For those that wondered what happened to my waterboard mole hill and trench, the above pictures are of what is left. A new mains water stopcock and a neat trench scar to show where they renewed the pipe to the street main. I can now sleep peacefully in my bed knowing that if a pipe bursts I can at least turn the water off.
So I woke this morning with a niggly headache. The sort of headache that only warrants one paracetamol, not the sort of headache that just makes you want to destroy the world or act out your favourite Rocket fantasy!
That Rocket headache that makes you want to destroy the world!
Having dealt with the niggly headache I down a bacon sandwich and coffee and march off to the GP to have my bloods taken. Once again I have barely booked in than I am called. This nurse, not my 21 day injection nurse, is also very good and has the needle in my arm in a trice. A couple of dextrious flips of the syringes and I am done. I do as I am told and apply pressure to the fluffy white cottton cloud on my arm while the nurse labels my blood and tapes my cloud to my arm. Now I will wait till I can see my results over the internet and be anxious as to whether my PSA level is up or down.
My fluffy white cloud taped to my arm for safe keeping.
I pack my bags ready for London and Kew Gardens,which I am excited about, however I realise that I have to fill my drugs wallet for the week to come. I count pills into small cubes of gayly coloured plastic noting that Monday will bring “he who has made a pact with the devil” closer and the start of cycyle 3, which of course means block doses of steriods followed by five days of self stabbing. Best not to get ahead of myself and focus on something useful like making sure my camera is ready for tonights illuminated glass art exhibition. Expect lots of pictures later on and in tomorows blog.
My weekly chore, my rainbow of drugs.
We pack the car and head for London, stopping once for a comfort break and a gratutious bacon roll, before arriving at our Premier Inn just across the way from Kew Gardens. We book an early dinner and retire to rest before this evenings outing. I set to on the blog and have to up grade my wifi in order to upload pictures, so as I said earlier, expect a lot of pictures soon.
Just returned from Kew Gardens and our walk through the illuminated glass art sculptures. I’m tired so I am not going to say much just show you some of the beautiful things we saw. Sometimes words are useless and this art work proves it.
This stopcock should now be nestling above my currently dysfunctional one. Obviously it is not, due to the discovery that the water suppliers street stopcock is not functional. So having thrust his arm deep into the pavement to no avail my plumber waved me farewell advising me to ring the water supplier, whose responsibility it is to maintain the street stopcock. I, of course, did and in fairness they replied to their free phone number quickly. What was less inspiring was the fact that they cannot come until the 27th of September, a full ten days away. So no quick fix then. Fingers crossed that the pipes hold.
Hey ho! Off to Twycross Zoo
What is there to say about a zoo apart from saying the pictures were worth it.
I am still not sure about zoos. On the one hand there is the conservation work that they do with cooperative breeding programmes across Europe. On the other hand there was the solitary rhino and a couple of singular apes who looked bored and less than thriving. I know from the experience of going to the home of some of the big animals that given the opportunity and a full belly a lot of animals will just laze or sleep. Come to think of it so will I, so its not surprising that many zoo animals do. Having said that where and animal is a social animal being kept on its own seems perverse.
And where is cancer today?
If all goes well over the next week then this time next week I will have started cycle 2 of my chemo. Between now and then there is a blood test to do and an oncologist appointment to meet. I will not know until Monday whether my blood results will have held up well enough for me to enter into the next cycle. I also have to gamble and start my pre cycle block steriods before seeing the oncologist. All of this nags away at the backof my mind. The worst thing is that I know if I progress then I will have to begin to self inject again in about a weeks time. I hate that. I tell myself that I will get used to it, but I really do not want to get used to it. I do not want my body to become medically institutionalised. Its not normal to push a needle into yourself and push substances into it. It might keep me alive longer but its not normal.
My other issue that is nibbling away at me is that I do not know what my baseline for living was. I’ve done the research and think that chemo may give me another eight months beyond what I had, BUT I have no idea what I had. So what am I adding eight months to? My CT scan is suppossed to act as a baseline against which any progress I make can be compared. What I need is for my oncologist to be honest with me and give me an opinion of what my prospects were without this chemotherapy, so its eight months plus what? Some sort of timetable is what I need, as do those around me. It would be like having a target to beat, just like having a predicted arrival time on the satnav to beat on a journey. Of course the aim in this case would be to arrive as late as possible.
There I was all pleased with myself for going to the gym and doing an hour and then my back decides to go into painful spasm. Sleep becomes a trial until I can find a paracetamol to ease the pain. So now I have a quaint combination of painful back and hot flushes. The discovery is obvious, gym and chemo do not mix the way I do them. Today has been a day of trying to make good the learning by resting and organising the tasks around me in the home.
So life is moment to moment now. It’s tasks interupted by twinges: organise the plumber, rest, write a letter, rest, get the Fitbit steps in, rest, clear the kitchen, load dishwasher, rest. Realise that I have an injection to do, raid the fridge for a stab stick and then prevaricate for a while till the injecetion has warmed up. Pinch and stab, apply plaster and rest. The day would not be complete without a visit to the shop to get a paper and to do the crossword over a bacon roll in the village cafe. Lots of Fitbit steps to be had doing this, and a bonus if there are letters to post. Finaly I cook the evening meal and wait for the working family members to return. I feel like a goldfish living in small descrete chunks, its all about now. Making reliable plans is becoming a rarity at the moment.
Everything is about the moment now.
Anticipating the night
Sleep
perchance
to dream
I find myself getting anxious about the night and whether I will sleep. I thought I had cracked the hot flushes and found a way to deal with the interuption they create. The pains in my legs of two nights ago seemed to have subsided, but last nights back pain has thrown me, so I am planning preemptive paracetamol and a carefully rehearsed morning routine to get me up and out of the door. I’ve got commitments and I intend to fulfill them. I also have a a CT scan tomorrow evening to set my baseline. It’s going to be a long day, I just need to be kind to myself and take a steady pace.
Todays the day I get to inject myself for the first time! Not something you get to say often, but I got to think about it lot over the past couple of days with of course some anxiety. I had done my home work yesterday and watched several YouTube versions of how to stab yourself. I watched several, including one where the boyfriend was doing it for the woman who could not face doing it herself. He seemed to me to be enjoying himself a tad too much. The cartoon ones seemed a cop out. At last I found one that was a real human with flab, like I am developing, who seemed to do the whole thing in the blink of an eye. I was reassured for a little while,but anxious again by bed time.
Of course life is not plain sailing and the Real World has a say in how things can get done or not. There is also my own element of procrastination to avoid the nasty deed. So there was a shopping list of things to get to aid my self injection. Alcohol wipes, guaze squares, elastoplasat and more hand sanitiser were of course required, so I trot of to the village chemist to buy what I need to complete my safe junkie set. Naturally it would be bad form to undertake a new adventre without a breakfast so I pop into the village cafe to swig berry tea and consume a bacon and saugage roll. I confess that I often do this and while away time doing the Mail easy cross word and Pitcherwits puzzle on the pretence of staving off Alzheimers, though in fairness to my self its not exactly a challenging cognative task. Today I am interupted by a call from my partner who tells me the Sainsburys delivery man is going to be early. I’m staggered, early, does that happen? Apparently it does so I am forced to abandon my brain saving puzzles, pay the bill, rembering to buy a £1 bag of charity dolly mixture. Donn’t ask me why but I must own my own air ambulance or a childrens hospice by now,no wonder I have fillings that fall out.
I return home at pace with my charity Dolly Mixture and find Sainsbury man waiting. Its relatively easy to unload and produce an incomprehensible signature on the electronic pad he waves at me along with a wad of free childrens collection cards. I think he saw the Doly Mixture. So food for the week now packed away including some new items. Frozen pineapple cubes to ward off a sore mouth should the need arise and some easy snack foods to satidfy the steriod munchies.
The full kit.
No excuses left its time to inject myself, but only after reorganising the freezer compartment and having an orange juice. So at last I take a stab stick out of the fridge and remember that I have to wait half an hour for it to come to room temprature. I remember doing this with wine, I bet this will not be so much fun. I arrange my operating space. I try to mentaly rehearse what I am going to do and talk myself through it. Time to run through the hygene routine so off I go to wash my hands, sanitise them and then begin having adjusted my clothes to allow access to my fat around my waist as per video. So I wipe down with the alcohol swab, pick up the stab stick in my right hand and pull the protective cover off the needle. It looks sharp, which I console myself is good, after all who wants a blunt needle. I pinch my fat into a crease and emulating fat man on the video quickly plunge the needle in and release the fat. Bingo, man with needle stuck in his gut, now what? Oh yes push the plunger until…. At this point I was not sure till when, I assumed it would come to a natural stop or there would be some sort of indication that it had come to an end. I continued to press and assumed after a while with no further movement I was done. I pulled it and there was a surprising ping as the spring loaded barrel retracted the needle. Straight into the sharps bin with the stab stick and then a lightening fast application of the guaze square to stem any blood flow. Nothing not even a drop. Stuck on the elastoplast and sighed with relief.
If only life was that easy. There is always something new to learn. Todays lesson is DO NOT INJECT ON THE WAIST BAND LINE! It can be sore. I won’t be doing that again tomorrow.
Having achieved my challenge for the day I retereat to my shed in the garden with my mail and see what the day has brought. An old friend and colleague of my days working in therapeutic communities has sent me a painting by herself. It is in part a response to my diagnosis and to the blog. I’ve been overwhelmed by the kind response of people to the blog and the news of my illness. This response is particularly welcome. I find a frame for it immediately and hang it with me in my writing shed. I get on with some work and then decide that there are people I owe letters to. This blogging is all well and fine but there is nothing like writing a letter to express how life is to people with whom you have had long term relationships with. So I sit and write those words reserved for the sharers of my history and those who know me best and will, when needs be,tell me when I am being crass or stupid. Or they may just takethe piss out of me when I get pretentious and up myself.
A fabulous unexpected gift which made my day of challenge well worth the effort.
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.
