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.

 

 

 

 

 

 

 

 

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Another day another Pre Op

Silly questions no?

Had to get my tits out for the ECG. Really? Thanks for that. Nothing like lying prone with your tits out behind a paper screen to make you feel safe and secure.

Yeah … I know I can’t spell.

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Nurse was actually supersonically lovely. Even made me cry. Which was good. Much needed.

 

 

Things I don’t want

I don’t want to have an MRI on my head/neck. I fucking hate MRI’s at the best of times, having a cage put round my head and having my head going fully in the machine with my arms by my side fills me with utter terror. It won’t happen without hefty sedation, and I don’t mean diazepam.  I have informed my consultants secretary today that if I can’t be sedated they will have to make do with a CT. There is the possibility of an open scanner. But not sure if I can get referred, waiting times, etc etc.

I don’t want to have a panendoscopy. It sounds grim. Grim side effects. I’ll be out of it so won’t know too much unless they rip my oesophagus of course. Then I’ll know about it. I’ve asked if they can combine the MRI with this? I know it’s never as simple as that.

I don’t actually want to undergo treatment for head and neck cancer. It sounds amazingly grim, far, far grimmer than anything I’ve encountered before,  with hideous, potentially life long, life limiting side effects. Of course I don’t know if this is even a possibility yet. But it’s ‘possible’

I don’t want people to tell me I will be fine. Because, you know, the consultant at the hospital doesn’t even know that yet so how you do I have no idea. You may think it helps. I can assure it absolutely doesn’t. Knowing the right thing to say is really hard. Don’t know what to say? Are you sorry I’m going through this?  Say, ‘I don’t know what to say but I’m sorry you are going through this’

I don’t want people telling me that it’s good news that it is only ‘possibly’ cancer rather than ‘probably’ cancer. One of the ways people prepare for a potential cancer diagnosis is to convince themselves that it will happen. Then the only way is up. Don’t burst our bubble. It prepares us and in a funny way protects us.

I don’t want to do this. Any of it. I’m sick and tired of it all. Sick and fucking tired of it all.

I don’t want people to try and make me feel better, because you can’t.

I don’t want to get diagnosed with a head and neck cancer because I don’t want to undergo the treatment. I don’t want to have to make the decision if I take that treatment or not.

I just want to get it off my chest that my current mood is that I am done.

Done.

Wouldn’t you be?

 

 

 

Ariston

It goes on and on and on.

Appointment today at Taunton.

Looked down my throat with the camera up my nose.

Saw a swelling on base of tongue. ‘Possible but not Probable that it is  cancer’

Told him I would now focus my googling on tongue cancer not tonsil cancer.

MRI and EUA ordered. Asked him how quickly I would be getting them.

‘Within 2 weeks’

‘So pretty ‘possible’ then’

Nice enough guy.

Let’s see.

 

Muster

 

Yesterday we had our dog put to sleep, at home, tennis ball in his mouth til the drugs kicked in. A great way to go all things considered. He had internal bleeding, probably caused by a tumour in his stomach, he was only going one way and I’m pleased I ended it while his tail still wagged, he liked his food and balls still interested him. The vet said he would rapidly go down hill and it was the kindest thing to do. Still a gut wrenching, guilt inducing decision to make.

He was a truly magical dog. We’d had him from a pup and he celebrated his 13th birthday in April. Apart from an extended holiday with a friend after my first op, he has been a constant companion in my life for a long, long time.

I’m heartbroken.

He was a typical lab, lived for food and walks and balls. My son says he can’t remember much of life before him. He was 4 when we got him I suppose he can’t. That’s a lot of memories, family holidays, walks, and love to remember. It’s also a lot of socks that have been eaten. A lot.34445105_10156483926381383_2467629629775544320_n

He came from a farm in Somerset, a dairy farm, where they were clearly making ends meet with some pups. There were only 2 left. I chose his brother, who was longer and leaner than the other short, little runt. However the look on Muster’s face to be left behind did something to me and I said ‘No, I need to have that one’ He cost £350, the absolute best money I have ever spent. The farmer clearly wasn’t sure about this single mum with a small kid in tow as a potential responsible owner for one of his pups, not least as initially the cheque bounced, but he let us have him, with the instruction that if we ever grew tired of him we must take him back rather than put him into rescue.

On the journey home he sat in the passenger footwell, with Max in his car seat perched above him. One of the reasons we got him was that Max had developed an almost phobic fear of dogs and I was buying him with a  kill or cure mentality. It worked.  Max wanted to call him Misha which I thought was too girly, I wanted to call him Buster, so Muster was born. Throughout his life he has been called Buster, Custard, Mustard he didn’t care as long as you were calling him to play or for food.

He was my first dog. I was never allowed one as a kid, despite being all I ever really wanted (apart from a horse). Max used to race him on his bike, he would leap into the canal to fetch balls and sticks, he would swim in the sea, he was gentle as a could be with a litter of kittens, while he didn’t have a viscous bone in his body he surprised me by defending me when I once got attacked, his own balls got him into a couple of scrapes and twice he had to be picked up, in disgrace, and not inconsiderable cost,  from Bath cats and dogs home after his instinct to sow his oats led him far from home. In his lifetime he has had 4 different cats live with him. They all adored him.

My mum, not a self confessed animal lover, said when I told her that I had a dog, said ‘Well he’s never coming in my house’ my reply was ‘Well you won’t be seeing much of us then’ She relented and  every time we visited or she visited us she always bought him a bone, she sobbed when I told her yesterday. everyone who met him loved him.One Christmas morning we all woke up at my Mums. Max was about 5 or 6. Muster had been ill, and I mean spectacularly ill in my Mum’s kitchen. Shit and puke everywhere, vertical as well as horizontal. I missed Max open all his presents that year as I was on all fours, shouting out ‘Oh that’s lovely’ between retches. She never saw the state of her kitchen, I don’t think if she ever did she would ever cook in it again!

On the many evenings, as a single mum, I spent alone at home he would be by my side. In my darkest days he would be a reason to get out of the house. He was a dog. Just a dog. But he really was my best friend. He listened to my darkest fears, and there have been many, and gave me the unconditional love only a dog gives.

When we sold up and moved into rented accommodation he wasn’t allowed there. Every time the landlady came over we had to hide him. A local friend was the hiding place of choice and a mercy dash coupled with manic cleaning and perhaps a touch of blind eye turning meant we got away with it. He spent his last 2 and half years living on a 500 acre farm where we certainly didn’t have to hide him. Very happy days.

So, if you have a dog, give them a hug, a long walk, a tummy rub and a treat. Take some photos, take some video. The day will come when you have to make the most heartbreaking decision,  until then just love them the way they love you.

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Couldn’t make it up.

https://phescreening.blog.gov.uk/2018/05/14/help-us-spend-less-on-leaflets/

 

This just popped in to my inbox as I subscribe to the PHE screening blog.

What an absolute farce.

I’m seething. You should be too.

I’ve left a comment on their blog post. Under moderation. Let’s see.

Dear PHE,

How about stopping sending cervical screening invites to the women who have had cervical cancer. It’s a very common moan in survivor circles that these leaflets/invites are upsetting. Many of us have given up trying to get our names taken off the list. Believe us we have tried repeatedly. Do women who have had mastectomies receive the same upsetting mammogram invites?

In fact how about radically overhauling the way in which invites to screening are managed full stop. How much are Capita being paid to manage this? Do you think cutting back on a bit of printing and postage is going to solve the problem?

You may find my latest blog post rather blunt, but it’s very true. It’s damning, but if you read back through you will see that I do have at least some idea of what is going on. I’m happy to help.

https://helloverajuice.wordpress.com/2018/05/28/am-i-deluded/

I’m not sure what data set you and Jo’s are working on but fingertips gives good basic data on screening uptake rates at Primary care level. A representative from Jo’s at a recent meeting was unaware that Primary care could access their own screening data. I’ve sat through presentations at Britain against cancer from PHE data people. So much duplication, I despaired. I think reigning back on a few paper leaflets while the whole screening service is in utter disarray is akin to deckchairs and the Titanic.

I look forward to hearing what great ideas you’ve come up with in Manchester. Maybe you’d like to hear some of mine.

Yours
Julia Tugwell – Yes the same one quoted in your routes to diagnosis press release.

Am I deluded?

Please read this with the knowledge that I am on a two week wait to see if my throat is ‘sinister’. This makes me slightly more devil may care and gobby than usual. I am in a ‘fuck it’ kind of mood.

This week saw the publication of the screening inequalities strategy.

https://phescreening.blog.gov.uk/2018/05/24/mind-the-gap-phe-screenings-inequalities-strategy-launches-today/
Again I hear ‘we are working in partnership’ ‘We are doing everything we can’

It’s all total bollocks. They aren’t.

I’ve had conversations with Anne Mackie face to face and Jo’s Trust about the , very cost effective, work I do to reduce screening inequalities. Are they interested? No. Is that because I’m deluded and what I do is crap, or is it because it’s a little bit threatening to have someone get off their arse, and be able to influence 50 GP surgeries in one go for the princely sum of £50. £200 for the whole of Devon. I reckon that’s probably half a days salary for them. What do you achieve in half a day? I recently applied for a role at Jo’s. I didn’t really want it. The role looked great but way too much travelling and based in London. I really wanted to see how they responded. They didn’t, at all, well not until I’d sent a DM via twitter to the CEO, then magically a thanks/no thanks email arrived within half an hour. Very poor, very poor indeed. I’m either deluded or crap. One or the other.

The top reason listed for screening inequalities? Poverty. Watch the video.

So how do  people who are on hefty salaries get a handle on that?

‘We have created leaflets’ Because we all know leaflets are REALLY useful and influential. Do they know the rate of illiteracy in the UK?

‘This builds on our work from 2015’ So in 3 years you’ve now just produced the strategy document. 2,700 women have died from cervical cancer since then. How many more will die before the ‘strategy’ filters through?

Just how much in meetings, time and energy did the strategy cost to create. Yet, when I asked for £50 travel expenses when I was invited to speak at a School Nurses training session (they are the ones who deliver the HPV vaccine) I was told no. £50. Just say that again £50. And if you are wondering why I couldn’t stump up my own £50; two words cancer poverty.

Funding isn’t always so hard to come by. I’ve just had travel, accommodation and conference fees paid for the PHE conference in Manchester. (Security, security, we have Julia entering the building)  Way. way more than £50 but hey I guess that money will tick a box to say ‘Patient engagement’ though it will not directly increase screening rates AT ALL. I will no doubt sit through presentation after presentation with highly paid ‘experts’ (Have they ever been diagnosed with cancer due to missing screening appointments?)  telling us how they are doing ‘everything’ How they are ‘working in partnership’ How we ‘work with patients’ How we have data that will inform planning of the strategy to inform the meeting of the action plan that will report on its findings which will create a direction for ‘work’ in 2099.

Ah, that’s better.