patients were being wheeled in on chairs and beds. If they can do it, I bloody well can. So you grit your teeth, exchange jokes with the receptionists in the basement and get on with it. 

The day after it finished and with the blessing of my Radiology consultant I jumped on a Ryanair special from Gatwick to West Cork. I spent 5 days driving around the hills and mountains, eating seafood and watching some brilliant local musicians. I slept for at least 10 hours a day and still felt knackered but it was good to escape. 

So back in London it was another round of Hospital visits, notably to Guy's where I met an ear surgeon who confirmed my deafness caused by one of my chemotherapy drugs, Cisplatin. My low levels are still ok , but mid range and treble are all gone. So I'll be soon fitted with hearing aids which should help. I'm finding it really difficult to be in noisy pubs or hold conversations in cars. I'm an expert in reading the acoustics of a place now. I'm really not a fan of the whole warehouse, stripped down aesthetic. Exposed brick and pipes just mean the sound bounces around and doesn't get absorbed. An old man's pub with leather benches and partitions is so much better.  If you want to find me at gigs I'll be one the one next to the Bass Bins. 

 I also saw my oncologist who was happy with all my blood counts. My ACP count which measures the amount of cancer activity in my  blood is now back to normal and my platelets and red/white cell counts have recovered from the last series of chemo. Until the PET CT scan in August to see if the radiology was a success, there's not much else to do.

I'm using this brief window of opportunity to try and go see as many of my friends as possible. Cancer treatment leaves you so exhausted most of the time you don't have the energy for visits. Often a trip to the local library and a coffee stop can leave me knackered for the rest of the day. As I don't know what's going to come in August though (there is always the spectre of more treatment over the hill)  that I'm travelling as much as possible. I was in Bristol and North Wales last weekend, before that Warwickshire. Next month I'm excited to be going to Colorado for two weeks to play in the Rockies and drink craft beer. Amazingly the US government has granted me a Visa. So I'm going to go before they change their mind / Trump becomes president. 

Also happily I'm still back on my bike plodding around on the new cycle superhighways. I get out of breath really quickly, and the lycra warriors are always impatient to overtake me. I don't care though, the feeling of freedom and normality to be able to get around without being on a bus or the back of a cab is great. Having Cancer is something that is going to be with me for a long time to come. I'm fed up of it dictating every part of my life, so doing something as simple as riding to Sainsbury's is almost a revolutionary act right now.

Even if the scans come back ok, I'll still be under strict monitoring and checks for the next year before my consultant will be happy. This is my reality. I just have to get on with it, and make the best of my time off for good behaviour.  

Currently I'm...watching Euro 2016, and cheering on Iceland!...reading "The Idiot Brain" by Dean Burnett, a great look at how our minds work...listening to Tegan and Sara "Love you to Death" great stuff from the Canadian duo.

The Next Episode..

Well this is a very belated blog post, nearly two months after the last one. But like the British winter I am so how still here, and on to the next phase of the treatment for the Cancer That Will Not Die (tm).

Since I last scribbled on these pages, I've finished my course of Chemotherapy and started on a four week stint of Radiotherapy. The chemo was as dull, boring and tiring as it always was. Subsequently I've managed to lose my hair for the third time, and my hat collection is still in full use. 

What's new is the exciting world of Radiotherapy. Images of lasers and James Bond films come to mind, but the reality of the process is a bit more prosaic than that. The Monday after I was finished with the Chemo I was in the basement of Barts having a CT scan to determine exactly what areas need to be zapped. Once this was done I had 6 small marker tattoos (3 for my lung, 3 for my pelvis) applied. I asked for a Tiger but  apparently they don't do requests. This was so the machine, called a linear accelerator (linac) knows exactly where to line up on your body, so it doesn't irradiate the wrong bit of you, leading to pain / death.  

 After a couple of weeks rest to let my immune system recover from the poisoning I embarked on the course of Radiotherapy. It's 20 sessions in total of weekday zapping treatments. I'm halfway through having done 10 now. The process goes something like this. You arrive in Barts basement and get allocated a machine. My one is called Mars (they're all named after planets) and is a temperamental little sod. Three times in the last week it's not worked properly or gone on strike in support of the junior doctors. This is a pain as they have to fit those patients in to another machine, which causes long delays. 

Anyway if the linac machine is working, you get undressed down to your pants and socks put on one of those stupid gowns with the gaping hole at the back. Then you lie on a bench and the technicians line you up using green lasers (see a bit James Bond like). This is basically being man-handled by the team into a position which you then have to stay in and *NOT MOVE FROM* Like playing a terrible game of statues. Once you're in the right position the linac goes to work blasting the cancer cells with concentrated radiation, in the hope of breaking down the tumour and killing it. As I have two sites, I get my lung done first. Then we stop half way through to set up the machine in a different way to do my Pelvis. If everything goes to plan you can be done in 30 minutes. If not you can be there for hours hating everything. 

I  was stupid enough to think that this was going to be a doddle compared to the chemo. In a way it is, there's less throwing up for a start. I'm cycling in everyday (5 miles) and continuing to go to work. The process doesn't hurt but it is bloody knackering though. I'm sleeping up to 10 hours a day at the moment just trying to get enough rest. My consultants are happy with the progress and hopefully when this treatment finishes on my birthday *cough* 16th May *cough* I'll be not needing treatment for a bit/some time / who knows* *delete as appropriate. 

As a treat to myself, the day after my treatment I'm off to West Cork in Ireland for a week to drink whiskey, read Yeats, look at the sea and have a mini-breakdown. 

So that's you up to speed. Everything is dull and repetitive but we're slowly getting there.

Currently I'm...still getting over the last Episode of Line of Duty.. listening to The Hamilton Soundtrack..riding on the new cycle superhighway. Bike infrastructure finally comes to London! 

All in the mind..

So what do you think of when you hear the word 'Mindfulness'? If like me you only knew it from buzzy articles in newspaper weekend supplements you'd probably dismiss it as a trend of the week, like clean food blogs or adult scooters. If you bothered actually to read any of those articles you'd here phrases like "being in the now" and "awareness" written next to a picture of a young women sitting on a yoga mat, on an island looking out in to the Aegean sea. (I know because I've met them, probably in Hvar Croatia, whilst being Mindful, you can guarantee that in the evening they'll be blasted on vodka mixers dancing to Euro House). So when late last year my clinical psychologist suggested that I attend a Mindfulness group organised at Barts, I was appropriately sceptical.

 In my brain addled post hi-dose chemo state I went along though. Mainly to get myself out of the house to be honest, but also to prove that I am open minded to such things. We all like to say we are "open minded" because it sounds nice. It's another thing entirely to commit to eight Thursday mornings to find out if you actually are. So even though a lot of what's been written about it pushes my buttons in the wrong way (mysticism, prominence of Eastern over Western philosophy, Tibetan Bells) I thought it would be good to experience it for myself.

So what is it then? Well the blurb we got in week one "Mindfulness is a way of being more present and aware" so far so psych 101. It's founded in Buddhist philosophy, though thankfully this was a secular approach on the course. I would describe it as using psychological techniques to examine what's happening in your mind so you can make better choices and decisions. As the autumn had well and truly scrambled my brain, anything that could give me a sense of control was worth a go. Well that's the theory at least, in practice it is somewhat different. 

Each week started with a meditation. I've never done it before, some in the group had (all were there because of Cancer). Just stopping the chatter in your head for a second is a really hard thing to do. Especially when then voice in your head is a bloody critical one narrated by Ian Paisley (see previous blogs for details). So it took a few weeks to get the hang of it. Even then some meditations were easier to get than others. The temptation to scold yourself when your mind wanders to something else, like what you need from Sainsbury's, is quite intense. One of the useful things I did pick up on was that that was no big deal. It's just a thought. It happens all the time. The purpose of the meditations is to try and ground you in the present and become more aware of your actual state by observation. This can be tricky as we're all programmed to keep thinking backwards and forwards, what has happened and what's to come. To just be present in this moment is a weird sensation and it takes a lot of practice.

Another concept that was taught to us that 'Thoughts are not Facts'. This was probably the biggest thing I took away from the course. When you go through any trauma, particularly a chronic disease, your thoughts can be full of negative experiences. There is no getting away from it. I go to hospital three times a week, see my GP regularly and get reams of letters through the post. It dominates your waking life (and with the joys of Chemo induced insomnia, it can dominate your sleeping hours). This can give you the belief that all that negatively *is* your life. So to understand that thoughts are impermanent and different from facts is quite a revelation. Giving space to other thoughts apart from Cancer ones is something which is really valuable. Being a Cancery person doesn't mean that's all you are. There's lots more going on, despite all the crap.

As well as the meditation practice we were also given weekly challenges. These ranged from taking time out in Nature, recording 10 things you are grateful for that day (recommended) to the more problematic "Random Acts of Kindness" This is where I lost my way a bit with the course. It's a trite bumper sticker slogan for people who want to sound profound on Facebook.  It was a task to connect yourself to the wider world through kindness. I think if you can't open a door for someone or buy them a coffee once in a while you're a bit of a dick, whether doing it Mindfully or not. 

Overall I think it was worth my time to go and do the course. The two psychologists leading it were friendly, enthusiastic and helpful. The others attending were all game to give it a go and it was really interesting to see how they experienced it (and I don't think I'm a "group person" it reminds me of Fight Club, and no one wants Meat Loaf crying on their shoulder).  Am I more mindful as a result? I'm not sure, but it's certainly given me more tools to use in my armour, which can never be a bad thing.

Currently I'm... Riding my bike again! I went for a spin this morning and it was great....Watching Hail Caesar! The Coen brothers romp through the Golden Age of Hollywood.. Listening to The Verb, poet Ian MacMillan's show on Radio 3.

Everybody's Talkin'

So this morning I did a talk to 30 psychology PhD students at the University of East London at Stratford. It was a fun thing to be invited to do. 

Here's some useful links I talked about. 

John Underwood's Blog :- http://jmunderwood.com/

Rowenna Kincaid's Programme http://bbc.in/2115f4q 

@TechnicallyRon's Mental Health site http://mindtank.co.uk/

If you were there and want to ask any questions I'm on michaeljormerod@gmail.com or twitter @michaelormerod. 

Full Blog to follow..