Out and About

Hubby is on holiday from work, so we have been going out and about in the car. One to give me some fresh air, and I am sick and tired of looking at the same four walls.

I found eating out very difficult, as I am still having to avoid anything with 'corners', sharp bits or too big for my mouth.

I can open my mouth, with about a 1cm gap between my top and bottom teeth - quite hard to ram a nice crusty cob in that gap yet.

Quite a few people have said I have more colour in my face, and look much better. Not surprising, as most of the people who have said this, saw me when I was taking the morphine.

Eventually I went to the loo. I do not have constipation anymore, almost the opposite.

The inside of my cheek is still quite tender and lumpy. The surface is not at all smooth, but all the stitches seems to have gone now.

Palliative Nurse coming tomorrow, and off to see the consultant on Wednesday - to see what the future holds

Emotional

Spent alot of yesterday in tears, absolutely anything started me off. Just couldnt shake it at all.

Just had a phone call from Chrissie, she wont be coming today, she will come on Tuesday morning instead.

I told her that I stopped the morphine on Monday evening, and was coping without any painkillers, even though the pain is not entirely gone. She has told me not to be so hard on myself, and take some soluable paracetamols. To swill them around my mouth before I swallow them.

Told her the counsellor is due to ring me at lunchtime, and asked if it was ok to give her Chrissies name. They can discuss me between themselves whats best to do.

Chrissie also said she is gonna talk to my GP, after my hosptial appointment on Wednesday, about my social phobia, and see if she can arrange for someone to come and see me at home.

When counsellor phoned, she has decided now is not the right time to see me. She did say that any time in the future, If I feel I need some help, in coming to terms of the illnesses that have struck me down over the years, I can refer myself to see her, at any time.
She feels if Chrissie can make arrangements for a community psychiatric nurse to call in to see me at home, and maybe refer me to M.I.N.D. (a local charity), that would be a good road to take.

M.I.N.D. have a drop in local centre, who help people learn how to get back into socializing with others. Others who may find themselves in the same boat (Ok, maybe not on the third go at beating cancer) as me.

DH is now on holiday and will be spending the next week with me, we plan on perhaps taking a few days out and being just a couple.

Washed Out and feeling blue

Feeling very washed out - and looking so as well, according to mother-in-law

Pain is tolerable, but not gone

I also think I have thrush on my tongue, I can see all the red taste buds, they are standing out a mile and so very red and shiny.

Still constipated, Senokot not doing a thing ........ haven't been to the loo in 10 days now (sorry too much information)

I so fancy a crusty bread roll and a chunk of cheese!

It dawned on me yesterday evening, that this was the 2nd birthday that cancer put a kibosh on, was unable to celebrate my 40th, 3 years ago, because I was recovering from my mastectomies.

Palliative nurse coming Friday

Happy Birthday to Me

I decided on going to bed last night - that I was going to manage a whole night without painkillers.

.... and I managed it. But my jaw is so very achy today, and my mouth was so dry when I woke up.

I dont want to be on this morphine any longer, yes, it means I am sleeping lots, but how am I supposed to know when the pain subsides on its own?

I lost quite a few stitches from inside my mouth yesterday, which in itself doesnt make the 'new' skin feel so tight.

The last two weeks have flown by, too fast really. I have had lots of tears, and discomfort, but I would really like to wave goodbye to all of that now .... and start living again.

Sucking Easter Eggs

Its actually quite nice, allowing a piece of easter egg melt on your tongue. Its a shame it doesn't have much of a taste.

Didn't post here yesterday as I slept most of the day, and have only just got up today. I guess its the morphine making me so tired, and at least I am going off quite quickly. Its the waking up I don't like. That pain is there waiting for the second I come to.

Is it toothache?
Is it muscle ache?
Is it nerve damage?

I have no idea, all I do know is that it hurts, the edge has been taken off by the morphine, but it is still there.
The inside of my cheek is not really sore, its more uncomfortable. The reconstructed skin is not smooth, there are plenty of bumps on it, along with the stitches and knots that are holding on tight.
I do get a pain when I move my tongue to the right, like a cramp pain

Tablets:
Morphine: 7am, 11am, 3pm, 7pm, 11pm & 3am
Diclofenic: 6am, 2pm, 10pm
Solpadol: 6am, 11am, 5pm, 9pm
Anti-sickness: 6am, 12pm, 6pm
My normal everyday tablets going to bed: Aspirin, Penicillin, Simvastatin, Omeprazole
2 Different mouthwashes each 4 times a day

Surely I should be rattling soon!

10 days post operation

I am now 10 days since my operation.

This pain is at its worse after sleeping. It is a deep 'bone' sort of pain, that starts at my ear and goes across my sinus. The morphine eases it, but within 5 hours I am desperate for the next dose. Still taking Solpadol and Diclofenac.

I know its a bit of a vicious circle, really. The morphine is making me sleep, which is causing the pain. I have a triangle pillow bought last time cancer popped its ugly head up, perhaps I should try sleeping sat up - just to see if that helps.

I was hoping this far down the line, I would be feeling better.

Swelling and bruising have virtually all gone

Morphine

Well the morphine knocks the pain out for about 3 hours, and then it starts creeping back in.

I am beginning to wonder whether the nerve of a tooth has been aggravated, or maybe I have an abscess under my tooth. The pain is like when you get a 'brain freeze' after eating icecream, except it goes from my ear across my sinus to my nose, and its pretty constant.

Downside is, I couldnt let a dentist have a proper look, as I still can not open my mouth very wide.

I wonder what my consultant would say if he knew I was on 4 hourly morphine?

I just wish the pain would go away and stay away!

I wish I could eat a proper meal! - fed up of living on soup and yogurt

Its my birthday next week, and the chance of being able to go out for a nice meal, or at least have a drink are looking more and more unlikely

Palliative Care Nurse

Last night I was in such searing pain, that my DH phoned the GP surgery this morning, and they have issued me with Oramorph.

At midday my Palliative Care Nurse - Chrissy, called in for the first time. Her first comment was about the bruising around my jaw and neck. Secondly she asked about pain, and I mentioned that I had been prescribed liquid morphine this morning. She asked about nausea tablets also. I said no.
She was straight on the phone, asking for some.

Since then DH has gone and collected some Domperidone, and along with mouthwashes and painkillers the bill was over £30. Just as well I applied for a pre-payment card, and should be able to claim those recent costs back.

Anyway back to Chrissy - she was very kind and softly spoken, she is organising a macmillian grant for me next week (as i am currently not working, and unable to claim any benefits). Her main concern today was getting my pain levels under control, and checking I had the help around me from my family.

She will be back next Friday

In the long term, she is going to help me sort out the social phobia I have.

Pain

Had a searing pain through my cheek bone and along my sinus yesterday for a good few hours. Went to bed taking the maximum amount of painkillers.

Woke up at 12.45am, with something unpleasant in my mouth, the pain was still there, so i rushed off the the bathroom to look.

I had a stringy bloodclot on my tongue, and had is all over my chin too.

I spat it out and rinsed my mouth, it took several goes until it rinsed clear.

The pain is still there, perhaps I need to get some different painkillers. I will talk to the Palliative Care nurse today about it.

Still uncomfy

I was wide awake at 4.30 this morning, with quite a bad pain in my jaw. I was boiling hot and ended up removing my bed clothes.

Counsellor phoned me, and explained, that I would be better to build a relationship with the Palliative Nurse tomorrow before trying to deal with too many emotions at the same time.

She is going to ring me next Friday and see how we got on. If necessary, she will see if she can squeeze me in on the same day as I see the consultant.

Councelling Appointment

The hospital councellor is phoning me tomorrow morning. Its something I should have taken up last time cancer bit me on the bum, but didnt. So I am determined to see it through this time.

Also Palliative Nurse is calling around to my house on Wednesday lunchtime, to see in what ways she can help

Earache

Went to bed last night and have woken up this morning, with quite a bad earache. It is the same ear I am having trouble hearing out of.

May ring drs in a bit and see if it needs a clean out!

We popped down to the doctors and she checked me over. She said my ear was clear. But was sure the that discomfort I am getting is down to bruising. My jaw would have been clamped wide open for quite a long time, she is sure thats whats causing it.

She has given me piles more painkillers, and told me if i need absolutely anything to call

Hot & Sweaty

Feeling very hot and sweaty today, hope I havent got an infection.

Mouth tastes like bad egg, even though DH bought me a baby toothbrush - cleaning my mouth is very difficult

I am talking like I have a plum in my mouth, as in inside of my cheek is still quite puffy.

Bruises seem to be dying down a bit, nice shade of mustard yellow

Concentration is rubbish, and think its time for another lie down

Cried, Cried and did some more crying today

Constipation

Is a huge problem today. I know these Sophadol cause it, but its not like I have eaten much since Monday.

I have managed to loose 6lb since then, and maybe a bit more, if I manage to go to the loo.

Got up early this morning, 5am, needing some tablets. Had hoped to leave off the Sophadol, but its still too painful and gave in by 9.15am

Bruising is lovely all different shades of yellows, purples, reds. Still limited with jaw movement, even though I am supposed to try stretching it, I am finding it a bit hard.

Still very tired. . . .

Path result

I just had a phonecall from the consultant who did my surgery on Tuesday.

The results are back from the Path Lab, and no spread was found in what they took this week.

So although I dont feel well enough to celebrate, I can relax a little, knowing that I dont have a death sentence hanging over my head

Bruised all down my face, under my chin, across my neck - bit of a mess to be honest. So very swollen inside my mouth, can only open my mouth about 1/2 inch.
I have pins and needles in my lips, unable to put my teeth together, and living off icecream!

Will be seen in Head and Neck Clinic on 2nd April

Thursday

Today, I am swollen from my lower eye lid, right down and under my chin and around to the other side of my teeth.

I can not put my teeth together, as it is so swollen inside my mouth also.

Having trouble hearing out of my right ear, and my neck feels like I have mumps

Discharged day

Had a slightly better night sleep.

Mr Merrick came around at 8.15, and said he was pleased with me. He explained that the gap that was made in the buccal mucose of my mouth, was reconstructed with buccal fat pad taken from up side my cheek, and dragged down.

Potassium levels were down to 4.8

Face is very swollen and stiff. I can hardly open my mouth, it is a real struggle to get a t-spoon in with the smallest amount of yogurt on it.

Jo Greedy came and saw me. She is arranging for a Macmillian nurse and a counsellor to call into my home to see me.

I had a few tears today before I left the ward, feeling very sorry for myself. Face is still very red and hot, sat with a fan facing me all morning.

I was told I could go home

DH collected me and we got home just after 12 noon

Was given Solpadol 30/500 plus two mouth washes. But nothing to take down the swelling. So DH phoned GP and immediately got a prescription for soluable Voltaren.

Went to bed at 9pm, completely exhausted

Operation Day

Was laid in bed listening to hospital radio from 4am. I got up and walked down to the corridor at 5.15am and rung DH.

Nil by mouth from 5am.

I was supposed to be 5th on the list of operations that morning. But due to some patients not turning up, was moved to 1st place. So I walked down to the operating room at 9.10

My heartbeat was racing, and just for a little while, I thought the operation was going to be cancelled. I was very red in the face, but temperature and BP were fine. Just nerves, I think.

Two attempts at getting the drip in, but eventually my veins gave in and I was wired up. I had requested not to have the mask put on my face whilst still awake, as I panic. Which was nice, not having that as my last thought before I went out. I had decongestant sprayed up my nostril and next thing I know I was waking up in recovery.

It was about 10.40, buy the time I woke up, and remained there for about an hour. Feeling a little nauseaous. Face was feeling ok at this point. But I wasnt brave enough to stick my tongue on it. I was on Oxygen, and remained hooked up to it, until 8pm that evening.

DH came in at 3.10, I was still quite dozy, but really appreciated him sat there, just holding my hand.

Mr Merrick and anaesthetist came round to check on me during the early evening.

Further bloods done on the evening, to check my potassium levels.

On Declofenec and Tramadol for pain

Had another Celexan injection, just before bed.

Admission Day

Rung the ward at 9am, to be told that there were currently no beds available. At 12.15, I was rung back to say still come in at 2pm as planned, because a bed would be there for me at some point during the afternoon.

Once we arrived, we had to sit in reception for half an hour. A doctor called me into a side room and went through my admission bits and pieces. He also told me that the original lump that was removed was low grade - the best possible outcome!

I was shown to my bed, and DH stayed with me until chucking out time (8pm). Mr Merrick popped in just to confirm my concerns regarding my facial nerve. He told me that it would not be affected, as the tissue was being taken from above my cheek and not below it. So therefore being the wrong side of the nerve.

I was measured from TED stockings and given a Celexan injection (to thin my blood)

Didnt sleep at all, all night, tossed and turned.

Todays the Day

Been up and about since just before 3am, I cant sleep. I have this sick feeling in my stomach.

I have to be on the ward at 2pm, so will be leaving home at 1.15.

Just before going to bed last night, a friend sent me a snippet from an american website.

Risk Factors The most well known cause is exposure to radiation, either in the environment or as treatment for a cancer of the head and neck area. Exposure to sawdust and chemicals used in the leather industry, pesticides, and industrial solvents may increase the risk of a type of salivary gland cancer that occurs in the nose and sinuses.
Mucoepidermoid Carcinoma is the most common malignancy in the parotid gland. It can be low grade, which is slow growing, and relatively less aggressive, which makes it easily treatable through a complete surgical excision

This has got me thinking.....
Should I attempt to claim compensation from the NHS?
My DCIS was definitely caused from the radiotherapy I was given in 1981. It also looks like this in my mouth may also stem from that too?

More help

I had a phone call from the Macmillan helpline today, which was in response to the email I sent. It was an Indian lady who was very helpful.

She has told me that I should ask for Macmillan Support at home.

She also gave me the Macmillan helpline, and told me it was a free call, and I could ring about absolutely anything, if i just need someone to talk to, any time of day.

Plus she is sending me some info about financial help, as I wont be working for minimum of 6 weeks.

A Few Questions Answered

Spoke to Jo Greedy today.

Managed to ask her a few questions.

I am expected to be in hospital until at least Thursday.

Dissolvable Stitches

Results will be following week.

Minimum of 3 weeks off work (at this stage)

Facial nerve wont be affected, if they go in through my mouth.

No CT/MRI/Xrays have been suggested for me

Path result regarding High/Low grade isnt back yet.

Wouldnt commit herself to any follow up treatment/surgery, until this next step is done.

She is gonna chase copy of letter to GP, that was gonna be sent to me

Then phoned my Gp to ask about blood results. Potassium levels were better.
APTT (Activated Parital Thromboplastin Time) was 0.6. It should be 0.8-1.2

High Potassium Levels

Doctors just rang

I have to go for more bloods on Monday.

The results of the bloods done on Wednesday, have come back with very high potassium levels. 5.7

Macmillian Nurse

Macmillian Nurse just rung she has never known anyone with it. She has offered me counselling after surgery I have a direct number for her.

There is a drop in centre at the hospital open 9.30 - 4 daily

She is gonna get Jo Greedy (neck and facial cancer specialist nurse) to ring me tomorrow

Didnt actually feel that she was much help, as obviously she deals with 'cancer' in general. But hopefully this lady tomorrow will be able to answer some of my questions, even if it means going to to consultant and then back to me

I just wish DH and I were not sat like statues in the same room. He cant answer my questions, nor me him. So we dont communicate - I hate it

Why is it people all of a sudden feel that they cant talk to me.
Am I so unapproachable now.
Feeling really down in the dumps today - but still no tears

More Bloods

Had more blood taken today, to check my potassium levels.

I have avoided ibuprofen and booze, so if it was anything I was taking, that shouldn't affect it now.

Presumably Wednesday with the results, I will ring my surgery and find out.

Feeling a bit down today.