So here we are at a Saturday and I wake and do my mental check over.Yep everything that should move does, no headache, no temprature, not feeling sick and the usual slight twinge in my big toe. Some time ago I dropped a ten kilo weight plate on my toe in the gym. My nail turned blue and bruised for a long time but finally subsided. However I think it over reacted and in a fit of trauma and self protection grew to a thickness that an elephant would be proud of. So since that time I’ve been manageing it with the result that ocasssionally it gives me a reminder. Today was one of those days. The pidgeon egg in my midriff from the last injection had subsided a bit so all in all it looked like I’m ready for the day.
Saturday is also what I call “junkie day”. It’s the day I fill my pill organiser, which is my first task of the weekend. There is something about finding all the littleboxes empty. It means I’ve taken everything I am suppossed to. I carefully fill all the required boxes and feel reassured that no matter what happens now my pills are ready for me and if it goes really pear shaped my partner will know what I’ve taken and what remains to be taken. Of course my pill box is a rainbow.
Chores and weekly planning done my partner and I head for the great outdoors. We take ourselves off to a local park and walk like many others in the sunshine keeping a careful distant between us and the rather fine deer that live in the park. At this time of year the bucks are sporting full antlers as they move into the rutting season. Apparently its possible to go on a “Ranger Rut Walks” . I’m slightly interested in what these walks are aiming to do but suspect that the deer are not too enthusiastic about them. The serious bit of this exercise is the effort to keep fit and to try to keep my body working as well as possible. I have this belief that if I keep making the effort my body will repsond by doing its best for me. Its a trust issue. Having recieved my celebratory vibration from wrist Fitbit to tell me I’ve done 10,000 steps we head for home.
Home of course means more chores, so fruit and veg are bought and a new loo seat fitted before we drop into a the routine of cooking, eating and Saturday night TV. Strictly of course. Match of the day of course. Tomorrow sees the challenge of the gym.
Last night was on the grim side as the effects of being poisioned kicked in. It felt as if my legs had been pounded by a sledgehammer and they ached mightily. It came as a bit of a surprise as I thought I was doing alright. I lazy evening of television culminating in England beating Italy at rugby, no surprise there,then off to bed via the meds. My legs ached and burned and I did not know what to do with them, I was tired but sure as hell not geting to sleep. I know my Fitbit sleep score was going to be poor in the morning and it was: 69 Fair. Fortunatey my partner, with great anticipation, had bought me one of those gel filled mats to cool large pet dogs down to counter my hot flushes. It saved me. The delicious cool mat enveloped my legs and eased them enough for me to drift in a out sleep.
Normal wear and tear!
The last time I saw my oncologist, a man who bears the name of someone who made a pact with the devil, but I cann’t hold that against him, he showed me my bone scan. There were the three spots on my spine and the bit around my hips, all to be expeceted with a diagnosis of “advanced” cancer, however when he looked at my legs he stated “that’s just normal wear and tear.” Its the normal wear and tear that burned like hell last night. If thats the case I think I am probably stuffed. I shall be clinging to my gel mat from now on.
My new best friend for the normal wear and tear.
A diversion, Swedish postal service.
In an unusal fit of organisation I managed to find out what my son wanted for his birthday, furthermore I actually managed to order it, and arrange for it to be delivered to Stockholm. Not a random location as he lives there with his partner and my two lovely grandchildren. Result I think and then the kind Mr Amazon sends me a message. “Post DK couldn’t deliver your package”. My son has heard nothing from Post DK. What is going on I ask myself. This is not the first time swedish postal services have created problems. For an evolved nation you think they would manage to have a reliable postal system but it appears they have never been able to get to grips with the concept. I have a theory. Have you ever looked at a map of stockholm and the surrounding country? Its all ponds. Say no more.
The rest of the day
The rest of this day has been focussing on the ordinary. The simple things like taking my drugs, self injection, and having a bath before I begin to attract foxes and badgers. It takes an effort to make myself go out and do things, like visiting a garden centre, buying clothes and some low level gardening, but mostly at the moment its getting my head around whether I will sleep tonight and if my legs will burn, and of course what am I going to do about my sons missing birthday present. Tomorrow, its time to go to the gym and burn some of this fat off of me and some of the poision out of me.
In case you were wondering this is my writing shed in the garden. It is my retreat space were I shelter from the usual pressures of the world and of course the family dynamics when they get a bit prickly. This usually is a result of me trying to impose my obsession for order and tidiness in the home. I found it indispensible to have a space in the open air where I could see my garden and let nature do its best work on me. I often get distracted by the butterflys, bees, and next doors prowling cat, Bumblebee, who appears to be a prodigious hunter. I’m fortunate to have this space but I owe the inspiration for this to Vita Sackvile West and Virginia Wolfe who in their own ways created garden spaces in which to write. It is also the space where I have read most about cancer, end of life care and what I face in the coming months.
I like to to keep some things close to me when I am writing and working. One recent present to me from a friend and co author of a recent conference presentation is opposite. It makes me smile and reminds me to keep things simple. It also reminds me of a beautiful installation currently showing at the Yorkshire Sculpture Park (YSP). It is Kimsooja’s To Breathe installed in the chapel. Its only there till the 29th of September, but worth the effort. But the YSP always is.
Yesterday I left the blog with a picture from a friend, which had been sent to me in response to my diagnosis and blog. At that point in the day I was flagging and the household routine had kicked in. The prosaic tea to have, fish and chips was easiest given that my partners singing teacher was due to arrive for her weekly at home session. Originally a present from me to support my partners wish to be able to sing and one day sing with others. It’s an ambition that is getting closer. So I was left with the evening to fill before my end of day blog session. Fortunately Mr Amazon had delivered an adult jigsaw. In reality a chiar that turns into steps. We thought this was a good idea when we started clearing out cupboards we could not reach and teettered periliously on old wicker chairs. An interesting challenge which took longer than expected and ultimately made me forget to take my night meds, that, and writing the blog, but it was a successful completion. We can now rummage through our storage without falling to the floor. The last thing I need right now is a broken bone or to develop a habit of having “little falls.”
The Jigsaw puzzle
The completed Chair
Chair magically transform to steps,Genius
Today starts well, dry bed, and some uninterupted sleep although I immediately check how I am. Its a sort of heads to toe check to see if I can feel it all and move the bits that should move. Mental checks are a bit more tricky but I feel okay, in fact very okay. As Deborah James says in her book F*** You Cancer: ” -and okay is good- hell, okay is bloody brillant!”
So today is a normal day. That’s another self injection, remembering to avoid the waist band region, taking my meds, paying attention to my dental hygene and waving farewell to the old double bed as the Heart Foundation take it away to a new home. My partner suggested a super king size bed so that we could keep onsleeping in the same place. More acurately she could sleep while I hot flushed like a human Chenobyl. So far so good, it seems the extra space means she can sleep and I can steam quitely far enough away so as not to disturb her. So today is get the injection done and get on with it. Doubltless I will let you know at some point how it goes. I am aware that I live in a state of pre-emptive anxiety, expecting at any moment to be unexpectedly gripped by a chemo side effect. I find it undermines my confidence but at these times I just grit my teeth and try to do it anyway. I think my fear is a very British one. I just do not want to call attention to my self. The thought of flying off the back of a gym machine and needing to be assisted is not a pleasant one. Suddenly going wobbly in public is definitely not an experience I want, but nothing ventured nothing gained. The support number is in my phone, my appointment card is always with me, I’ve memorised my nhs number, what could possibly go wrong?
One thought that keeps returning to me is a dyslexic one. This is a struggle to do and I know I could create and copy/paste in another media in order to spell check the material, however it begs the question how WordPress have got into 2019 without adding spell checking to its creation suite?
Today started well with a walk to the village cafe, via the chemist of course to collect the latest prescription, to have breakfast with my partner. We had baninshed ourselves from the house due to my eldest daughter undergoing a skype interview for work. Having eaten, taken drugs and completed a crossword I headed for the barbers. My intention was to go No.1 all over in an act of chemo side effects defiance. “Get in first” was the thought. I chickened out and went for No.2 as a compromise, after all it is still quite warm for September and the look goes quite well with my linen Peaky Blinders cap.
As yesterday, I became more clothes conscious as time came close to leave for my first chemo. Nothing too formal but casually elegant and practical, after all they will need access to my arms to shove needles and canula in. So in the end it was cargo pants, lots of pockets, an ice hockey training top which is loose with big arms. I have found these to be good for those hot flush moments when I can circulate an air flow over me by jiggling the neck of the shirt. Of course the linen jacket, even more pockets, topped it off.
Loading the survival satchel up was the next task. Here is my list of essentials for my first trip: Phone obviously to record events and to make calls to the plumber, notebook for observations, pens, refills, book to read in abscence of kindle, steel drinking straw (so green), fan, old fashioned collapesable type hand operated, spare pair of pants (clearly a confidence issue), a Chilly bottle of cooled water and a packet of M&Ms and half a bottle of CK One. Finally the essential i pod. Music to make anything bearable. I figuered that if things got rough I could retrieve the Kendal Mint Cake from the boot of the car. All of this preparation was of course me keepng my self busy, trying to stay in control and containing the rising anxiety.
So far so good. My partner drove me to the hospital navigating the tortuous one way system to the visitors car park, which was full. We edged our way to the entry constantly watching the clock as it ticked closer to the appointment time of 2:15. We finanly got a space and gathered our survival bags and headed to the oncology suite. Full of “I can do this” I proffered my apointment card at the reception staff who took it, looked at it and told us to wait in the waiting area. “Youre be called”. How cheery was that for a first timer.
We found seats in the waiting area and settled in. We expected to be called quite soon, after all, yesterdays induction group had pounced and given us today as a starting date so we assumed there was some sense of urgency. My Fitbit nudged me and told me I needed another 169 steps to reach my hourly goal of 250 steps, so I dutifully walked up and down the corridor till I reciered a congratulatory vibration from my wrist. My partner was doing the same thing which seemed to be of interest to others waiting to be called. The next time my Fitbit nudged me I realised that I had been waiting to be called for over and hour and a quarter past my appointment time. My delusions or fantasies about urgency quickly left me and I settled down to read. And then I was called.
“Just go and sit in that orange chair that’s empty down on the left please.” I did. Unpacked the essential survival items onto the over bed tray and waited to be administered to. There were eight or nine of these chairs around the room, with four comfy guest chairs in the middle of the room. By each of the reclining chemo chairs stood a small machine attached to adrip stand, rather like metal flamingoes. Each treatment station was numbered. I was in lucky 13.
I knew that as I am not superstitious that what followed had nothing to do with being in poisioning chair number thirteen. A couple of chemo staff came to check who I was, name and date of birth, whether I had any allegies and that I had taken my steriods for the day. At induction I was lead to be believe that I would get the third degree via a huge checklist of questions, but no such luck, clearly being behind and needing to get people underway the the short version had been adopted.
So the chemo person came to put a canula in the back of my left hand, a procedure I was well used to from my March experiences of being in hospital in Jamacia, where they seemed to be able to quickly and neatly slip them into my veins with out hestitation, repetition or deviation. Not so in the less sunny climes of Leicester. The first go was aborted on the basis that,and I quote, “had a wobbly vein”. A classic example of blaming the patient for a medical procedure/drug not working. Not a hint of “I’m sorry I seem to have fucked this up”, not even an “oops I’m feeling a bit rushed today, sorry”. No it was clearly my fault, me and my wobbly vein. Second one no better. This time I was at fault because my vein would not bleed back. By this time I was having thoughts about the Merchant of Venice and whether part of me was happy to give up my flesh but I’d be damned if they were having the blood as well. But again my fault, I’m just not a bleeder. Chemo person wandered off leaving me with two white fluffy balls stuck to the back of my hand to find the nurse.
Nurse arrived, a clearly experinced chemo person who if pushed could embed a canula from twenty feet with out the patient flinching. A true master of the vampire skills. I was right, he was excellent and with a flick of the wrist the canula was in without even the “slight sting” comment that is usually made. So there I was all ready for my first bag of poison, which was duly hooked on to the drip stand in its black plastic bag, because its UV sensitive. Even the poison has vampire tendancies. The tube was threaded through the driver, buttons pushed and off we go. So far more or less so good, apart from being late and having two minor clouds stuck on my hand. The nurse returns and says “I’ve got your injections”. I think “what fucking injections, this is news to me” and actually say “Are you sure they are mine”. He assures me that they are part of the treatment and that I have to self inject five times post chemo day by three days. He assures me it is easy. I start by pointing out that this is all news to me and not what I consented to. I pointed out this was not something I was expeceting and was somewhat taken a back. We went back and forth but its difficult to argue coherently when hooked up to a poision bag. It felt like being back in Jamaica when the blood bank refused to release blood to me as I was not a high enough priorty unless my partner paid in a unit of her blood in return. I dislike being held to ransom by the medical profession. It feels like once they have you they can expect compliance and at the end of the day shroud wave at you with “if you do not do this you will die or your treatment wont work”. So in a couple of days time I will be jabbing away at my stomach’s fatty bits and injecting myself. Another skill like cathertising yourself that does not sit easily in anyones CV.
My very own sharps bin: DANGER
To top this off the same nurse then produced yet more steriods for me to take every day until my next chemo day. I had half expected this, as this had appeared in some of the information given to me, unlike the block dose that had been sprung on me at yesyterdays induction group. I just wonder what is next. At some point can I expect divination of goats intestines or the pointing of bones. Perhaps a little rune casting or tarrot cards to see how its all going. The final free gift to arrive only a few minutes later was a bright yellow mini sharps bin for my spent needles. Prominent on its side was the word DANGER. All I could do was laugh.
My partner went off to purchase a cheap car park pass while I plugged in the ipod and turned to Frank Zappa for solice, Hot Rats and Willie the Pimp was just what I needed whilst reading Robert Macfarlane’s Underland, a magical book that I would urge all to read. My partner returned triumphant after having had the fore thought to ask the staff if there was a form she needed to fill in. There was and it had to be signed by the unit staff, so lucky she asked as no one had volunteered this information. At this point we had a brief chat with the man in the next treatment station about how he got a blue badge so that he can park for free in the reserved blue badge car park. Apparrently if an Occupational Therapist does a report you can get one, it had saved him a fortune. Useful conversation. When he found out this was my first time he explained that I would be fine to start with but by the third cycle it would hit me and I would become lethargic and do nothing. The conversation kind of dwindled at that point, I suspect it was not the kind of thing I wanted to hear and reverted back to Frank Zappa. As I psycholgist I should have realised earlier why I had chosen Frank to listen to. Tonight as I write this I remembered that Frank died of prostate cancer. I love the uncoinscious and how so much of what we do is driven and guided by a process that we are not aware of at the time. Its always so difficult to stay mindful and to ask the questions of why now, why this? I guess I am as vulnerable to the unconscious as anyone when I am trying to deal with my own anxieties and trying to make meaning of my universe in advere times.
My poisioning comes to an end and I get a quick saline flush. I am unhooked, canula out and I am asked if I have questions. I ask if I can go to the dentist on Friday to have a filling repalced that I have lost. No is the clear answer, you must talk to your doctor. We gather up our survival kits and the goody bag of drugs and sharps bin and head out. I dive into the toilet and in the mean time my partner chats to the nurse about dentists. He advises that if I can get it done tomorrow before the chemo depletes my white cells thats a possibility. Its either that or waiting till the very end of the cycle and going the day before I go to see the doctor. We thank him and leave.
On the way home we drop into the dentist and manage to negotaite with the reception staff an early appointment for tomorrow morning, they could not have been more helpful. So I have a fun day awaiting me.
Back home I unwrap my Amazon parcel of all the things I ordered before the end of yesterdays induction group. So I now have hand sanitizer, childrens tooth brushes, a litre of mouth wash and an” in your ear “thermometer, which I could not resist trying. Hurray my test temprature was well below the dreaded 38 degrees.
I end my day cooking curry for the family, taking more drugs, finishing a box of maltezers, drinking three pints of water, watching TV and then settling down to write todays blog. I’m tired and my dyslexia is having a field day. I have yet to get spell check hooked into my system. I am aware that at the moment this blog is all words when my natural urge is to include pictures and pretty things. These are skill I have yet to learn but I hope to soon be able to do more for all of you who take the time and trouble to read my journey. Please feel free to comment, make suggestions and to share this blog with anyone who you think might get something from it. Good night.
Today is day 77 since diagnosis and today is the day I went to my chemo induction group. I know it is foolish but I found myself having a bath and getting out a suit and tie, determined to look okay, regular and being seen to make an effort. It made me smile at myself and reminded me of two things. Firstly the Danish Labour party leader, who I think became prime minister, who when challenged by a comrade about the message that wearing designer clothes and looking like a model gave to the working class, she reply instantly, “We can’t all look like shit”. The second thought was of the advice given by Deborah James in her book F*** Cancer: How to face the big C, live your life and still be yourself. She gives a vivid account of living in pyjamas and getting smelly until a friend got her showered, into clothes and out of the house. She is very clear that for her putting on lipstick and high heels definitely helped her to cope. I may not be up for lipstick and high heels, at least not yet, but I get the sense of making the effort and being kind to myself. So thank you Deborah, you helped today.
I arrived with my partner at the appointment time and sat with several other couples in a waiting area until the nurse called through to a small seminar room. A room that the nurse at one point explained had been “lavendered” in response to a service user survey that had noted how drab the environment was. One wall was an entire landscape of lavender in bloom and vividly purple. I could understand how that might be difficult to live with if I had to work there day in day out. The nurse was a lovely person who smiled and told us all that we were going to get her talking to us a group, ten minutes as individuals and of course our first appointment dates. She also informed us that two people in the group needed to have up to date blood samples taken. We looked at each other and wondered who the lucky two were. It felt like a form of Russian roulette.
The nurse handed out the letters for our GPs with our first appointment dates on them. Firstly mine said I was due 21 cycles for six days each, which was a bit of a shock until my partner pointed out that it had been filled in wrong. Not a confidence booster, but by then the fire alarm had started up and the nurses where not sure if it was real or not. The nurse continues until it became came clear that the alarm was in radiology down stairs. “That’s fine” said the nurse “its the people down stairs burning, we will carry on”. Thankfully the alarm stopped after a while leaving it to the imagination what mayhem had occurred in radiology.
The second shock was that my first chemo appointment is TOMORROW!
That was not in the plan. I am thrown, I had plans which did not include being poisoned, at least not yet. I coped as usual by taking copious notes from the talk and noting all the advice and the accompanying shopping list that went with it. Before we saw the nurse for my individual ten minutes I had ordered an “in your ear thermometer”, bamboo soft children’s toothbrushes, several litres of mouthwash and bottles of hand sanitiser. Thank goodness for Amazon prime is all I can say.
We went to see the nurse for our ten minutes after having taken advantage of the free coffee and biscuits. You know it serious if the cash strapped nhs lay on refreshments. This was a quick whizz round the ward with its rows of recliners and drips, reminding me of the dialysis unit I had spent sessions in during a three week period in Jamaica in March this year. The difference was that this felt more industrial and battery hen like, but that is a result of the huge need the service is trying to fulfil.
Nurse had one more surprise for me. I asked about the steroids I knew I was going to get and was expecting to have to take a pill a day. She rummaged and came up with a box of 28 Dexamethasone. I looked at the label it said boldly, “Take FOUR tablets TWICE DAILY. for three days starting the morning of the day before chemotherapy”. The alert amongst you will have spotted that I had already missed my first dose. Well this is a fun start thinks I. We quickly negotiated a speedy first dose and one for the evening.
We walk out to the lift and descend to the ground floor and note the chocolate and drinks machine, the Macmillan information area, including a wig and head wear parlour and the fruit stall out side the oncology building. Home, via a quiet meal and my first dose of Dexamethasone, where I scamper off to the GP surgery to hand in my letter , book my next testosterone killing injection and provide some dosage information so that I can reorder electronically.
So I return home not sure how much of an influence the drugs are having on me, stopping on the way to get a paper ,the largest box of Maltesers I could find and to write this. Priority in my life now is to drink two litres of water a day, carry on my life as normally as possible and not to panic.
Tomorrow is the start of the consequences of my decision to have chemotherapy, it is the real start of the journey. I plan for the worst and hope for the best, but will be really miffed if there is no fun along the way.
