Womanhood

Last summer I participated  in a secret project by the artist Laura Dodsworth. The project involved photographing 100 vulvas and interviewing the women about their relationships with them. Laura has previously published books with 100 breasts and also 100 penises. It covers sex, birth, abuse, pleasure, virginity, miscarriage, sexuality, gender, cancer, FGM and a variety of other topics.

 

The Guardian article ‘My vulva and Me’ about the project was published on Saturday went totally viral after a hapless chap called Paul Bullen decided he knew best and decided to comment ‘the correct word is vagina’

Within that article is extracts from the book and also a collage of the 100 vulva pictures. A BBC article ‘Why I photographed 100 vulvas’ also contains similar with a collage of the belly button to thigh shot which also accompanies each story.  Real women with bellies, and stretch marks and pubic hair and wrinkles. In a world where porn is so readily available to everyone it’s refreshing to see.

Its been a very strange, somewhat vulnerable, yet exciting few days watching these articles explode over the Internet.

My copy of the book arrived today and I could not wait to read the stories contained within. Really powerful stuff. Whilst my published story is predominately about my cancer I can relate to so many other facets in the other ladies stories.

The over arching theme of the book is that, as women, we have to shake off the shame we feel about our bodies. As humans even we just need to give ourselves a break.   The two main drivers for Laura to take on vulvas as her 3rd project was reading about FGM and the rise in labiaplasty.

 

On Tuesday 19th at 10pm on Channel 4 a documentary about the project will be aired. I’ll be watching for sure.

If you buy the book and know my story you’ll know which one is me. Does it matter? I thought it really did. But now I don’t. It’s the end of the story. The full stop of the last 5 years.

In January I reached the 5 year clear milestone. The 5 year statistic of cure. A significant marker for any cancer patient to reach.

I am no longer a ‘cancer patient’.

 

I’m me.

 

 

 

 

 

 

 

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Dodged a Bullet

All clear today.

Got called from waiting room and told I was seeing Mr H, who is the cancer ENT guy, not the other guy I’ve been seeing. Heart dropped like a stone. Thought ‘Fuck. This is game over’ but it wasn’t. Biopsies clear, CT showed nothing of any significance, have an open appointment for next 6 months if symptoms progress. Can’t actually believe it, in fact I don’t . But I must because this little escapade has robbed too much of my time and energy. I’ve bailed out of lots of things that I just did not have the mental capacity to deal with. Things that I really wanted to do and be part of. How DARE you take more away from my life?

I ticked so many boxes for throat cancer it really wasn’t funny. I had decided that I probably wouldn’t of had treatment (It sounds truly horrendous) and would of just lived my life until it wasn’t worth living anymore. And then what? Take my own life? Isn’t it time to have an honest conversation in this country about the right to choose a dignified death?

Within the space of 5 days I had my dog put down, a throat cancer work up commenced and my son was referred to an ophthalmologist as a lesion had been seen on the back of his retina during a routine eye test. (Lovely GP fast tracked that appt so I could tick that worry off the list- all good, no drama)  No wonder I lost it. It’s been the most unbelievably stressful few weeks. I’ve been to Musgrove so many times in the last few weeks I’ve lost count. My anxiety has been through the roof. It’s a nasty and very scary place to be and I’ve been a nasty and scary person to be around. Having to go through the examinations, the scans, the appointments, the waiting, the well meant but insensitive comments, all over again very nearly pushed me mentally over the edge.

I’ve said it before and I will say it again. The psychological aspects of a cancer diagnosis and treatment take far longer than any physical scar to heal. They linger and even if you feel you have dealt with them all, processed it all, moved on from it all, they can come crashing back at times like these. It reminds you how fragile you are. How easily you could break. Can you do it again? Can you muster the strength to plough through again? Can you put your loved one’s through it all over again?

I’ve held on to a very slippery pole for the last few weeks. Knowing that if I let go it would be game over. Knowing that if I managed to hold on it could still be game over. When my hands slipped some very wise people propped me up. Some wiped the slime off my hands so I could get a better grip for a while.

The ride has stopped. I’ve let go of the pole. I’ll be dizzy for a while yet.

 

 

 

 

 

 

 

 

All a bit unfamiliar.

Going to have an EUA at a different hospital. Quite weird. Like going to a different supermarket or hairdressers. The general process is the same but of course it’s all slightly different. No familiar faces this time.

Taunton has a day surgery unit where I’m guessing is where the day surgery patients go! The waiting room is nicer than Bath, far smaller, far more homely, windows (I don’t remember Bath any) But you don’t stay in this room for long. Soon you are taken through to what to all intents and purposes is a ward, with chairs instead of beds in your cubicle to sit on. (Obviously you will be delivered back in your bed after) The usual chats with various nurses, anaesthetists, consultants etc. as only a curtain separates you from the person next to you are able to hear everything. At Bath you are taken off into a private room off the main waiting room for these chats. No one had anyone waiting with them, maybe as it was day surgery most people don’t feel the need to have someone with them, but I wonder if i’d wanted someone with me it would of been allowed. You did already feel like a ‘patient’ before your op, sat in a ward. Maybe that’s just me. I don’t like being a patient. I’d rather of waited in the nice homely first room and get called to have chats.

The staff were lovely. The first comment made me laugh as the nurse sat down with my very thin set of medical records and said ‘Oh you’ve been a very well lady’ Soon relayed that no I hadn’t been but I was new to this trust. Anaesthetist came and saw me, very nice. Changed into gown, regretted not being arsed to shave my legs. Sat on my chair, in my cubicle, and waited. Consultant came to see me. Don’t know what to call him. I’m so used to calling my others by their first names it seems odd to call this guy who is probably at least 10 years my junior Mr….. Anyway, he comes and tells me that the CT scan shows the swelling on the base of my tongue. That the radiologist hasn’t read it yet so there is no detailed report. My interpretation of what he says is that yes there is a problem there but it is ‘not extensive’ My interpretation of that is that it is an early cancer. His demeanour and tone is that the CT has certainly not ruled out cancer. I ask him of it’s not cancer what could it be. He says a cyst or inflammation. He doesn’t say what he thinks it is one way or the other. My instinct tells me that it’s not looking as good as it could.

He then goes to the patient next door and I hear him say. Blah blah blah ‘looks totally benign’ which leaves me thinking….well….mine is clearly not looking totally benign.

Then this really irritating nurse comes over. She reminds me of two different people. One is the midwife who I had with Max, the other was a HCA at Bath. I didn’t like either. She, despite the other two nurses who were assigned to our bay not having an issue with it at all, told me to put something on my feet. She then, and this really annoyed me grabbed by bag and started to look for my shoes. I told her It was fine, I could find them, and off she went. That’s what I hate about hospitals. I’m not incapable of finding my own bloody shoes.

Anyway, two of us were called through the intercom to go along to theatres at the same time, so the nice nurse took some other guy and shoe woman took me. It was a really short walk, and she asked me how I was feeling about the op. In a way that suggested she didn’t really care but thought she had to ask anyway. Now this is a silly question for many reasons. 1. The walk was less than 5 minutes. What meaningful conversation can you have? 2. What is anyone going to say? Fucking marvellous, can’t wait. 3. What would she of done it I’d said ‘No, not having it’ Maybe it is the last chance to back out, maybe it’s just really irritating small talk. But to me what a silly time to ask it.

You’ve probably guessed that this woman was pissing me off. I go into the anaesthetic room and there is the anaesthetist and two ODP’s. Even when you’ve done it as many times as I have it’s still a daunting prospect knowing you’re going to get knocked out. They welcome me, introduce themselves, and ask me to lay on the trolley. This bloody awful woman, who has been standing behind me, pulls undone the ties on my gown, without a word.  I just turned around and said. ‘What are you doing? Can you please just get out of my face?’ I was perfectly capable of undoing my own ties thank you very much. I’m not a piece of meat that needs unwrapping. In that situation there is very little you can control, you can control the undoing of your own gown ties if in fact they even needed undoing at all. Anyway she left and I apologised to the others but explained she was had been really getting on my tits. Did all the usual, cannulas and whatever. All slick, always amazed at how slick this part of the process is. Got first dose of whatever it was, looked at clock 10.20, felt something else go in and said ‘Oh is this the one that sends me off’ last thing I remember is the reply ‘Not yet’

Recovery. All rather uneventful, remember being told to take lots of deep breaths. Got transferred to where I sat and waited. Mr …….. comes to see me. Says that he ‘ would not be surprised if it wasn’t serious’ I repeat back to him what he has said with a ‘what the fuck do you mean quizzical look’ and he says ‘oh sorry double negative’ He seems happier than before. I’m left with the feeling that he does not think it is now as serious as he thought it might of been pre EUA. What do I know? I’m going on gut instinct. My gut instinct is that he still doesn’t know one way or the other but he’s veering more towards ‘non sinister’ I still have no definitive answers one way or another.

My discharge summary is odd. I’m learning a lot about the anatomy of my tongue but clearly I’m no expert. My reason for admission was ‘left tongue base swelling’ my main diagnosis is ‘ lingual tonsil asymmetry’ So basically, the lingual tonsils which are right at the base of my tongue are swollen on one side. Don’t those two things kind of mean the same? A lot of people who have base of tongue cancer have asymmetrical swelling, but a lot of people who have asymmetrical swelling don’t have cancer. So none the wiser than when I went in.

Go in on 11th July for results.

 

 

Yesterday, Today, Tomorrow

Yesterday I had my CT scan. I was pretty well topped up with valium so all went rather swimmingly. No head cage or similar. Just a foam rectangle with a head indentation shape in it to rest my head. Lovely cool room, super staff, less than 5 minute wait. What more could you ask for?

I was warned that the recorded voice on this machine was rather fierce. She was, Apparently the other machine’s recording is in a thick Somerset accent. My son could hear the machine from the waiting room and when I got out he said ‘It didn’t sound anything like the one on 24hrs in A&E’ Anyway I did as I was told and breathed in when I was told, held my breath when I was told and breathed normally when I was told. Then repeated after the contrast was delivered into my vein. Makes you hot all over and you feel like you are wetting yourself. I didn’t open my eyes from the time I laid down til it was over. Apparently my veins were very ‘generous’ and I was told I’d be cleaned up before I left so it didn’t look like I’d been massacred. Didn’t see, didn’t look, just laid back and submitted to the inevitable. 1000% more doable than an MRI.

Today I’ve been to work, some of the locals know what’s going on, but the other customers don’t. I’ve spent far too much time today debating if I can be arsed to shave my legs or not. I’ve also spent far too much time worrying about my son and where and who he should be with tomorrow.  In fact I’ve spent too much time worrying. Goes with the territory I guess.

Tomorrow at 7am I will be picked up and taken for a 8am  check in at Taunton. I’m having a panendoscopy. Which appears to be a holy trinity of endoscopes that look at every crevice of your gullet. voice box, throat, nose and ears. I’m very much guessing they will take biopsies of the ‘swelling’ they saw at the base of my tongue. I have no idea how shit this will make me feel, or how much it will hurt. There are risks. But I’ve weighed them up to find out if ideally there’s nothing sinister there, or if there is it’s tiny and can be removed by surgery through my mouth, anything worse than that I’m not ready to voice yet. I know what it would mean, if you want to know enough you can go and find out yourself.

The facts so far are these.

I presented with a quinsy. In the table in the article below I tick a lot of the cancer boxes and not many of the quinsy ones.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4220219/

An ENT consultant has seen something on the base of my tongue that when asked if it could be cancer has said ‘possibly not probably’

Oropharyngeal cancer rates are rising exponentially due to HPV infection. I’ve spent the last 5 years having bits cut out of me due to HPV.

http://scienceblog.cancerresearchuk.org/2015/11/13/mouth-cancer-rates-are-increasing-but-why/

Forgive me if I am tempted to draw my own conclusions from that little lists of facts (and the plenty more I’ve read!) But sometimes zebras sound like horses.

 

 

 

FFS 3

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Above is the Beryl Institute’s findings on what makes for good patient experience.

To save my sanity on Tuesday I got in touch with one of the Macmillan nurses from Bath told them what had been going on. She offered to ring Musgrove on Wednesday and try and unpick what was happening for me as I clearly no longer could without completely losing my will to live or keeping my temper in check.

The very long story short is that by Wednesday afternoon at about 3pm she rang me, I missed the call, so she left a message saying ‘I’m sure they have already got in touch with you but you have a new date for the op and a date for the CT’ I called her back and said No. They hadn’t been in touch and she told me the dates that they had given her. So just past 3 on Wednesday afternoon I knew when I was going in for my EUA and also when my CT was. But not officially. It became a waiting game to see how long it would take Taunton to let me know what I already knew.

At around 5pm the admissions suite rang to tell me when my EUA was booked for. Not the calamitous ENT department, who could still turned around their catalogue of errors with an apology and a call to tell me these new dates.

Today, Friday, I get a letter in the post telling me when my CT is.

Yesterday I messaged the friend who came with me to my initial consultant appointment and she confirmed that the consultant CLEARLY stated he wanted these diagnostics done within 2 weeks. By the time I have my EUA it will be three and a half weeks.

I know the resources are finite, I know mistakes are made, I know that the world is imperfect, I know I am not the only patient waiting.

I also know that holding your hands up, saying sorry, personally picking up the phone and telling someone their new dates can make a huge difference in making things right.

I know from my own career that people complain, sometimes warranted and sometimes unwarranted. I know that the way you deal with these people can escalate or deescalate a situation rapidly.

Referencing the image above. Have I been listened to, communicated to, treated with courtesy and respect. Am I left with confidence in their abilities, has my pain in terms of anxiety, been taken seriously?

Has my patient experience so far been good or bad?

Do they actually care one way or the other?

 

FFS 2

Lets just add the rest of this sorry tale.

Just after my call to ask if someone could please book my CT. I received a call from Taunton to say that they had no record of my EUA on Friday. I did lose my shit on the phone. I told the lady in question that I really didn’t want to hear anymore and could she just go away and get back to me when she had some definitive answers.

I’ve just had a long conversation with Somerset CCG PALS. Who advised me to also ring Musgrove PALS to see if they could also find out what on earth is going on.

They are on answerphone.

So, seeing as I should be, ironically, at the PHE NCRAS conference tomorrow, which I will go to if I don’t have an EUA on Friday but won’t if I do. I tried one last call to the ENT department to see if they had any answers.

I was informed that I am ‘pencilled in’ for Friday, that it is not known if a scan can be done this week, and as the consultant is not there today they can’t tell me until tomorrow if he is happy to proceed with the EUA without the scan.  I said, very politely under the circumstances,  that maybe after all that has gone on it would of been nice if she had rung me and told me this. She said ‘You were very rude to me on the phone earlier’ So clearly, a little tit for tat punishment being dealt out there in not letting me know.

I have NEVER complained ever about the NHS formally. But by god I will be this time.

Appalling.

 

 

 

FFS

Here’s the story so far.

Remember I’ve done this before. I probably know far more than the average person having to navigate this. I know about the rules and regulations and targets that hospitals have to follow for suspected cancer cases. I know that you can call and email the consultants secretary. I know you can fight your corner. I know you can chase. I have the confidence to do it.

God help  anyone who doesn’t.

20.5.18 A Sunday. I have such a sore throat, can’t swallow. hardly talk that I go and knock on a local GP’s door. I know them, not massively well, but I’m that concerned I weigh up that knocking on their door on a Sunday morning is worth the potential of pissing them off. They were out.

20.5.18 I call my doctor’s surgery, to find out who I call out of hours. It’s 111. Joy. I’ve dealt with them before and quite frankly they are crap. I can hardly talk. I INSIST to the call handler on talking to a nurse. The nurse, eventually calls me back, and signs the golden ticket to allow me to go and see the out of hours doctor. Just. Their first assessment was that I could wait until Monday morning.

20.5.18 I go to out of hours. Get seen by a nurse practitioner at Yeovil hospital in the out of hours service. She probably should of admitted me there and then, but she gave me a preccription for  antibiotics ‘You better drive back to Crewkerne quick our Pharmacy isn’t open’  and sent me on my way.

21.5.18 I call my GP. 4 words. This involves speaking to a receptionist, who asks you whats wrong, tells you can go on the call back list for an appointment, can’t tell you when that will be, doesn’t listen to the fact that you live in a rural spot where phone reception is pants and calls are often missed, doesn’t listen to the fact that you know you  absolutely need to see a doctor. Get the call back, have to go through all the same shit, then eventually get the ‘come in and see us’ invitation.

21.5.18 GP takes one look at you, tells you that you need to go to A&E. Rings ahead to tell them you are coming. They tell her to tell me that I should go ASAP. I leave with letter from GP in hand, nip home to literally pick up phone charger (THE most important thing in hospital!) and go.

21.5.18 Queue up, patiently, at A&E reception at Taunton. In front of me is a small toddler with a massive egg on his forehead, and a man who has a small cut on his finger. I hand over my letter, tell them in my almost absent voice that cuts like a knife every time I use it, that ENT know I am coming, I have a letter from my GP. Get told to take a seat. They are incredibly busy.

21.5.18 After about 40 minutes I get called. To triage! WTF. I again have to explain, again with a voice that hardly works, that ENT know I am coming, I have a letter from the GP. Someone goes off and sprinkles some common sense and communication fairy dust and I get taken off by a doctor who had probably been wondering what had taken me so long to turn up.

Treated, sorted, discharged. With the comment that they want to see me for follow up within the next 2 weeks.

Get a letter for an appointment for 3 and a half week in the future, not at Musgrove but at a local community hospital clinic. I ring the consultants secretary and  I say that I am concerned that 1. The appointment is not within the 2 weeks that was suggested and 2. That would all the diagnostic capability that may be needed be available at a satellite clinic. They agree and an appointment is offered for 6th June at Musgrove. Still just past the magic 2 week wait that suspected cancer cases should be seen.

Somewhere in this time line I try and get to speak to my GP so she can prescribe me some anti anxiety meds. Again I have to go through the we’ll phone you back, we’ll decided if you warrant a call from the doc, then you can wait for call from the doc, then you can speak to the doc, then the doc will decide if they will see you or not. I again explain to them that my phone reception is shocking, if they give me a window when they expect to phone I can make sure I am somewhere with reception. They can’t. I had a bit of a ding dong with the practice manager who helpfully suggests that I could always get a landline. I informed her that yes I could, but every time I do, it knocks out my broadband. She also insisted she lived in the same village as me. Seeing as where I live consists of 5 houses nestled in 500 acres I clearly told her she didn’t. Yet she still insisted she did. She clearly knew best!

6.6.18 I go to my first consultant appointment.  I’m examined and told he would like to order me an MRI and an EUA. He would like the scan first. I tell him that I find MRI’s very challenging and would need sedation to undergo a head and neck one.

10.6.18 I send a detailed email to the consultants secretary explaining I cannot undergo an MRI. I don’t want to waste anyone’s time or imaging slot. If there is no possibility to be sedated fully could they please do a CT instead. Remember he wants this imaging before the EUA.

13.6.18 I attend pre op for my EUA. I tell the pre op nurse that I have informed the consultant via his secretary that I will not be undergoing the MRI. I also tell her that I haven’t had a reply to my email to the consultants secretary yet.

14.6.18 I ring the consultants secretary. Her colleague tells me that yes the MRI has been cancelled and I will be having a CT. I inform them that possibly communicating that to me would of been a good idea. Literally 20 minutes later I get a call from the MRI department offering me an appointment for the MRI. I inform the lady that I won’t be having an MRI now but a CT. She, quite crossly, informs me that no one has told her. I inform her that maybe she should get cross with the people in charge of communicating with her not me.

19.6.18 Today. I ring the imaging department to see if a CT appointment has been made yet. After holding for 20 minutes (I’m already over my months minutes and getting spanked financially every time I make a call) I decide I may have more joy with the consultants secretary. I again speak to another of the team. They inform me that yes my MRI has been cancelled but no request has yet been put in for a CT.

I hear myself say ‘Can someone please book me a CT to find out if I have cancer or not’

I’m waiting, for as long as this has taken to write all this, to find out if someone can do that, incredibly simple task.