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.

 

 

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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

35882084_10156527545781383_1922997033266839552_n

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.

 

 

 

 

 

 

 

 

 

 

 

Charity Accountability 1

If you read this and know that what I am saying is wrong do get in touch. I would be overjoyed to be proved wrong.

This time a year ago I was part of a committee that raised over £62k for CRUK by organising a Relay For Life event in our local small town. Our target was £20k so you can safely say we smashed it. Despite this CRUK refused our requests for medals, such a small gesture of thanks, for our participants, yet bought a bottle of champagne to the very same meeting. I don’t drink. A local small business donated medals for us in the end, another small local company donated the ribbons. Do I go and tell my friend that donated £20 that she effectively just bought an unwanted and unneeded bottle of champagne? Do I go and tell those small local businesses that they have just subsidised a ‘charity’ with an annual income in the £100’s of millions.

I’ve also, like many other people affected by cancer, have donated or fund-raised for the other big cancer charities. I’ve hosted Macmillan coffee mornings and donned my big yellow hat many times for Marie Curie. I’ve also raised funds for my own site specific cancer charity. Why did I do and millions like me do this? Because we think it will help.

I thought it would in some way ease the way for people affected by cancer. I’m not a doctor or a nurse or a research scientist so all I felt I could do was to raise funds for those charities whose job it is to solve the problems of cancer. Broadly speaking CRUK’s remit is the prevention, diagnosis and treatment pathways of cancer  ‘Lets beat cancer sooner’ Macmillan’s remit is more support based ‘Life with cancer is still life, and we’ll help you live it.’ whereas Marie Curie covers ‘Care and support through terminal illness’ Noble and emotive aims which elicit HUGE amounts of donations from the general public. All those people who donate, think and hope that their donations are making the lives of cancer patients better either now or in the near future.

The first time I questioned this was years ago when I boarded a train to attend an event hosted by a small site specific cancer charity. I had been asked to speak for 10 minutes at the event. I felt a little uneasy as the cost of the travel and the accommodation they paid for me to attend as it almost equalled the relatively small amount of money I had raised for them. What made me more uneasy is that as I walked the platform to board the train I saw the CEO sat in first class. I knew then that my fundraising for that charity had been totally wiped out. All those individual £5 and £10 donations from my friends gone in the blink of an eye.

During our recent CRUK fundraising a few people were invited to see first hand where our fundraising was going. This kind of ‘experience’ is only offered to people who have raised a substantial amount of money. Off we went to Bristol University labs where research work was being completed on Neuroblastomas. A type of central nervous tumour which predominately affects young children. We were given a lecture, including moving stories and images of angelic children who had lost their life to the disease. The fact that the research was co funded by a far smaller charity was not mentioned but their logo, clearly not as slickly branded as CRUKs was there on the slides. The work was obviously highly scientific and the lecture by the lead guy was tough to follow and I studied science as my honours. The general gist of it was that if they found a certain small thing within the tumour responded to a equally thing a drug company could take this research and develop a drug that would deliver the small thing. That’s a lot of money to be spent on finding out which small thing matches which small thing. A LOT of money. I asked, at the time genuinely not knowing the question would cause unease, ‘Why aren’t the drug companies funding this research then?’ The answer was that it was too risky financially for them. So my little old ladies £5, the pocket money from the kids, the time and energy many of us put in to organising events was being used to cushion  the financial risk for a multi million pound pharma company. Many people there did not make the connection. So brainwashed by CRUK’s brand, advertising, constant stream of self promotion. I did.

Shortly after our epic result in raising £62k for CRUK I started my role as NCRI consumer. The NCRI (National Cancer Research Institute) is a charity in its own right but is funded by it’s partner organisations including CRUK, Macmillan and Marie Curie as well as some other charities and health agencies with enough money in the bank (let’s just remember where that money comes from) to qualify as a partner. I was looking forward to seeing from the inside where the money raised was going to be put to good use. It’s a another layer of executives, staff, infrastructure and the inevitable expenses that are funded by your donations. I’m still unsure if it offers value for money. Give me another year and I’ll let you know.

It’s not the only organisation that slices from the cancer cake of course. There are all sorts. Waiting at my local station to catch the ridiculously early train to London I met an acquaintance on the platform. We got chatting about why we were going to London. I was going to attend a Living with and Beyond Cancer Steering Group meeting. He was going to attend a board meeting for an investment company that invests money for cancer charities. His work was pro-bono but his expenses were paid from the fees that the charities provide. We didn’t travel together. He got in first class. Does anyone know if that investment company is doing well? Are they increasing the charities funds? How much are they charging?

I know that meetings, travel, staff, expenses, offices and a million other big and small costs are involved in running an organisation.

But who is holding these charities accountable in the way they spend OUR money? I genuinely just googled ‘Who holds charities accountable?’ There’s a heap of reading there for another day.

Such a big subject … to be continued.

 

 

 

 

 

It just gets in the way

I’ve had to cancel lots of plans this last week or two. The one I’m most pissed about is that I’ve  had to drop out of filming for a documentary.

Exciting and  interesting events and opportunities have had to be put on hold while I navigate the letters, appointments, prescriptions  and phone calls that have followed an emergency hospital admission and  a follow up to see if it’s ‘sinister’ or not. Sinister seems to be the word the medical people use for cancer.  Sinister Definition – giving the impression that something harmful or evil is happening or will happen.

It’s quite exhausting having to wait to see if you are going to face something harmful and evil. Imagine the feeling you get as you walk down a dark alley and think you see something in the shadows. Then live with that feeling for a few weeks while the wheels turn and you get to find out if it’s a knife wielding rapist or a discarded carrier bag.

Luckily my GP, who is lovely, when you can get through the double lock, 20 phone call system to see her or talk to her, has given me some pretty heavy octane pharmaceuticals to get me through this acute phase. They certainly take the edge off. Even still I had a panic attack on  Monday and ended up in A and E convinced my throat was closing up again. The severest doctor I have EVER seen came in to see me. I held my hands up and said I think I could be completely overreacting. She confirmed my throat was indeed swollen, put me back on antibiotics, and assured me that I had done the right thing with a smile and a touch on the arm. Kind words and actions from a doc who looked like she took no shit from anyone.

So whats the point of this post? Just to voice that it’s exhausting, it’s frightening, it’s frustrating and annoying. That navigating the system could be made far easier. That sometimes you have to get some drugs to help you function. And this is just the diagnostics process.

I’ve got my examination under anaesthetic on Friday. Hopefully day case back in time for tea job.

I’m not having an MRI as they are unwilling to sedate me for it so I’m having a CT. Waiting for that appointment.

Off to work.