Can you start drinking please?
Today is Monday 14th May, my birthday, a mild sunny morning, I am getting ready to leave home to have my 1st treatment of radiotherapy.
I looked at the photocopied spread sheets showing my radiotherapy appointments for just this week on page 1 and the next 3 months on page 2. This made me realise that my journey would be daily.
Weekends I had off. I also thought it was going to be a journey towards getting well. I wondered why the information said there was a need to arrive 20 min before appointment time. ,
There was advice in the booklet I had been given, which gently informed me, to be dressed in something that can be easily removed from the half of you that is having treatment. Perfume or body cream, not allowed: or cosmetics if the treatment was to be given to my face, which I am not.
As I was dressing, I examined my new scar gained during my recent cancer operation, I say new scar as I had some cancer connected problems and an operation to remove my right ovary when in my early 30s.
2 tumours, were skilfully removed by a whole team of surgeons, along with all the other organs or items connected with women’s reproductive bits. Also, some lymph nodes.
Along with this assortment of used, but only one owner’s female reproductive organs - I also lost most of my vagina. Interesting how I said ‘lost’, but I am certain that this ‘loss’, if it is one, may need more mental coming to terms with. For now I am curious as to what is attached to the end of this 3 inch envelope (yes, I did measure its depth) or is it just waving about as it wishes?
Joking to my friend, I said that my vagina monologs would in future be just sentences.
I was scared that my scar was being going to be exposed and treated with radiotherapy as well as bladder, bowels and whole pelvic area. I thought about other affects the treatment may have on other organs.
My tummy was very swollen and I had a tingle of apprehention if I thought someone may touch it. It felt like my tummy had been rejected by the muscles, which obviously had refused to take responsibility for supporting it any more.
Interesting facts, I knew about radiotherapy treatment. It was developed from X rays when people where exposed to radiation to kill tumors.
According to Cancer UK, early radiotherapy consisted of a single massive dose of radiation, typically, lasting an hour. Side effects were severe. In 1914, an Austrian doctor controversially suggested that radiotherapy might work better if it was given in many smaller doses.
I thought of my ganny who had treatment in 1965, I was about 9 – she took me with her to The London and Middlesex Hospital on Gower St. I watched once when she was put on a slide and trolley and then inserted and pushed into a brown and light gray tube, leaving just the top of her hair visible to me.
I was told to leave the room by the nurses and watched through the small circular glass cut out, of the door leading onto the corridor we had come in through, which, I joyfully discovered misted up when I breathed – so I could draw my name and gannys in the mist the whole time – I only did this the first time we went, other times I took a book or she brought me a comic to read while I waited for her and sweets to comfort me as well as make my teeth bad. Things like that didn’t matter in the 50s.
Overtime, her whole body became a strange mauve and brown or the skin of an abergine colour, I remember her joking to someone that she looked like she had been on holiday and me persisting with questions after I heard her say, this to tell me to where had she been and when?
She explained to me, this was a joke along with the example of Irony
Her legs and arms looked stick like as she shrank in size and she moved into the front room, as it was called it in those days, along with her bed and other stuff related to health. I just loved it on Sat afternoons we used to watch wrestling together on the TV, which you had to bang on the top if it went fuzzy or move about the room, near the TV with the ariel. She shout “ That’s It” and I would stand still and the very gently move it to somewhere else.
Now, looking backwards to 1965, and as an adult, I ask - How did she cope with the journey to a large London hospital, from Edgware after a huge operation?.
I was 12 weeks or so after my operation now and if facing a long walk to station (at least 40 mins) and then an hour or more tube journey into London – I don’t think I could manage it. I do remember her being ill alot.
Rechecking again, my bag re all the things I need – water, appointment details, parking instructions and tokens, phone etc. etc. – I concentrate on leaving and thinking about my journey and the mechanics of travelling a short drive, about 20min. Thinking about the practical aspects of a journey is a useful thing to do when you can’t concentrate. I couldn’t, and I recall feeling like this before when any of the children were ill and after my own mother’s death.
As, drove down the road I lived in I saw a quick flash of the most beautiful lillies on the left hand side growing from someones front garden. It did feel comforting as these are lovely flowers and I knew it was a sign that I wasn’t alone.
On the rest of this first, uneventful journey to the hospital I didn’t think about it.
After parking, I learnt that, tomorrows visit would be enhanced by getting the parking ticket from the machine before parking and still in the car and the best tactic to save walking across the car park twice to get ticket and again into the building.
I think I was starting to accept the need to have this treatment, It was very important in terms of my own cancer and was the major part of my treatment. The Chemotherapy that I had 6 weeks of once a week was mild and although very nasty, it was the radiotheaphy that was going to be my main treatment.
There was a certain resignation on me at this time concerning the treatment, but this was the first visit, so maybe understandable.
I was so fed up with the word CANCER.
I had heard that some people have a relationship with their cancer, giving it a name and talking to it.
I wasn’t aware that I had it for 2 years, although I didn’t feel very well and was in pain most of the time. So I had no time to think about having a relationship with either tumour or cancer or anything because once this was discovered the surgery was PDQ.
My thoughts:
Where am I on this journey of treatment, now? Halfway through?
How is this going to affect me short medium or long term? : Will I have to come to terms with some horrendous impacts?: Will my hair fall out?:
Noo that’s the chemotherapy, which I start next week, I heard that it all comes out in one go. My stomach churned. I just couldn’t think about it for now otherwise the Tears sting and burn behind my eyes.
Arriving at the cancer centre and finding the clinic easily after asking directions from the booking in desk staff – one of whom I recognised as I had worked at this hospital for about 7 years. She recognised me and we chatted briefly about the changes that had happened and who had retired and who was still there.
I walked into radiotherapy and saw a long corridor of which I appeared to have entered through the middle door. There was several small waiting rooms, all numbered. Mine was number 4.
It resembled a covered bus shelter. There were some people in this small room, which had glass windows looking onto the corridor and those not having treatment walked past and stared in as they made their way somewhere else. This was the corridor , I found out, that you were in briefly when you arrived or left after treatment, used the toilets, got your water, cried, met someone in a worse state the you, met relatives or other family members of other patients. I used to do my drinking there 6 cups of water at least. I read that cranberry juice was antinflamaty and replaced water with this and that my bowels had to be same size if possible when treatment was given. I could never eat anyway before treatment, and the one time I did I was sick when I got in.
Then it was your turn to stare back into the sealed bus shelters and look conceited for no apparent reason other than you knew you were off on your journey – not them, they were still waiting, longing to be where you were embarking on drinking.
Can you start drinking please?
I opened the double doors leading into the clinic and read the notice on the wall directly in front that I was to take a seat in the bus shelter type waiting room on my left, if I had booked myself in as being present for the appointment with main reception – I was able to enter the waiting room with a clear conscience.
I first saw a man who resembled a dormouse, like I have seen illustrated in Lewis Carol’s story, Alice in Wonderland; he was sitting right by the door. I sat opposite him, also close to the door.
The tension in the room was so strong and almost visible; I felt that I had just interrupted something. I took out my phone and started to play solitaire on it. I didn’t want to speak to anyone. A strange silence occurred.
There was tremendous upset everywhere and loud voices making everyone jump a bit when the small man, suddenly, loudly greeted a middle aged lady who came in, with a flourish and an assortment of mobility aids and other bags of stuff. Feeling like I have in the cinema or theatre when someone wants to pass you to get out if they in middle row, draw your feet in first. Everyone seemed to be in such close physical contact and it was stifferling hot and very tense.
The lady returned the greeting, they were pleased to see each other. I was having to overhear them chatting as I played solitaire on my phone, that she was near the end of her treatment, all about her bowel tumour and the operation she may be having, if the tumour has been shank enough by radiotherapy to be able to be operated on, she looked to be very swollen up. She had a box of chocs and a card with her, as a Thank You for the staff she explained.
The atmosphere in the waiting room changed from being oddly familiar as other hospital waiting areas are –to surreal - the topics of conversation was so hard to ignore. I didn’t want to become part of any of this. I could feel resignation with treatment and illness, but this talk was making me angry when I was seeking courage and trying to be brave.
Next to me were a husband and wife couple, both in their 70’s – Perhaps, married for years. Wife smiles at me, and we find a similar shared sense of humour in the chatting topics and confirm this by having to look away before we laugh – She is with, her husband, I think, he observes everything.
I wondered who was having treatment? I return to playing solitaire on my phone.
Another couple, Asian, similar age, 70’s both looked very smart and neat, and she was petite and seemed calm, He looked alert and wanted to join in the chat – I wondered who was having treatment? I am playing solitaire on my phone.
There was a 50ish year old man, who clutched a brown canvas shopping bag, as if it contained a valuable treasure. A uniformed young girl put her head around the door and said to Mr Brown canvas bag “Can you start drinking please?”
He reached into his bag and took out a bottle of reddish liquid, looked like cranberry juice and started to drink it. Little did I know that over the next seven weeks, this request would become music to my ears, a profound request – further evidenced by a direct look at you – to reassure you that you were the intended audience for this message. A look direct look into your desperate eyes, with the words CAN YOU STAR DRINKING PLEASE?
You knew at this moment that you were on your way – treatment had started – you knew that beyond all reasonable doubt you would be having your treatment in 20 minutes time. Joy of Joy of Joys. Yipeee! Then you could go.
Can you start drinking please?
The arrival of an older lady, who had some difficulties breathing and settling into a seat, raised the tempo of the whole atmosphere, she started a loud conversation with the small man and the lady with the chocs and card – they had all met before.
A young Asian man, no more than 25 sat quietly, but also listening to the talk. It was difficult not to listen, only way out, was to leave the room. The combination of the heat in the room and the tension, and now this noise and topics of conversation - was unbearable. I think I was fearful.
Their conversation was frequently interrupted by a loud clatter of sticks, which seemed to fall on the floor, loads of excuse me’s and sorry to everyone. I found out the friendly dormouse was called Barry.
Although the conversation was between these 3, it seemed as if they all were trying to draw you in, if not by eye contact, which was directed at all of us, while they were talking, by their comments about bowel movements, frequently of wanting to wee, situations when they had wet themselves and what they were going to do when treatment finished by way of a holiday. On the subject of holidays and partners friends or otherwise - The older lady, breathing heavily asked Barry “was he married?” We all drew breath.
I was spilt between thinking her rude, but I felt a twinge of also wanting to know myself – Yes, I am nosey as well. No, he wasn’t, he replied, but had been twice, “I always seemed to get a divorce when I get made redundant, he mused. “My last wife accused me of having an affair – when I was in fact working extra hours – I was saving up to taken her on holiday – but she told me she wanted a divorce.
“What did you do?” We all wanted to know, but couldn’t say out loud.
“Oh I took her on holiday, to Spain – then she divorced me.” Explained Barry.
“It couldn’t be any worse, could it?”
This line – ICBAWCI for short – note this is text friendly. Is useful to demonstrate to people your acknowledgment that some experiences in life do progress into a complete melt down of an already difficult situation.
The middle-aged lady with the cards and chocs – turned to me and offered me a bag of sucky sweets – would you like a sweet? She asked – What kind of cancer do you have?
Me – “no thanks” with brief smile, to mask the shock horror feelings –“well none, apparently” I replied.
“My treatments nearly over” she said. “It’s to shrink the tumour, Then, I may have to have an operation”
I LEAVE THE ROOM
Can you start drinking please?
I can see Anger and Resignation here. Why? I also think this process is going make me exhausted. I am now officially a member of the cancer patient population, is there a stereotype?
Resignation, I will have to accept that I am now part of this group for now. I must be brave and positive – and think about other people worse off than me. There seemed to be a pecking order in the waiting room in terms of cancer – What type? Where is it? What treatment you having? I will keep my cancer to myself, I think.
I don’t want lots of intimate details revealed in public to complete strangers by questions not normally asked or answered? it crossed my mind that having most of your vagina removed and telling people this, was not perhaps what YOU would want them to know, before they knew your name. Its useful for shock affect, I have found.
A male radiographer opens the glass door leading onto the corridor from the main part of the clinic behind the waiting room – he was looking for me. I was in the corridor, by the water fountain.
“Mrs Baker” I looked at him “Can you start drinking please?
I had 3 levels of emotion – scared, scared and scared.
6 cups of water and 20 min later “Please come this way” said the radiographer as he led me into a large room, where the machine was. As I walked through, I noted that the door was at least 3 feet in thickness, staff friendly, but surface – tempted to say something outrageous – the hardness of the table – the dimness of the room, giving me a heightened sense of hearing, could hear fluttering noises as staff were moving about or leaving and entering the room.
As I lay there, I felt corpse like, as demonstrated in crime dramas in autopshy scenes.
I was gently moved into position – just relax, I could hear lots of numbers mentioned – “I have 240 here but a 370 there” I was silent and kept still.
What is this doing to me? Will it make my hair fall out?, no that’s the chemo.
I put out my tongue at the penetrating sound of machine, I pretended I was having a sunbed, watched the laser light show on the ceiling and noted that sometimes the huge disc of glass that hovered and twisted above you also contained a camera, making the loud click that you used to get when you used an old one.
I thought it best, before I jumped up or over and ran out of the room – no chance of that with 3 foot thick door between me and the rest of the world - to start to count backwards from 500 – got to 279, when I heard talking, which became louder as they entered the room – it was over.
An odd mood of euphoria set in as I walked back to car – the process was over and I know what to expect practical level next time.
Rest of the day
On my own – feel ok – want to forget about it. Keep busy, cant concentrate and when thinking about what it’s doing – feel sick – but don’t want the cancer – tongue out at machine, was helpful.
Can you start drinking please? Part 2
I have physical symptoms now and am very sore pelvic areas. Inside my 3 inch vagina it is bleeding and when I do a wee it burns and stings and I cant do a wee even if I think I can. My whole lower half is hot and I feel so exhausted. I have had to ask someone to take me a couple of times and wait for me as I haven’t been able to drive myself, which I prefer to do. This treatment is very slow in showing you its power. You go about 2 weeks in with very little side effects and then it starts, but you then realise that after the last treatment you will have on-going worse side affects for at least a month, but then it calms down. This is where I have to get.
I used a bag of frozen peas once between my crotch and bum – It was so hot and just burning and burning. Next day I told the radiography staff that this was better then frozen beans and less poky. She said she would tell other ladies having similar treatment about the peas and explain why?
Being so sore and having problems with bowels bladder and a strange swollen hand that hurt, I was getting to hobble when walking and very bent over. I was having Chemo at the same time so this experience was impacting on me as well. But once steroids kicked in from that I was fine. It was a whole day and about 4 bags of stuff say over 10 - 12 hours and the day after the day you had it made you feel like you had real Flu or something more serious.
I realised I was on a journey for all parts of this cancer treatment – So was my ganny – but I had the slight advantage over her of better treatment delivered to the cancer only bit, and – only some bits that were near the cancer and not to the rest of my body, like Granny.
One to cross off from the timetable, must do this when I get home, wonder how I will be by July 6th.
