Rough

Last night and so far today have been rough.

The mouth guard has been really painful to wear. 

Wednesday can't come soon enough to have it removed.

I've had less than 500 calories since Wednesday night, and eating is impossible today. Even drinking is difficult.

Despite the pain, I hope it's doing its job and protecting the wounds so that they stay closed.

In better news the little one had a lovely time on the beach with Mummy while J did Parkrun. They've been to the pub for breakfast and have been in the garden all afternoon.

I've been in bed, maxed out on painkillers, sleeping as much as possible.

Another boring post!

After

Apparently the operation went well, the cover plate was fitted by them and it has to stay in for a week. Fingers crossed that the stitches hold. The worst pain is in one of my teeth that the cover plate hooks onto.

Mr E told me beforehand  that he feels very responsible for what's happened.  I told him the only person responsible is the man who butchered me and left a tooth root behind and he's oblivious. I asked if there was a plan D. He said yes, but I really won't like it. My daughter did some research and apparently it involves using part of my tongue, so please send good vibes as that sounds terrible.

My op took place at 12 noon as I'd been tagged onto the end of the morning list after he'd finished operating on the children.

I felt so worried about yesterday's op that I sent a list of all log in details for all the bills and my savings account to my husband. He's never dealt with the finances in 42 years because I was better at it but he needed to know as I had a bad feeling about yesterday. Now that everything is online it's not as easy as a bill just arriving in the post and being able to speak to a human who deals with things efficiently.

The anaesthetist was lovely. He knew how much the last anaesthetic had knocked me out, so used IV drugs rather than gases, and put electrodes on my head to check that I was deeply under.

I was so dehydrated that he couldn't find a decent vein to get the cannula into my right hand so that attempt failed ( my hand is very bruised due to it), he couldn't find one on my left hand, so ended up in my left wrist. First thing that went wrong. Then something else was wrong but I cant remember what. I just remember being in the anaesthetic room and thinking, 'Well that's 2 things, the operation will probably go wrong now and I'll die.'

I was thrilled to come to in recovery quite quickly and all seemed well. My first thought was, 'I'm alive.'

It was the best that I'd felt of the 3 operations...I felt rough and very woozy with the first and was so out of it that I remember nothing of the second, but apparently I bled quite a bit, was cold and my BP dropped.

They had me under a warming blanket but I began to violently shake/ jerk. It was just my legs at first and they sent for the anaesthetist thinking it was a drug reaction, because my temperature was fine. He injected something through the cannula to try to help and left.

The shaking didn't improve and eventually involved my whole body. The bed was shaking and making a noise as I bounced up and down on the mattress. Curtains were pulled round, other recovery nurses who were still waiting for patients from theatre appeared.

'What has she had done?'

'Is she epileptic?'

'Is there anything in her medical history to suggest why it's happening?'

'Bleep the anaesthetist '

'She cant go back to the day case unit like this. They won't take her'

Tears came and I told them I was scared.

The anaesthetist returned to find me violently shaking/ twitching from head to foot.

He thought magnesium may help and injected me with 2g very slowly to try to prevent the nausea that it can cause. It causes the strangest feeling of high heat coursing through your body, but it worked and the shaking/twitching slowed and stopped.

It could have been caused by the anaesthetic but I've been told to see my GP for a blood test in case I'm deficient. When my daughter checked the list of symptoms, I've been having some of them for ages and they were attributed to the ME/CFS. One of my BP meds is a diuretic which doesn't help, and nor does the ED. I had blood tests when attending the ED clinic but don't know if that was tested for and those results don't show on the NHS app. My GP has never tested for it, so I'll try to get it checked next week.

I was much less sleepy and far more lucid in recovery and back on the ward, but still developed vertigo; not as badly as the first time, but I couldn't close my eyes as it made me feel drunk, as did turning my head to the right. I asked for cyclizine, took it, and rested but didn't sleep. My husband had gone to the hospital pharmacy to collect my meds which involved a walk to the other side of the hospital and a 40 minute wait. By the time he got back I was feeling a lot better and was able to get up and dressed and after being discharged I headed home.

I went to bed and I fell asleep around 8pm, hence me being awake now. I took co-codamol and have been on my phone. It's 5am and my son in law has just left for work. I've been awake since 2.20am.

I'm supposed to be seen in a week's time and the nurse has said their ward clerk can chase it if I don't hear anything. I'm not very hopeful of hearing as the discharge letter doesn't say that anyone has arranged it!

Going to try to get back to sleep now as we are hoping to go to the caravan with my daughter and the little one today. I figured that I can rest and sleep there just as easily as here, there's a hospital nearby in case of emergency, and at least the 3 of them will be able to have some fun... the little one has been asking for weeks about the caravan and the beach!

Thank you for comments on my previous post. I'll hopefully reply later today.

Any good vibes through the ether would be gratefully received. I really dont want my tongue to be used as a repair method...

Just remembered that the 2nd thing that was wrong in the anaesthetic room was a faulty blood pressure cuff!

Prepping

I've ordered protein powder ( to be delivered tomorrow), I've bought baby food pouches of fruit puree, I've got tinned fruit to be blitzed down, I've got frozen red, black and white currants, and I've got huge tubs of Greek yoghurt. 

I've got tins of soup and custard, and chickpeas to turn into hummus.

I'm aiming to pack in the protein and vitamin C in an effort to aid healing, whilst keeping the food soft and easy to swallow.

The registrar has said that they may need to do a palatal flap this time, which will involve taking a flap from the roof of my mouth and twisting it across to cover the 5p sized hole. They'll assess when they see me tomorrow. If youre feeling brave, Google palatal flap to see what it entails, including an open wound on the roof of the mouth which will take weeks to heal.

I had my pre-op this morning. I answered 129 questions online, many more questions at the clinic, had bloods and MRSA swabs done, had my height and weight checked ( I didn't look and asked that the number wasn't said aloud), and my BP and pulse were taken. No need for another ECG today.

I've cleaned the bedroom and put clean bedding on.

I've washed my dressing gown, and packed it along with my slippers, a book and tissues. I haven't been able to blow my nose for 6 weeks, and can only dab.

I've got the steam inhaler and Olbas oil ready.

I've got co-codamol and ibuprofen by my bed. They'll doubtless prescribe dihydrocodeine again, but I didn't find it very effective after the first operation so swapped to co-codamol and the pain relief was better.

I've stocked up on Curasept mouthwash and another palatable cheaper chlorhexadine one  because the one they prescribe is like poison despite it being a leading brand.

I've visited my mum and done her shopping.

I'm as ready as I can be.

I had a phone call from the Waiting List Dept yesterday. I thought they were going to cancel my op, but it was a request that I go in at 7.30am rather than 11am as Mr E wants me on the morning list. It will give me more time to recover afterwards, before I have to go home, so I'm very grateful. 

I really hope it's third time lucky, but also know that he operates on people who are in a much worse place than me.

Onwards.

Watching grass grow

 

I'd rather feel my feet in the grass than wear expensive shoes 

Dr Partha Nandi

Freshly laid lawn

12' x 12'

Tucked away in a corner at the bottom of the garden

Now growing well, and soon it will be usable

Garden changes/ tidy up almost complete

3

I went back to hospital this morning due to further problems.

The result is that surgery round 3 is scheduled for next Thursday 21st May.

The latest proposed repair method sounds like the worst yet. 

The cover plate has been fitted and is making me gag.

My mental health is done for.

Watching the pennies

You can make money two ways- make more, or spend less

John Hope Bryant

Rescued from the bargain trolley at B and M

They just needed deadheading

My flowerbed at the caravan is filled with rescue plants, bought for fractions of their original price

Forever watching the pennies and spending less

For me, that's always been preferable to chasing more money

Watching paint dry

Baby, I could watch you watching paint dry, and I still wouldn't be bored

Elle Kennedy

Charity shopped mirror £2.25

Stuff gathered

Prep done

Painted in the sunshine

Paint dry

In place

Post 3 of 3

 

We're at the caravan for a few days. It can't be longer than that as we have to take my mum to a medical appointment next week.

I'm armed with painkillers and my 3rd course of antibiotics ... see the 2 previous posts as to why!

Thank you for kind comments on last week's post. I still feel fairly despairing that I'm still in this situation with my mouth 30 days after the initial surgery, but I'm going to try to rest and relax while I'm here.

Ongoing

Thursday 7th

Awful pain last night. Pressure in my nose and around my eye, and pain in my cheekbone and teeth, which suggests a sinus infection. I couldn't get comfortable, and wanted to rip my face off. Slept sat up to try to ease the face pressure.

Small trickles of fluid down my nose still when I rinse my mouth. It seems too much of a coincidence that this only happens with the rinsing, and it's still hissing when I speak.

Rang the ward again this morning so just waiting for a call back. Who will get the short straw and have to deal with me today?

Exactly 4 weeks today since the first surgery. I've had another since then, it's been restitched twice, and I've had 5 visits to the assessment unit and 3 to the maxfax clinic.

Poor J has been at the hospital almost as much as if he was still working there.

I haven't cried because I fear it would worsen things, but I'm on the verge of tears quite a lot now. Pain and frustration and no end in sight...

Back from hospital.  Wound is showing signs of an infection developing. No wonder my cheek was warm and I felt wobbly this morning.  No visible hole but it's still hissing when I speak. I think the infection has been caused by them fitting 3 moulds into my mouth to do the impression as it scrubbed the stitches in my cheekbone and gums ( I also have stitches in the roof of my mouth and across the socket where the tooth used to be and where there is now a 5p sized hole covered by flaps taken from my cheek)

Round 3 of co-amoxiclav...I've just got over the thrush that the previous 2 courses caused.

Apparently I'm not to worry because the consultant has a plan in his head for what to do next.

I just need that follow up appointment so he can share it with me.

When I went to the dentist thinking I had no problems back in November 2024, little did I think I'd still be suffering, or have such in depth knowledge about oro antral fistulas!

Reopened, more surgery looming

Tuesday 5th

The stitches lasted until Sunday, then it began the routine of squeaking, then whistling and then gurgling.

I went to hospital this morning and met the latest on call doctor. It looked intact to him, but I know the script by now and give it another few days and I will probably have a positive valsalva test and water coming down my nose.

Then there'll be another phone call and another hospital visit.

He said he'd spoken to my consultant and ' he has a plan'. I've had a dental impression done for a plate to cover the area. It was incredibly painful ( 2 moulds tried to get the sizing correct, then the impression itself) as the mould was pushed into a large area that is stitched. 

There's also more surgery in the offing( I think round 3 is inevitable now as it has worsened since this morning)

I also saw Doctor K ( H*****) who restitched it last Thursday. I was in the waiting room and he saw me and J so stopped for a chat, asking if I was there for a routine appointment ( oh, how I wish!) so I explained what was happening.

The doctor who took the impression was the one who restitched it the first time and was present during my first surgery. 

I'm all too familiar with most of the team now, and them with me.

Oh, and its our wedding anniversary today... we forgot until we were leaving the hospital grounds!!

Life

Same seat, different day. My 4th visit to SAU, to go with 2 rounds of surgery and an outpatient appointment.

I've been restitched...again.

Life for the last 3 weeks has revolved around hospitals, my bedroom, books, television, lots of sleep, and pain relief.

If you're bored of reading about it, imagine how I feel living it.

As this will be life for the foreseeable, there'll be nothing to post, as everything in drafts is boring reading too.

I'll be back if life improves, but it was reiterated yesterday that the defect is very large, and 'we need to pray that it holds.'

I'm not a person who prays, but 4th time lucky would be excellent as I'm absolutely worn out with it, and this is not the retirement we dreamed of.

Hospital again, again

I went on Monday, and yet again was assured that it was intact, despite the fact I could hear it hissing.

I'm autistic. I have ears like a bat and can hear things that other people can't, but I can't see into the top of my mouth, so I have to take their word for it.

I've been in a dark place, knowing that it wasn't right, but unable to do anything about it.

It has continued to hiss, and this afternoon it gurgled when I drank.

Tonight, salt water poured down my nose when I was rinsing my mouth; a sure sign that it is open.

I phoned the ward and the nurse said the maxfax doctors had left and there was just a duty doctor who wasn't on the ward. She told me that I should go to A and E. I refused. I cannot sit on a hard chair/ the floor for hours. I don't have it in me as I am absolutely wrecked, physically and emotionally.

I thanked her and told her I would ring the ward first thing tomorrow to arrange to be seen on the assessment unit.

She took my name and hospital number. I went to find J to tell him and when I went back upstairs my phone was ringing. 

It was the nurse. A maxfax doctor had finished in surgery and turned up on the ward unexpectedly.

' He says he knows you. His name is H*****. He says to come to the assessment unit at 1pm tomorrow'

Yes, it's the same doctor who has twice told me that it's intact. 

He had better sort it tomorrow, or bleep someone who can, because I'm at the end of my tether now.

I'm supposed to have an appointment with the consultant next week. I hadn't heard anything so rang up to check. Apparently I'm on a waiting list to see him, despite him clearly stating he wanted to see me 2 weeks post surgery.

This is the NHS in 2026.