This was my Christmas day, very straight forward,
watch daughters open their Christmas stocking presents,
go to the tree and open presents with the family
and then eat a feast.
After that it’s all recovery from over eating as we play games, do jigsaws and read.
As the family watch TV, I read and then come to blog. This is my day off, take the usual drugs and then indulge. Tonight I will sleep and wake to renew my battles with new resolve.
So this is Christmas. I wake and find my partner has gone to the kitchen to prepare out travelling Christmas dinner. My younger daughter and I discover that we are both staying out of the way, the eldest is just asleep. After a suitable amount of time we brave the descent to the kitchen for toast and coffee. It’s a well oiled plan that is in operation. Food cooking in the oven, vegetables prepped, sauces ready, all the components of courses neatly arranged with their carriers. This is a clockwork team in action. Breakfast done, the packing begins and we count down to the magic departure hour of 11am.
At precisely 11am we are heading towards my partners mothers house, having relocated the cars on the drive. A magical journey, every time the front windscreen heater/blower is activated there is the delicious waft of Christmas dinner aroma through the car from the boot. We arrive and spring into action and within minutes the oven is warming meat, the pans boiling vegetables, and the pre laid table is being loaded with goodies. There is time to open wine and non alcohol lager and get comfortable. In no time at all a Christmas meal with all the trimmings is before us and we set to and indulge in a lovely feast. Of course this is followed by Christmas pudding, set ablaze with some Spanish brandy that we have discovered in the dresser, and brandy butter. I imagine that at some point on this day most people reach the stage where they just want to sit and stare into space and allow there gastric system to recover. We retire to the lounge and share presents before settling to play a game, which consists of answering questions about Christmas in teams, and decking a Christmas tree with baubles acquired with correct answers. It would appear being question master is more demanding than it looks. A couple of goes at this and we are ready for cold drinks and a DVD. We watch The Greatest Showman and resist singing along. Time to clear the decks, turn a mattress and prepare to leave for home.
I drive us home and we collapse in front of the TV and recover our balance. Soon it is time for sandwiches and more drinks. Tonight is our Christmas Eve and we will go to bed happily knowing that in the morning there will be presents under the tree. It’s magic. So I will down my drugs and hope to sleep. There has been a lot of WhatsApp chat today, mostly people wishing each other happy Christmas or sharing a seasonal or personal thought. I hope they have all had days of fun and warmth.
Well a slow start to the day for me as I lazed in bed till 10:30 after a reasonable night sleep. I feel almost human today and get up to a scrambled egg breakfast with all the family, as my youngest daughter arrived home yesterday. Morning drugs done and a plan formulated I get myself organised while my family get ready to go out and get last minute food and deliver invitation cards in the village. I ritualistically seal the cards.
My family depart and I settle down to do some work when the phone rings. Apparently I have won a basket of face products. Remember I bought raffle tickets at the oncology unit in response to getting the high platelet score I needed? Well one of them came up, so when I go into the unit to dump my now full sharps bucket I have a prize to pick up. Merry Christmas. I also bought another part of my civil partnership outfit. A midnight blue velvet evening jacket. Just the thing to go with plum trousers and a white shirt. Trust me it will be fine.
I drive to the gym wondering quite why, but in reality I know why. Cancer does not rest, so I can’t. If cancer ever takes a day off then I might, on the other hand I might take the opportunity to kick it in the nuts when it’s not expecting it. I do my usual hour on a cross trainer and burn 713 calories. Disappointingly I do not get my 10,000 steps reward while on the cross trainer so I have to walk the gym floor for ten minutes to get there. As it is Christmas the gym closes early at 4pm with the result that the bar closes earlier so there is no hot chocolate and mince pie for me.
When I get home I find mince pie production in full flow along with rows of pigs in blankets waiting to be stored. I grab ginger beer and a sausage roll and watch TV, while I unwrap my Christmas goodies parcel. Crystallised ginger, sugar almonds, Turkish delight, New Berry Fruits and Champagne truffle chocolates. So as the kitchen begins to smell of fresh mince pies I settle down to write the blog. Tonight will be getting to bed early not forgetting to put the mince pie, port and carrots out for Father Christmas and Rudolf.
Tomorrow we visit my partner’s mother and take her a christmas meal. There will be all the festive fun of food, crackers, jokes, the queen and dvds of favourite films before we return home to an evening of even more indulgence.
Today should be a celebration, it is the last day I get to stab myself as part of my chemo. It would be worth the effort if I could celebrate with champagne, prosecco or a beer, but I’m a boring bastard who grits his teeth and does the right thing to protect the kidneys that are still fighting to work to full capacity.
So now I have a full sharps box that can be returned for disposal and I can focus on doing the rest of the fourteen days left in the cycle. I am hoping I can get stronger or at least strong enough to train off the extra weight the steroids have packed onto me. Of course there are the post-chemo hopes that things will normalise. Perhaps my fingertips will not be as numb, perhaps my beard will grow, the hair on my head return, my steroid football head return to a more rugby ball shape, lean and wolfish, (truly deluded there). Perhaps my finger nails will return to being finger nails rather than the claws that I have grown over the weeks. I have acquired growth ridges on my nails as each cycle has laid down a new layer of nail. I feel like a tree whose rings can be counted and my age determined. My chemo history is written in my nails, Is there a PhD in this I wonder? Is there a predictive marker in this as to the good or bad prognosis for chemo? Could I get a studentship to do this? What is clear is that for a while I will struggle to pull ring pull cans. The thick nails are a definite unhelpful addition to this activity. I live with a dull ache at the end of my fingertips all the time. It also slows down my typing as it feels as if I suffer from fat finger syndrome all the time.
I wonder if I will lose the breathlessness that the additional weight gives me. Everything is an additional effort as I heave around the additional 10 kilos that I have put on. It is a “me” that I hate as it undermines all the time I spent in the gym trying to keep fit and able bodied as I headed into older age. It seems cruel that all that effort can be wiped away in such a small time. I know what lies ahead. Hours in the gym doing small sessions to keep everything working and to drive off the accumulated layers of fat. This of course goes hand in hand with eating a diet of protein, fruit and plants. No sweets of course once Christmas is over. Why do I bother, I’m not sure but at root I want more time with my family and more time to complete one or two projects.
So if that is going to happen then I need to keep fighting, but its tiring when the simplest things tire me so much at the moment. It makes me short tempered and irritable at times, I know that, but the effort it takes to keep my direction, to keep focused and to keep making sense of my situation leaves little energy for anything else at times.
At the moment all I need to do is reach the 7th of January and get out of the cycles end. It stops being chemo at that point and becomes another stage, the cross your fingers stage. For three months I shall cross my fingers and hope that all I do keeps my PSA level from rising, that my platelet count stays in the normal range, that my kidneys keep working at the same rate or better and that the lesions in my back do not spread and my lymph system holds its own for as long as possible. The big one is hoping my body is stupid and does not figure out a way around the hormone depletion therapy. When that happens the cancer feeds and progresses. Up will go the PSA and time will speed up as the small systems of my body begin to fail. In the three months of crossed fingers I will of course become civilly partnered and the final arrangement of the real and secular world will be in place. Then perhaps I can rest a little and build a life style that reflects my interests.
I notice that recently I have not read much even though I have a growing pile of books that I suspect may grow over Christmas. Neither have I written the letters that I have in my head. I always feel rude when I do not reply to a letter. I hope to be able to resume my correspondence with those people who have generously continued to write to me during my chemo. I look out to the garden shed writing room and hanker after sitting in there writing and reading, at the moment it feels unsociable to abandon the family to do this given the Christmas season. It needs to be one step at a time I guess.
As for today, its one that I can do without, started well, got better and then went downhill, probably my fault. More to do with the effort of fighting than anything else. I haven’t got time for the fannying, farting and fucking about that goes on when I am waging war against what’s trying to kill me.
P.S. Should the christmas experience prove too much you can choose which pit of hell it matches according to the classical model, obviously not PC but of its bigoted times:
Limbo looks okay, nice people already there. I will book the Dawkins suite. Also apt given the nature of time I’m my situation, yes Limbo is for me.
Keep it simple Roland. A better night; still some interruptions but manageable. The night is bad but in the early morning when it’s light I manage to drift off in a more relaxed state. It is a strange but true phenomenon. So this morning I get out of bed about ten and go into my routine of warming the stab stick, having a bacon sandwich and coffee and getting ready to deal with the day. I dress and identify some jobs to do to help my partner who is busily wrapping presents. It’s those last “clearing the decks” jobs ready for Christmas that need doing. So I change light bulbs, put towels away and tidy up .Everything I do makes me breathless and hot and sweaty. It is a combination of effort and spontaneous hot flushes. I am determined to fight today, harder than yesterday and go to the gym. A call from my partner’s mother tells us that one of my partner’s aunts has died. Naturally my partner’s mother is upset at the loss of a sister. It is one more reason to be mindful this Christmas and one more reason to keep looking outside myself as the real world continues to affect those around me.
I need to pump the poison around me and to try and keep all my systems working and moving. My partner and I go to the gym. I manage an hour on a cross trainer, going at a pedestrian speed I reach 706 calories. I do not make 10,000 steps and have to walk around the gym floor about ten times to get my 10,000 celebration. A long shower and a longer rest in the club lounge drinking hot chocolate, which revives me a bit.
Home and we put out the recycle bin early due to Christmas and settle down to eat and watch the end of “His Dark Materials”. Dust and armoured bears is about as much as I retain; that plus the fact that there are more books to be turned into TV shows. My body begins to ache as a result of today’s efforts so I fight back and order childhood treats for Christmas from Amazon. If I am really lucky I will not need to dash around much over the next couple of days until the main event. Tomorrow is my last self stab day. A milestone I think. I shall try to find a way to celebrate it, but first I will see what tonight’s sleep brings.
The night was hell, little sleep, interrupted with painful legs. Fitful and restless, disturbed. I finally got out of bed at about 11:30 to self stab and to bathe. I feel like Gollum and probably smell like him.
I eat life saving bacon sandwiches and drink coffee. I mend a light fitting and I am drenched in sweat. I get taken out to buy sweets and food before hitting the sofa for the rest of the day. Tigers lose, Liverpool win. I am at war, crave my bed and fear another night like last night, another hell.
I’m tired and prepare to retreat to bed, perchance to dream. Not a good day, tomorrow will be better.
I stared at the ceiling for a long time this morning having got my phone and stab stick out of the fridge. I was not feeling good and I got a message from a person who I had met at chemo. She has just had an operation but found that it had not got all the cancer, so she faces more operations in January. She is very upbeat and positive and wishes everyone a happy Christmas. Compared to others my situation is much better and she is an inspiration to carry on. Yet I feel wiped out today and I am having trouble getting myself up to do the self stabbing bit. I’ve never got used to it, and I think I never really want to. There is something about not letting your body become institutionalised. Eventually I get up and bring the stab kit into the bedroom and get on with it. My mouth tastes strongly of iron and I am hungry.
I dress and go to the village cafe for breakfast realising that I am wearing the wrong clothes for the rain that is falling ever faster. Home and I tidy up and clear away the growing pile of cardboard. While I do this various wet people arrive to deliver more packages. I fill my drugs box for Christmas week and check that I have ordered my next 28 day injection.
I make a couple of calls and find that something I had been waiting for has arrived at a shop in town; I hesitate but get into the car and drive into town. It’s teeming and the roads are flooding around the village. I am in and out of town quickly, grabbing a hot chocolate and Panini while there. Home again and I wrap the final presents. Time to cook dinner, a curry that I hope will take the iron taste out of my mouth.
My evening is all television, as I drift in and out of attention and feel progressively more tired. I can feel the dark and tricky churning away inside me, which appears to be part of the poisoning process. This is a tricky time as I tend to slip into not caring for myself or anything else. It’s an effort to focus and to keep direction, but I think most of the stuff to do is practical stuff that can be managed. Keeping it simple seems to be the key at these times and remembering that it’s okay not to be okay sometimes, although the voice in my head says “under no circumstances buckle”. Time to sleep and hope tomorrow is better, there is a lot still to do.
I was woken up to be told it was nearly seven thirty and as I said I would leave for London at 8 o’clock things were going to be tight. Helpfully my partner put out my self stab stick to warm from the fridge as my eldest daughter made me coffee. This gave me time to check e-mails, WhatsApp and Amazon. So up and in to a quick self stabbing noting that I am short on elastoplasts and then dress for travel. I down a coffee and the last piece of toast and we load up the car.
Finally we get under way and get petrol, wine gums and red bull, my standard driving companions. Then it was a flog down the motorways. It was a reasonable drive, the usual slow parts due to road works, but at least we never came to a standstill. Therefore a good journey. We arrived in London at my sister at 11 0’clock and found a parking space close by. We were treated to coffee and warm mince pies and exchanged gift bags and packages while we chatted about a range of things, like relatives and the state of the world. My sister has decide to come up to Leicester for the civil partnership ceremony on the 24th so we sorted out some of the arrangements for that. I got ready to leave and loaded the car with its returning parcels and waved good bye to my sister and my daughter who is staying overnight prior to a meeting in London on Friday.
I found my way to the M4 just as it started to drizzle, from then on the rain just got worse and driving was a miserable experience. By the time I got to junction 21 for the M1 I missed it due to focussing on not running up the back of the other traffic in the rain and spray. So off at J22 and round St Albans bye pass to get back to the M1, getting beeped along the way as I tried to find the right lane to get me to the motorway. The rain just got worse as I headed north but I think I have an inbuilt sense of north now.
Getting near to Leicester I decide that I will eat at the gym before I do any exercise and head in that direction. A jacket potato and tuna later eaten while completing the crosswords and all thoughts of exercise were out of the window, I was more tired than I realised.
I got home and started to clear up and attend to one or two chores related to Christmas and the 24th ceremony before my partner retuned home. I also sorted the post which contained a nice pair of socks from a friend and colleague from my York days. My partner arrived on time as tonight her singing teacher comes to give her her lesson so we need to eat and get ready. Tonight this means getting the Christmas decoration storage boxes back in the loft and the kitchen into some sort of shape. In the midst of this Mr Amazon delivered more boxes. I still have yet to get one that sings to me. I also get a message to say that my pre Christmas present of bath bombs to another of my friends in York has arrived and is being used as intended. By the time my partner and I have got the place more or less straight, had time to get irritated with each other and generally niggle the singing teacher turns up. There is much hunting for gin and something to mix it with before the singing starts. Is it me or does it sound better tonight, perhaps the gin helps.
So I take the opportunity to write the blog and plan an early night. Tomorrow is my last chance to do unaccompanied Christmas last minute shopping and to wrap in secret. It is beginning to feel Christmassy. Not an exciting day but one where I kept doing stuff and tomorrow I can go to the gym and continue to drive the poison out of me.
The Christmas season starts as I wake up to my last shopping day of the season. Tomorrow is the Santa run to London and after that I will be surrounded so that secret squirrel activity becomes difficult. The best I can hope for is to lock myself in a room to do wrapping. So I am up and making toast and coffee once everyone else has left the house and preparing my hit list for the day. Breakfast done I can have my block dose of steroids and usual meds and get on with organising my day. At first I think I might have to drive out of my way to sort some things but realise using my phone as a phone really does save time. I make the call and confirm some arrangements and give the go ahead on. Obviously cannot say what but all is in hand now.
I drive into town and start my Christmas attack, I know what I want and where from so I am focussed and have little patience with those fellow humans who appear to shop by wandering around aimlessly like distracted supermarket patrons roaming the car park wondering where their car is. For god sake get a grip! So I dive into shops and take what I need in its most convenient form, which is code for pre wrapped and haggle a bit over other stuff. I surprise myself with an “off list” spontaneous buy, but an irresistible item that does not break the budget, unlike some others. My problem is that I find spending money really enjoyable once I get going and this is turning into one of those times. I think I have finished and retreat to a coffee shop for lunch. Hot chocolate, which is good for calming the anxiety of spending and a tuna melt with a mince pie on the side. It works and I consult my “to get” list. Just one more thing to get and as I sit in Costa Coffee I utilise my phone to complete the list. Job done, Christmas shopping done, time for home. As I climb to the roof of the car park I realise how breathless I am and just how much I am fighting the poison, that and the additional weight I am carrying.
Home and I have a porch full of mail and deliveries, which I sort into neat piles on the kitchen table. Mine has a fat letter in it that states it is important from Saga, perhaps they have heard of my impending doom and are going to offer me a really good deal on dying, but no its just the house insurance renewal. I am pleasantly surprised to find it is £300 pounds cheaper this year, can this be true? What is more they are guaranteeing this price for three years! I ring them up, more real phone use, yes it’s true. I immediately transfer it to a direct debit on our new joint account, so another element of my affairs is tidied up. I wrap the London presents and head for the loft to disgorge the Christmas decoration boxes. In the process I manage to drop the door wreath down the stairs and discover it does not bounce but breaks into a thousand pieces of blown polystyrene and pine cones. No time today to get a new one but there is a man in the village that is selling new ones from his front garden so he can expect a visit quite soon. So for a couple of hours I play deck the tree with lights, my traditional job.
Once done I clear the kitchen and sit to watch Liverpool play in the semi final of the world club cup. During this time my partner and eldest daughter appear and set about their end of work day routines. Dinner done and eaten they set to on decking the tree in tinsel and baubles, while I retreat to blog, but I get side tracked by another idea for a present for my partner and a little more Googleing and Amazoning takes place. By this time my UV bulbs and table lamp have arrived and I play with illuminating my UV T shirts from Cyberdog. My heart and rib cage T-shirt now light up as they should. This is clearly something I am going to play with over the next few weeks with UV tapes and body paints.
I finally get to blog, still a bit earlier than usual, which means I can get an early night before facing the drive down the M1, M25 and M4 to get to my sisters in the morning and back in time to go to the gym. I conveniently forget that tomorrow is the first of the five self stab days I have ahead of me. The start of a new cycle seems to compress the need to keep direction and tests the resolve. Still a drive to London should prove diverting. Must remember to check the tyres and buy the wine gums, which stop me getting bored. Till tomorrow then.
So today is the day I start cycle 6, the final cycle of my chemo. It starts well with a bit of a lay in and a lazy selection of what to wear to face the day. I am on a bit of a mission as I promised myself to get to the GP surgery early to make a date to get my B12 injections up to date as they ad lapsed. As B12 is quite important element in keeping platelet level up it seemed a wise thing to do given the anxiety over my platelet levels over the last couple of days. So I pop down to the local shop to get a paper and some cash before making my way to the surgery. I enter reception and the usual person on reception is obviously fielding a tricky call. Any telephone conversation from a GP surgery that contains the phrase “it must be in the next two hours” is not one to interrupts, however one of the other reception staff asked me what I wanted. I said I just wanted to make an appointment to get my B12 up-to-date as it had lapsed due to all the other stuff that was going on for me. She promptly consulted her computer and conformed my name and date of birth (I would dearly love to know if there is another Roland Woodward that was born on the 6th of July in 1948. Any thoughts about parallel universes can be left at the door, I’ve not got time to argue with that nonsense.) She looks up from her computer and asks “Are you available now?” I am taken aback for a moment and say “Sure”. I take a seat and begin to get out my newspaper, but before I can my name is called. I am whisked in and before I know it I am hearing the words “sharp scratch” and I am one armful of B12 up. Not only that I am clutching an appointment card for March for my next one. Now that’s efficient.
So with an unexpected fluffy cloud on my right bicep I leave the surgery feeling like a bit of a winner. In celebration I head for the village cafe and have bacon and sausage baguette and coffee. This all consumed as I complete the crossword puzzles in the paper. I get home where my partner is working from home. I rescue the Christmas tree from outside and bring it in and set it in the cast iron Christmas tree stand that has been part of our Christmases for years. I had time to remove its netting and put water in the stand. It can stand for a few hours and return to its original shape before being decked.
My partner and Leave early for the hospital due to the fact that we anticipate a long wait to get in to the car park, which has been our usual experience. We drive straight to the car park in record time and drive straight in. We are an hour early! We chat for a while and then go to the oncology building for a drink. While there I fulfilled my promise to buy raffle tickets if my platelet levels went up, which I told the nurse who promised me more platelets. All this is tragically superstitious but it felt somehow important to keep my word. I gave the nurse on poison reception my appointment card and we waited outside for a while.
It was not long before I got called in and settled into a chair. No recliner for me this final time, I guess I am a rugged participant now, evidenced by the lack of wobbly veins and adequate blood flow. So I am soon hooked up to my black bag of poison and I settle into eating chocolate bars and drinking lucozade. My theory is that my body knows that to is having poison pumped into it and reacts with a certain degree of shock which lowers blood sugar so I try to load sugar into the system to counter act this. I think it works, and if it doesn’t it’s the only confectionary that I get in my current diet.
I sit reading my kindle, while my partner does puzzles and falls into conversation with the man in the next chair and his daughter. Before long they know my history and that is my last session. “Am I going to ring the bell?”
I ignore the question and let the conversation go on. That bell is a pain. I am not against some symbolic signal of achievement for those that want that but I am offended by the arguments about hope for others and the rainbow and the words that go with it. I know what’s happening to me and I know this is no end and to “survive “chemo is not for me significant. It’s not something I want to proclaim to the world and particularly the other people in the room who all are undergoing their own journey in their own way and doubtlessly wrestling how to make meaning out of their experience. A ritual bell is just that and trivialises the humanity of those that are cancerous. I did not ring the bell despite the man’s daughter asking for just a little ding.
Next stop the gym with my new set of stab sticks stowed safely. We sit in the gym lounge and indulge in drinks and a mince pie waiting to see if my partner’s personal trainer is going to show up. Eventually my partner goes off to train and I delay a bit to finish my drink. I eventually get changed and get up onto the gym floor. No cross trainer so I climb onto a bike and swap my Fitbit onto my ankle from my wrist. A tip from my partners trainer as the fit bit does not pick up cycling on a static bike in the gym but it will pick it up if on the ankle. I was dubious but at the end of the hour I checked and found it had registered all the strides. I had attained my days 10, 000 steps and burnt another 551 calories. A brief stretch out and then off for a shower. Feeling oddly refreshed I sit in the gym lounge and finish off my 750 mls of water in an attempt to get my 2 and a half litres of fluid down me to help move the poison through me. I am having a hot flush and need to sit tight for a while to cool off. My partner arrives and we wait a few minutes before heading off home.
Beans on toast for me so that I can take my next dose of block steroids and then I am off to write the blog. I’ve not got the energy or inclination to get into the loft to get the Christmas tree decoration boxes down, that will have to wait till tomorrow. There are still some Christmas organising to do, but right now there is a bin to go out for tomorrow’s collection and sleep to be had.
