Wednesday, 10 April 2013

Final goodbyes

Well today was a brilliant day. Went for my 6 monthly check up at Musgrove Park Hospital to see Mr Merrick. Nice and early appointment I was first on the list. He examined me and looked at my notes and was delighted in telling me that he didnt want to see me anymore. March 2013 was the 5th anniversary of my operation. I was really pleased to have to say goodbye to him. He is a lovely consultant and would recommend him to anyone.

Wednesday, 10 October 2012

54 months on

Well its been almost four and a half years since my operation and initial diagnosis, I am well and healthy and enjoying life. My new job is great, with lovely group of people to work along side. My visit with Mr Merrick today was good, he is still very happy with my progress and still with no sign of recurrance. He had a student in with him today who also had a good look inside my mouth.

Wednesday, 7 March 2012

March 2012

Another check up at the hospital, all good, no lumps or bumps to report, see me again in 6 months

Tuesday, 3 January 2012

New Year, New Job

I start my new job tomorrow, in another local independant Opticians. Quite nervous but excited at the same time.

Wednesday, 30 November 2011


Well my health is going brilliantly. No problems what-so-ever.

But work wise its not so good, I was told along with all of my work mates that head office would be shutting the practice on 30th November. So I am now unemployed as of 5pm this evening.
I have been for a couple of interviews, but I am not very good at selling myself, and unfortunately have not been lucky so far.

At least my house will have no excuse for clutter or mess.

Back at Musgrove for a 6 monthly check up in January with Mr Merrick

Wednesday, 6 July 2011

6th July 2011

Today was my 6 monthly check up, and thankfully once again, everything is fine. Takes longer to get over to the hospital and find somewhere to park, than it does the time I am in with the consultant. He will see me again in January 2012 !! Yippee . .

Tuesday, 15 February 2011

6 Years ago today

Was when I had my bi-lateral mastectomies. This is a posting from a diary I was keeping at the time:

Ended up being 3rd on list last Tuesday, didnt go down to theatre till 2pm. Was not back on ward till 6.30. I was put into a side ward on my own. Had 2 drains, one of which gave me a great deal of pain. Which was caused by the tube touching a nerve (thats what the drs said) They were giving me morphine injections, but due to the discomfort of the right drain, i ended up being on a PCA, which knocked me out for almost 24 hours. Once that drain was removed on the Thursday the pain was much more bearable. Couldnt come home till Sunday as i got an infection in my arm where the canula had been, so was put on another set of anti-biotics for that. Went back to breast care clinic yesterday (monday) and had 400mls of seroma drained off, already building up again so expecting another load to be removed on Thursday when i have my stitches removed. Scar is 17 1/2 inches long, from under one armpit to the other.
Had another 450mls drained off the same day as my stitches were removed. Told to take some Senna cos I am constipated. Went back on on 28th Feb and another 425mils were removed, making over a litre of fluid being drained now. Chest starting to get quite tight with less fluid cushioning it.

I think I have come such a long was since then, still have down days - but at least I am still here!

Thursday, 12 August 2010

6 Monthly check up

I had my 6 monthly check up with Mr Merrick today at Maxilo Facial. He was delighted that I have no lumps or bumps and everything is looking fab.

See me again in 6 months - woo hoo!!

Monday, 14 June 2010

Lung test Results

I received a letter today from the consultant, to say that my lung test results were normal.

Wednesday, 5 May 2010

Lung Function Tests

My appointment for Lung Function Tests has come through. 8th June, at Taunton.

Not too sure what this involves, but it says the appointment could last an hour.

Wednesday, 28 April 2010

Respiratory Clinic Appointment

Saw Mr Pepperell today for the first time. He was very interested in my medical history (as are most people in the medical profession). He was quite astounded at the thickness of my file - over 3" thick.

He looked at my CT scan results and yes he could also see mosiac patterns, some white, some black and some just grey matter.
The black areas he thinks are areas that either have air trapped, or could also be where the blood vessels have narrowed.
If I had had chemotherapy, he would have expected there to be damage. But all in all he is not certain what it is.

As I am now painfree, and not at all breathless, he would prefer to leave well alone. He could offer me further xrays and scans to see if it has gone, but that would only open me up to further radiation damage.

Radiation can shrink vessels in the lungs, which he seems to think this may be the problem.

He is having a meeting with radiologists over the next few days, and I will be discussed to see, if they have any bright ideas on what this could be. I will hear the outcome of this meeting by letter.

He did say that he didnt really want to go down the lung biopsy route, at this stage.

Anyway it has been left that I have an open appointment, and if I ever feel poorly like that again, I must ring his secretary and she will get me an appointment with him, very quickly.

Saturday, 27 March 2010

Pain gone!

Physically feeling tons better today

Tuesday, 23 March 2010


Been to the doctors again today. Having constant pain in lower ribs on left hand side, which is piercing right through my back, and up my neck. Anyway she seems to think its muscular (Costochondritis) and could take a while to go away. She has given me co-codamol 30/500, which if nothing will help me sleep. She has asked for a chest xray too.

Thursday, 11 February 2010

Referral Appointment

My appointment for Respiratory clinic - 25th Feb at 5pm

Wednesday, 10 February 2010

Hard to lift my mood

Saw my Maxillo Facial consultant today, for my 3 monthly check up. He is very pleased with me. No new lumps or bumps to be seen or felt. As its coming up for my 2nd anniversary since the surgery, he has promoted me to 6 monthly checks from now on. Obviously this is a good move, from my point of view.

BUT I feel so down at the mo, I just seem to slip from one illness straight into another. My mouth is still rank, and although using this Nystan, doesnt seem much improvement yet. I am constantly tired, and lack enthusiasm, to do or go anywhere.
Hoping this will lift soon.

Monday, 8 February 2010

Oral Thrush

You know what its like, you start to feel much better, and something else bites you on the bum!

My tongue and inside the whole of my mouth is covered in a white furry matter, with lots of little blisters on my tongue too.

I have tried, hot salt water rinses, bought some Dequadin and still its very sore and quite umpleasant.

So contacted GP today, who has prescribed me Nystan. Hope this works pretty quickly

Friday, 5 February 2010

Blood back to what it was in 2006

Dr is happy, CRP level is now 11. Which I know is high, but she feels that my levels would be high - due to my immune deficiency. Further bloods to be done on 16th, just to check they are behaving.

Tuesday, 2 February 2010

Talk about Above Average!

Been drs this morning. CRP levels should be between 1 - 3. Above 3 is high. Mine were 129 (one hundred and twenty nine) last Tuesday. When it was done at the hospital on Thursday it was down to 68. Bloods redone today.
Have another appointment on Friday.
Doctor has no idea about these mosaic patterns on my lungs, hense the referral to respiritory clinic.
But on the whole feeling alot better. Gonna give work a try tomorrow.

Saturday, 30 January 2010

5 tablets down - slight improvement

I have now taken 5 of these super duper anti-biotics. And thankfully they seem to be working. My pain is more of a dull ache now, in my chest. My shortness of breath is definately improving to. My energy levels are pretty low, and I keep needing to go to sleep.
My arms and wrists are covered in bruises.

Woke up this morning with a runny nose, and tickly cough, whether that is connected to my chest problems, I am not sure. But would much prefer a bad cold, to what I have been suffering for almost a week now.

Friday, 29 January 2010

Acute GP Care Unit

Was a long day yesterday. Got to drs at 8.50, to then be sent home and await a phone call from Acute Gp Care (based at taunton hospital) at 10am. Was told to go straight in and to take an overnight bag just in case. Rung Dave, he came home and we were in the ward (!!!!) just before 11.
I was sat in an armchair for the whole duration, apart from when being sent off for test etc. I knew it was gonna be a long day. I told Dave to go home at 1.30, as he was so behind at work, and although he was happy to stay with me, I knew he would only have to do it when we got home.
So Dave left, and I attempted to read my book, no chance, so many people coming and going.
Eventually got taken down for a scan, and they had to put the drip into the inside of my wrist as all my veins had fucked off somewhere by then. They had already had 3 goes in one arm and two in the other for bloods. Its so painful in your wrist. On previous CT scans, I hadnt needed a drip, so that was new to me. It was so it would show up my blood vessels in my lungs. So painful when the fluid was turned on that I let out a wince.
Anyway by 5.25, eventually got the results of the scan, and was told that they hadnt found what they were looking for (P.E.) so would be sending me home with anti-biotics. So to be honest they still dont know whats causing the pain, or the raised CRP levels. And they just hope that the antibiotics with knock it on the head.
Havent been brave enough to look up mosiac shadowing yet - scared shitless it will be cancer !!
So all tests etc probably havent finished yet, still on stricked instruction to ring 999 if I feel worse before I see GP (probably Tuesday) which is not at all re-assuring really.

These were the results of yesterdays hospital visit. (copied from letter I have to give GP)

Chest Xray - No obviously infection, No Pneumonia
Bloods - Raised Inflamm markers and Neutrophilia
CT Scan - No Pulmonary Embolism, but mosaic pattern shadowing on lungs

Needs to be refered to Respiritory Clinic
To have Bloods repeated next week
On one weeks Clarithromycin 500mg

Wednesday, 27 January 2010

C Reactive Protein

dr just rung. ECG ok. BUT my bloods are showing a high level of the C Reactive Protein, my GP is not at all happy, and I have to go back at 8.50 tomorrow. With the possibility of being sent to the hospital for Aqute Testing !!!

All fun and games in the Englefield house!

Tuesday, 26 January 2010

Bloods and EDG done. Still feel quite poorly. Dr looking at ECG this afternoon and will ring me with results if anything to be alarmed about. The only thing the nurse said was i had a fast heartbeat.
If i hear nothing today, I have to ring on Thursday afternoon for blood results, and take it from there

Chest Pain

Went to bed last night at 9pm, and fell asleep quite quickly. Woke up for a wee at 10.20, with a really bad pain in left side of neck. Felt like my gland was up. Only a few minutes later the pain moved down into my collarbone, and then sat in the bang centre of my chest. The pain is like a crushing pain and although there all the time, catches me on every breath in. Was up all night, debating whether I should ring an ambulance.
Went to doctors today, who is a little concerned. I have a slight temperature. My BP is normal, my sats are 98%
She has booked me in for an ECG and blood tests tomorrow.
Feeling very sorry for myself, still in pain and now very very tired
Was told if pain gets worse, or I feel nausea or breathless to ring 999 overnight

Thursday, 7 January 2010

Oncologists Reply

Dear Mrs *****

I apologise for the delay in replying to your letter but I needed to review your notes to obtain the information that you require.

You presented with stage IIA Hodgkin's disease in 1981 and received mantle radiotherapy at a dose of between 35-39 Gy.

There is an increased risk of second cancers in patients with a past history of Hodglkin's disease whether chemotherapy, radiotherapy or combined treatment is required. Cancers related to radiation usually arise within the radiotherapy field and it is therefore likely that your past history of breast cancer is a consequence of mantle radiotherapy.

Your other two cancers are likely related to suppression of your immune system as a consequence of your past history of Hodgkin's disease and neither of these would have been detected by CT scan. Routine surveillance CT scans are not indicated in this situation as the pick up rate is low and each scan involves the administration of a significant dose of additional radiation.

Vigilance is required to monitor for future problems and any unexplained symptoms should be reported to your GP. Avoidance of risk factors for cancer (eg smoking) and active involvement in National Screening Programmes (eg cervical smears) is also to be encouraged.

If you require any further information then please do not hesitate to contact me.

Kind Regards

Friday, 11 December 2009

Swine Flu Jab

Had my swine flu jab yesterday, arm a bit heavy, and generally feeling a bit achy.

Thursday, 10 December 2009


Dear Mr B**

Ref: ***

As I was discharged from Mr Steve ****’ clinic back in 2006, I thought I should keep you informed of my ‘cancer’ history since then. As it may be of some interest to you.

As you know I was diagnosed with Hodgkins Disease in 1981 at the age of 16. I was treated with mantle radiotherapy, and surgery. Thankfully making a full recovery.

In 2005, Ductal Carcinoma In Situ was diagnosed in my left breast, which through my choice, I had a double mastectomy.

In 2008, Mr Merrick (Maxillo Facial) diagnosed Mucoepideroid Carcinoma inside my mouth, this was treated with surgery. I am currently on 3 monthly checks.

Yesterday, my GP diagnosed Basal Cell Carcinoma on the right hand side of my neck, which was removed under local anesthetic in his surgery

I am positive that all these subsequent carcinomas are due to the radiation I received in 1981. Would it be possible to tell me what stage my Hodgkins was and what dose of radiation I received?

I was also wondering if, given my seemingly ongoing medical conditions, it would be possible to have a periodical scan, if only for my own peace of mind. If that is possible who would I need to arrange that with?

I look forward to hearing from you

Tuesday, 8 December 2009

Results back eventually today, by letter. It was a Basal Cell Carcinoma. So yet another cancer to add to my list. Feeling very pleased that its all gone, but upset at the result

Friday, 20 November 2009

Stitches out

Stitches out today, the nurse said i healed very well. The line is quite red, but only about an inch long. No results back yet!

Wednesday, 11 November 2009

Mole Gone

Gosh that was a bit sore, I have 3 external stitches and a couple inside. The actual surgery wasnt too bad, but the huge dressing on it is irritating my neck and making the sore area even bigger.

Went and bought some different dressings and trying to leave them off when possible. Not allowed to get it wet - fun washing hair!

Stitches out next Friday

Thursday, 5 November 2009

Went to see Gp on Tuesday

I have an odd mole on my right hand side of my neck which has only probably been there for 18 months or so. It dries up, cracks and then bits fall off, it then bleeds and regrows.

GP thinks its sun damage, I am not sun worshipper, and never been on a sunbed. So I believe its from the radiotherapy I had when I was 16 for Hodgkins Disease.

Having it removed under local anaesthetic next Wednesday at the Surgery

Wednesday, 4 November 2009

November Appointment

Once again Mr Merrick is happy with me. Pointed out about the potassium levels in my last blood test, but put it down to the medication I am on. Not back to see him now until 10th Feb 2010

Wednesday, 5 August 2009

August Check Up

Went to see Mr Merrick, all very happy with my progress, no obvious lumps or bumps to be seen or felt.

Back again 4th November

Wednesday, 22 July 2009

Julys posting

I almost forgot to update you all.

We spent a lovely holiday in Spain during this month, temperatures reached 46 degrees in the sunshine. It was a good week to unwind, relax and to remind my hubby who I was.

Health is fab, apart from not being able to loose any more weight. I know I let it slip whilst away, but been good since I been back. If it doesnt get shifting, the doctor will take me off of the Orlistat.

So back to the Gym tonight, to pump those machines,and get my body burning fat - well I can hope, cant I?

Back to see Mr Merrick on 5th August, for my 3 monthly check up. He has said previously, that he would be happy for me to transfer to my local hospital under a different consultant after this visit if I wanted. But think I am happier with the person who operated on me, and with whom knows my history and makes me feel comfortable. So I will stick with Mr Merrick, after all he did save me from this tumour last year!

Thursday, 18 June 2009

June General Update

Thought it was about time, I posted here. Health wise everything is fine. I phoned my GP to get results regarding thyroid. No abnormal results ... so that was good. Will just request that Mr Merrick monitors the nodes that were picked up on my MRI fairly frequently.

Since posting last time, I have joined a local gym. Attended two fitness classes so far. One is just women, doing areobics, and the other is Circuits, where we alternate between exercise machine and cardio workout every 45 seconds. I really enjoyed it and hope it will boost my weight loss!

Working quite a few extra hours, as some of the girls are on holiday and we have to cover the hours.

Not much happening, between work, exercise and sleep at this end.

Will update you all again during July

Tuesday, 19 May 2009

Race For Life 2009

I took part in the Race for Life on Weston Super Mare sea front on Sunday. It was pouring with rain. A very emotional day, with lots and lots of people taking part.

I did attempt to run, but running on sand in rain, when you havent done any training is pretty hard going, and I probably lasted 20 seconds (at the most). But walked a very brisk walk and completed the 5km distance in 52 minutes, running across the finishing line.

I do have two very sore areas the back on my heels, from my trainers rubbing, but I am so pleased I took part.

Well Done to every who has or will be taking part this year - Keep Up The Good Work

PS. No news from hospital with reference to thyroid - so I am assuming no news is good news!

Thursday, 7 May 2009

Thyroid .....

Had to go to musgrove park hospital myself yesterday for my check up. My consultant is happy with me, except nodules on my thyroid have been detected (via MRI). The majority of nodules found generally are benign. But as I have 6 he is a little concerned. There is no swelling in my neck, and I do not have any symptoms that my thyroid is not working correctly. Sent me for a thyroid blood test and full blood count - fingers crossed - I dont want to go through anymore of this shite.

The funny thing is - I had reflexology a few months ago, and that was the one thing that was picked up - but I didnt really think reflexology worked .... I do now!

Also havent lost any weight this month, and I have been so good. Time to up my exercise I think.

I am taking part in the Race For Life on the 17th May, on Weston sea front

Monday, 30 March 2009

Before and After photos

At the age of 12, I chipped both my front teeth. After 30 years, I was brave enough to get them fixed, and this was the result

Wednesday, 18 March 2009

MRI on Sunday 9th March

Had my first MRI on my head and neck area last Sunday. Quite a daunting machine. Strapped down to a table, whilst listening to Phil Collins. Took about 30 minutes I guess.

Still not had any results back, which I am hoping no news is good news. Also still awaiting my next check up appointment.

Managed to keep taking my orlistat whilst on holiday in Austria. Didnt loose any weight, as most of the meals were served in a cream sauce, even the soup had dollups of cream on it. Had a beer every night too. But didnt gain any weight either, so was pretty pleased with that.

Back to work today, after almost a two week break. Still shattered from the holiday, but will soon get back into the swing of it.

Wednesday, 18 February 2009

extended to 3 monthly

Hospital appointment went ok, although he was running rather late. Wants to see me in 3 months time (woo hoo).
But I will be having an MRI done in 4 - 6 weeks, as a yearly precaution, obviously any problems, I will be contacted sooner than the three months

Tuesday, 10 February 2009

Start of 3rd week

Three weeks since I started Orlistat. I have lost 10lbs in those 3 weeks. I am not hungry and coping quite well. I've not cheated once, no chocolate, no crisps, no biscuits etc

Weather here has been pretty bad, lots of snow, schools shut. Not sure whether I am looking forward to going to see 'more' snow in Austria, almost snowed out now.

I have my 6 weekly hospital check up next Wednesday, hopefully that will go the same way as all the previous ones have, with the 'all clear'

Sunday, 25 January 2009

Day 7

Day seven of taking Orlistat. At the beginning of the week, I was so tempted to chuck the whole thing in. Suffered from backache, headache and fatigue. Those symptoms seem to be lifting now.
I also bought myself some extra vitamins yesterday. Vitamin E and Beta Carotene, which apparently get lost whilst taking these pills
I'm not due to the drs for a weigh in until Monday 2nd Feb, but will weigh here tomorrow to see how I have done in the first week.

Getting quite excited about our holiday to Austria, only 6 weeks away now, already bought the snow boots. Just me and the hubby, no kids, phones, internet etc.

Tuesday, 20 January 2009


First day yesterday taking Orlistat

Went to bed last night with a thumping headache, and woke up this morning, feeling like I have been run over by a bus. Head still hurting.

Not sure if this is the effect of the tablets, or something else .... will stick it out a bit longer and hope it passes

Thursday, 15 January 2009


My Gp prescribed me Xenical(Orlistat) today, after i asked her too. They actually help you not to digest the fat from foods. So taken 3 times a day, with a very low fat diet, they SHOULD help with weightloss. I shall be monitored quite closly at the doctors, being weighed every two weeks. Fingers Crossed

Friday, 9 January 2009

Still Happy

Saw my consultant on Wednesday, no problems at all. I asked if he did a clinic more local to me, and he said his colleague did, but he didnt want to transfer me until I had been clear for 18 months. So as it stands at the moment. I have another appointment in Feb, one beginning of April. We will then be upto a 12 month, so my appointments go from 6 weeks to 3 monthly. Mr Merrick will see me twice following that, so July and October, and providing alls well, he will transfer me to my local hospital.

I am considering going to my dr next week, and asking if they can prescribe me Orlistat. I really have trouble losing weight, and I know these have to be taken with a low fat diet plus exercise, but it might give me the boost i need

Thursday, 4 December 2008

recovering from a flu-type bug

This bug has knocked me side ways. So much for the flu jab protecting me!

Started off an achy feeling, which slowly took over my whole body, and a temperature. I then lost my voice, and was left with a hacking cough. It wasnt until about day six until my nose started running and I got a thick head, which was more like a cold.

I am hoping to go back to work tomorrow.

Forgot to mention. Dr said I had a virus when I went a few weeks ago, probably the start of this bug.

Hubby, did get some wages, which will mean we can pay the bills and buy some food. Not too sure about being able to afford xmas pressies though.

Thursday, 13 November 2008

Consultant Happy still

Mr Merrick was really happy with my mouth. I mentioned the pins and needles, to which he said it was probably scar tissue, building up around the nerve. I told him it was painful, and that I could cope with it. He wants to see me in 8 weeks time.

I have been having a constant ache in my stomach/chest sort of area. Its been there for most of the last three weeks. I cant make my mind up whether its the lining of my stomach thats been aggrevated by my aspirin. Or whether its my muscles in my chest. I've put it off for a few weeks and have decided today to see the GP at 4pm. I am hoping its just stress related and nothing more. Obviously, being a cancer patient, it doesnt take much for the brain to run away with itself. Is it my heart? Do i have an tumour in my stomach? Are my lungs playing me up? etc etc.
It doesnt wake me at night, its just there when I get up in the morning, exactly the same as when I go to bed. Food doesnt aggrevate it, neither does alcohol.
Of course it could be down to being overweight and just putting a strain on my body.

I am off work this week, and not really had much time to myself, thankfully my boss doesnt want me in until next Thursday, so it almost runs into 2 weeks . . . she is so kind!!

Oh by the way, I havent taken a Prozac since 20th October

Wednesday, 5 November 2008

Ups and Downs

Life at home, has become rather stressed.

My son has split with his girlfriend, leaving a 9month old boy between them. Obviously my son and both myself and my hubby still want to have access to him. Which at the moment is not very forth coming.

My hubbys employer has changed, and we are still awaiting wages due to him since July.

My health is ok - I hope
I had my flu jab on Monday, and I have my check up at the hospital next week. I have noticed that recently, every time I move my tongue over the right hand side of my mouth, I get a 'pins and needles' feeling all across the lower part of my jaw. I am assuming that is the nerve doing that. I will ask my consultant on Wednesday.

I have decided that I am too overweight. I must do something to try and reduce it. I love my food and have a very sweet tooth. I do walk to work every day, but that is about all the exercise I manage. Course, having no boobs makes my belly look even bigger than it really is ....

Tuesday, 21 October 2008

Good News

My part time temporary job, became a permanent part time job today. I am really pleased, the bunch of girls I work with are great.
I am so happy

Wednesday, 15 October 2008

Please Help

Can I ask a huge favour
Please sign the above petition, to attempt to save something very dear to our hearts
Sue & Dave x

Tuesday, 16 September 2008


Today I decided not to take my Prozac. I am going to take them every other day for a week or two, and see how I go. With the hope of coming off them completely.
I do feel quite positive at the moment, what with the new job and new friends, I am enjoying life at the moment.

Hubby has decided to take me off to London for a few days next week, we are currently looking at possibly going to a west end show ... not sure which yet! Any recommendations?

Sunday, 14 September 2008

1 hour 15 mins

I completed the Midnight Beach Walk in 1 hour and 15 minutes. Sam (my boss) and Kira (daughter in law) took part with me too. It was a clear night, with a full moon.

There were over 1300 women taking part, alot of which were wearing flashing rabbit ears. With both me and Sam dressed in our outfits, which seemed to cause alot of publicity.

I have managed to raise £350 for the local hospice - which I am really pleased with.
I am now about to crawl into bed!

Thursday, 11 September 2008

Sponsor Money goes up!

Doing brilliantly so far with the sponsorship.

Have currently over £300 sponsorship, which £130 has been made online

Would be fantastic if we could top £500!

Thank you to all those who have sponsored me so far xxxxxxx

Thursday, 4 September 2008

Saturday, 30 August 2008

I had three different sets of photographers come into the opticians yesterday, from different newspapers and they all had me posing in my bunny outfit. I have persuaded my boss to join in with me, and I am able to borrow another bunny suit for her too.

I was VERY brave yesterday. Although I attend my NHS dentist regularly, I dont feel they are doing their best. It was me who had to point out about the lump in my mouth and insist that I was referred.I also need a filling, and its only recently that I can open my mouth to the full extent, to allow this to be done. So I registered with a private dentist. I have an appointment next Friday afternoon. I am also going to ask if they can do something with my two front teeth. I chipped them at the age of 16, and thats the way they have stayed. I know it will be expensive, but perhaps spread over a length of time will be more manageable.
By the way - I dont like dentists at all!

Monday, 25 August 2008

Fancy Dress Costume

Today, I have borrowed a pink fluffy rabbit costume from a friend, to wear for the sponsored walk.
I hope it doesnt rain, as I will look like a drowned pink rat!
Please sponsor me

Wednesday, 20 August 2008

Another check up!

Went to hospital this morning, for my monthly check, due to the hospital cancelling my appointment it was 7 weeks since I was seen last time.
Mr Merrick was very pleased with me and said everything had healed up perfectly well, no further bumps and he would see me again in 6 weeks.

I have also registered to take part in the Weston Hospicecare's Midnight Beach Walk 2008. It takes place on Saturday 13th on the seafront. I'm hoping to raise lots of sponsorship money!

My job is going fantastically well, I am really enjoying it. The girls I work with are really friendly, and it is never too much trouble to give me a hand/advice. I am truly grateful to my boss, for giving me this opportunity.

I went to visit one of the lads who was on my 'old school bus' today. He was so pleased to see me, I will miss him, as he was on the bus right from the start of that 5 year job.

Saturday, 9 August 2008

Counselling free

I started my new job last Saturday. I am really enjoying it. Alot to learn, but all very interesting.

I went for my counselling session on Thursday, and she was so pleased with me, that she doesnt want to see me any more. She feels that since passing my driving test, my confidence has grown tremedously. I do agree with her, although I do try and 'face my fear' rather than hide away from it now.

I am working 23 hours this coming week, and I expect I will be exhausted by the end of it. But I feel like a new person. Someone who is doing this through choice and not through necessity.

I'm back to see Mr Merrick (Maxillo Facial surgeon) on Wednesday 20th August, for my monthly check-up

Thursday, 31 July 2008

The last Month

July has been quite a good month for me and my family.

We went over to Spain and stayed in a lovely place, weather was fantastic, accommodation was brilliant and we all came back home with a healthy suntan.

I applied for a different job, and have been accepted. I start this Saturday, in a local opticians.

My twins are both now working quite a few hours, whilst on the summer hols from college, and everyone is happy

My grandsons are growing and are both adorable little boys, who I love spending time with.

I did receive some bad news recently, a cyber friend of mine passed away, unfortunately her cancer had spread too far. She was only 32.

I attended A & E after a suspected DVT. After blood tests, ultra sound and Clexane injection, I was declared clot free. I have been left with a massive bruise on my tummy from the jab though - but rather that, than the consequences of a blood clot.

I'll try and not leave it quite so long before I post again.

Tuesday, 1 July 2008

Driving myself!

I'm off for my monthly check up at the maxillo facial clinic tomorrow, but this time I am driving myself there.

Also due to collect my new prosthesis too, so I shall have a nice new pert pair of boobs tomorrow.

Fingers crossed all will be well, and I will then be able to enjoy my holiday. Off for two weeks with the family from Sunday, for a well deserved break!

Sunday, 15 June 2008

My Beautiful Grandsons

New Grandson - James, born 14.06.08

We had grandson 1 - Riley (born 16.01.2008) to sleep last night

Wednesday, 4 June 2008

Monthly checkup

Mr Merrick must have been on holiday today, as I had to see a different doctor. But he was very pleased, could find no trace of recurrance and was very pleased at how quick I had healed up. Will see me again on the 2nd of July

I also drove home from Taunton (12 miles), and we arrived home in one piece!

Thursday, 29 May 2008

Confidence Boost

Well I have been given the biggest confidence boost ever this morning. I managed to pass my driving test (4th attempt) - I am so chuffed!

Tuesday, 27 May 2008

Back from Counselling

I just got back from counselling, and we went off on a tangent today. We spoke about my cancer, and my fear that it will come back. We spoke about the way it has changed my day to day life, and how I wish I could box it away, and move forward.

I explained how I felt about M.I.N.D. and that it wasn't the right place for me to be. But as my therapist said, It was a case of trying and finding out.

I told her how I had been for a job interview (which I didn't get the job) and how I have my driving test later this week - all steps in the right direction.

I have started reading 'Feel the Fear.... and Do It Anyway', which was recommended to me by a friend. A very good read, about confidence and self esteem

I have a Dr's appointment tomorrow, for a review on the Prozac. Which I feel are doing me the world of good. My head is not so jumbled, and I am able to make proper decisions once more.

Sunday, 18 May 2008

Not much happening

Been a fairly dull couple of weeks really.

Haven't been back to M.I.N.D. since 2nd May, due to stomach bug, and had something planned for last Friday.

Had to cancel my counselling appointment too, due to bad stomach.

Had another funeral on Wednesday, and a driving lesson on Friday morning.

I have applied for a new job - fingers crossed, cos I think I need a change.

I can get 23/24 sticks in my mouth now - which I am pleased about. Still a bit numb in the cheek area, which I keep biting.
Prozac seem to be working wonderfully. Not getting too stressed over anything now!
Life is improving and I am beginning to enjoy it once more.

Wednesday, 7 May 2008

Hospital Check Up

I had an appointment with Mr Merrick this morning, at 9.45. DH managed to record the last part of his show and come with me.

We went in about 20 minutes late. Mr Merrick was pleased to see me, and asked me how wide I could open my mouth, he was happy with the result

He examined my neck and face, before looking inside my mouth. He had a good old feel about and said although it was hard and lumpy - it was only scar tissue.

He wants to see me in one months time. Monthly appointments will occur for the first year!

Monday, 5 May 2008

Self Hypnosis

I am prepared to try most things, in the hope that it will increase my self confidence.

So I bought a Self Hypnosis CD, in Self Confidence and Self Esteem.

I laid on my bed with the CD playing in the DVD player. All was quiet and I was able to relax completely.

I have no idea what was said because I fell asleep! But did wake up when he counted back from 3 - 1.

Haven't noticed any difference as yet

Saturday, 3 May 2008

M.I.N.D. Centre

(If anyone from M.I.N.D. is reading this, I apologise if any of this posting offends - its not suppose to, its just how I feel today)

Came away from the centre yesterday, very deflated.
Arrived there about midday and sat in the kitchen area. I do not like getting up and being centre of attention, so I opted not to make myself a coffee.

There were quite a few people in the kitchen.

Now don't get me wrong, they all are individuals who have either had total breakdowns, recovering alcoholics or drug users. And I am sure they all benefit from being at the centre. None of them are able to work, due to their various problems. All either help out at the centre or do some sort of voluntary work.
BUT I don't feel that I am in the same league. I was so embarrassed to admit having a driving lesson in 2 weeks time, and I wouldn't be in.

Anyway lunch there was delicious, two of the members did the cooking and we had lasagna and salad.

After lunch we had a reading/writing session for 30 minutes. Where about 6 of us had to write a list of' "You Know You're Getting Older When ........."
Next week its a show and tell session

I did have the option of going up an allotment and helping to paint a shed - I chose not to!

A huge part of me wants to chuck it in. I'm not sure its what I want/need. I would have rather sat at home watching Jeremy Kyle. I just need to gain my confidence with people ..... but people I can actually have proper conversations with

decisions decisions .....

DH says stick it out for a few more weeks, it may improve.

Tuesday, 29 April 2008

Todays Counselling Session

Counsellor filled in my referal form, and thought the idea of me putting myself forward for M.I.N.D. was a brilliant idea.

We managed to access that its the whole 'meeting people' that I am not comfy with, and if I avoid going out, then that takes that risk away.

We spoke about how I feel about myself
She asked me how I would feel if I was out with DH and walked into someone I knew. I told her that I would hope they wouldnt talk to me. I hoped they wouldnt ask how I was feeling. I feel that I have nothing of interest to say to people. I feel that anything I do say, comes out all wrong, which makes me look stupid

She asked about why I feel stupid - What evidence that I am stupid do I have? I dont have any evidence, except the job I do, tends to be for retired people, or people who are just propping up a part time wage. This in turn does make me feel that I am doing a job which is the bottom of the pile.

She asked me how I felt when I got cancer for a third time?
I told her it made me feel that I must have done something really bad, for me to get it three times, by this time I got a little tearfulI also now feel that the 4th time is just around the corner, waiting to knock me down again.
I told her I was scared and didnt want to die (at this point the counsellor wiped a tear away from her face). I apologised for upsetting her.

She wants to see me in fortnight, and for me to keep another diary of my anxious situations during that time.

Monday, 28 April 2008

When Panic Attacks

"When Panic Attacks" - Aine Tubridy

I have been lent this book from my local M.I.N.D. office. I have only read 6 chapters so far, but it has opened my eyes to what I have been dealing with for years.

Some of the things that have happened to me over the years, are actually symptoms of panic attacks - they have just not been picked up by my GP. I have spent many a time, sat on back door step, hyperventilating. I also have been caught in the middle of town, with severe chest pains. ECG picked up nothing. Waking in the middle of the night soaked with sweat - all these things and more are down to panic attacks

In Control

I have had a good weekend, feeling quite calm and relaxed today. No mad moments of stress or the screaming abdabs.

I think the reason for me to be feeling a bit better, is because I am slowly taking control of my life again.
I have counselling tomorrow, my Aunts funeral on Wednesday and I will be back at New Directions on Friday. I think having some structure to my week helps enormously.

Chrissie phoned today, to ask how I was. Told her that I am feeling quite well, mouth has healed well. She will not be ringing me again, but I have been told should I need her, not to hesitate to ring her

Friday, 25 April 2008

New Direction

Unknown to me, they only take people on if they have been referred, by GP or psychiatrist. So I have a form to take to my counsellor on Tuesday for her to complete. Easy as that.

Today I filled in an assessment form, explaining my problems and my interests. Explained what I hope to gain out of the sessions.

Within about half an hour of being there, the place was really busy, people coming and going, I must have said hello to 30 different people during my 2 and half hours there. Lots of people with lots of different problems.

It is possible to have lunch there, and next time I am there - next Friday, I may just do that. It cost £2.50, for a proper cooked dinner.

But they all seemed a friendly lot and made me feel very welcome

A Visitor

I was expecting the lady from M.I.N.D at 6pm, by 6.40 she still hadnt shown up, so I put tea on.
She knocked the door at 6.50, saying it took her 20 minutes to walk, from the office

Anyway, she was very softly spoken, and came across as very caring. Then she found out DH was involved with the local radio she soon realised that the radio station could help promote some events they had on.

The outcome of the meeting last night, means that I am going to the centre today. I will get dumped off the school bus out side, and then when I have had enough, someone will either walk me upto DH, or DH will come and get me.
Downside is, I feel like a thicko, or a nutter

These are the current activities on at the centre, I have marked the ones in red, that I may be interested in. Those in blue, I'm not sure what they are!

Monday: Yoga, Daffodil Group, Introduction to Counselling
Tuesday: Bingo, Reading Group, Beauty Therapy, Hearing Voices
Wednesday: SDS Group, Basic IT, Womans Group, Recovery Group, Board Games
Thursday: Hairdressing, Relaxation
Friday: Walking Group, Craft Classes
Saturday: Pool, Art, Film Evening, Recovery Group
Sunday: Music Therapy

I guess it will all depend on how I get on today, if it means meeting new people, and having fun whilst doing that - thats gotta be a positive move. The first port of call, is for me to gain some confidence

Wednesday, 23 April 2008


I didn't have a very good nights sleep, was tossing and turning all night - yet again! I have woken up really agitated, and not really feeling myself.
I have a headache (lack of sleep), heartburn (which I have just taken Omeprazole for) and really not in the mood for going to work again today.
Wednesday mornings, are a different driver, who I don't feel very comfortable with.

Lady from M.I.N.D. called me last night. She is going to come to my house on Thursday evening, and meet me. She will then discuss, in ways she feels they may be able to help me. I am quite prepared to try, but I am so scared. I am now wondering whether I have done the right thing ringing them.

I also recieved the sad news that my Auntie passed away yesterday, she had been suffering with lung cancer for long time. Rest in Peace AJ xxx


Tuesday, 22 April 2008

Back to work today

I returned to work this morning, after my 6 week break. Wasnt really looking forward to going, but I did and got through it. I am a school transport escort, helping disabled children to and from school, via a school bus. We have 5 children on board, two of which are in wheelchairs.

Went for a coffee with a friend this morning, decided its time I got out a bit - even if its not alone.

I contacted M.I.N.D. last night via email


It was recommended to me by the counsellor at my local hospital, that it may be worth me contacting you.
I am 43, and just recently getting over having a cancer for the third time, I am almost back to feeling physically well.

BUT I have suffered for years with a social phobia. I am unable to go out on my own - anywhere!
My husband is really supportive, and helps me incredibly, but I do feel that I have to try and do something about it myself.
I have completely isolated myself from my friends.

My GP, started me on Prozac on 8th April, which I know is still early days.
I also went for my first assessment, with a lady from the Mental Health Team last week.

I understand you have a local office, with a drop-in centre.
If you feel this may be of some use to me, could you send me details of address, dates, times, and what help you may be able to offer me.

Anyway the outcome was, they emailed me back. Someone is going to ring me about 5.30pm, later today.

Saturday, 19 April 2008

19 Now

I was able to get 19 sticks into my mouth this morning. That is the most so far. My cheek tissue feels quite alot fatter on the operated side than the other, but is not really sore at all now. Jaw is still stiff, with the muscle being quite tight.

Prozac are now being taken in the morning, they are making me feel a little sick, which I hope will wear off soon.

Not really done anything to put myself in any anxious positions. Its so easy 'not to bother'.

Thursday, 17 April 2008

A Few hours at the Seaside

A friend of mine and me went out for a ride in her car. We went down to the local beach, had a wander around the shops and then went and had a lovely lunch in a local cafe. After filling our faces, we went down and sat on the beach. It was a bit windy, so we sat close to the wall, but the sun was quite warm.

It was lovely just to get out from these four walls.

Tuesday, 15 April 2008


Went to see Elaine today (my therapist - as she likes to be called) for my assessment DH bless him, came with me and sat in with the consultation.

She wants me to put myself into positions that cause me anxiety or stress, and to keep a diary of the situation, my feelings and rate it out of 10. She will then have a better idea of what things cause me to panic.

She did remember me from last time, but I did point out, that I felt it didnt help much but I really do want to sort it out.

I explained how I have isolated myself from my friends, how I am unable to go out on my own, and how I avoid situations. Avoidance is probably made things 10 times worse.

I am seeing her in a fortnight.

Monday, 14 April 2008

So tired

I had a period of a few hours, that I felt quite calm and relaxed last night, it actually stood out, as I guess its a bit of a rarity at the moment.

Damn shame I couldnt switch off, by the time I went to bed and was wide awake at 3.10am this morning. Eventually, surely I will just be so tired I will have to have a full nights sleep.

Mouths very stiff at the moment, can only get 15 sticks in, and even that is getting hard. Seems to be seizing up a bit.
I do find it easier after a warm drink, also the end of the day is the time I can get more in. I suppose its down to more movement during the day.
Still using the Diffram mouthwash 3 times a day, which does have a slight numbing sensation.

Friday, 11 April 2008

Mental Health Team

I've had a letter come through for an half hour assessment appointment on Tuesday with the Mental Health Team.
The letter comes from the same woman I saw before .... so I dont give up much hope

Been having the most crap nights sleep, I seem to be waking up every hour or so, I am tossing and turning all bloody night.

Managed 17 sticks in my mouth last night, but only 15 again this morning

Thursday, 10 April 2008

Prepayment Prescription

I have always owned a prepayment prescription card. Due to everyday medication I am on, it works out quite a lot cheaper.

My last one expired end of February, and with all the going ons over the past couple of months, it to expired, there was about a 10 day gap before my renewal card arrived

During that time I was given prescriptions, DH got till receipts with the aim of claiming back the cost.

When I contacted the prescription people they said we needed a FP57 receipt from the pharmacy. I contacted the chemist, but they were unable to backdate one.

So a letter was written and the till receipts sent off the prescription people, explaining my illness etc.

Today a cheque from them arrived for the full amount we had paid for the medication.

There is some justice in the world.

Wednesday, 9 April 2008

Prozac in my possession

I took my first Prozac last night. I know they take a couple of weeks to get your system.

I have a cold at the moment, stuffed up head, snotty nose and really dry throat. Hopefully it wont hang around too long.

I managed to get 15 sticks in my mouth last night, and the same again this morning. But I have got a torch and looked in the mirror. It looks like I have split the 'skin' at the back of my mouth, probably through over stretching it. Its not really sore, just a little tender. Perhaps I wont push to get any more in for a few days.

Still not heard about this antiphospholipid syndrome blood test I had done, nor about my next hospital appointment.

Monday, 7 April 2008


Well not heard back from Gp yet, who was gonna decide after receiving my form, which ones to prescribe. Perhaps once on them, I will sleep better. I am currently going off to sleep quite quickly but I wake up about 4am, and am just led there wide awake.

DH has gone back to work full time. The twins are home as they are now on 2 weeks holiday from college. Not seen either one of them yet - so its nice and quiet for the moment.

Palliative Care nurse is popping in later, with a macmillan grant form. She says we should just try and claim back my lost wages. So she is gonna put in for a £200 heating grant, I'm not gonna complain.

Not heard a thing yet from the prescription people, not even an acknowledgment of getting my letter.

Oh and all weekend I was getting 12 sticks in my mouth plus one, last night just before bed, I managed 12 plus 3. Back to 12 + 1 this morning though

Friday, 4 April 2008

Fairweather Friends

I have been quite hurt over the past few days, by a couple of people suddenly coming back out the woodwork.

I hadn't seen or heard from them in my 'hour of need'. As soon as they heard I was unwell, they disappeared, out of my circle of friends.

Was I really that unapproachable whilst having a 'cancer banner' hanging over my head! Why do people just run away - cancer isn't contagious. How would they feel if it was them in my position - damn hurt too I imagine.

On the other hand, I have had lots of cards, flowers, get well wishes and messages from people I see as true friends ...... even if they do live the other side of the country, and for that I THANK YOU xxx

Gp Visit

DH came with me to see my Gp, she commented on how she hardly ever sees me. Which in itself made me feel better, cos I am sure they see me as a hypochondriac.

She is gonna refer me to the psychiatric team - watch out .... nutter on the loose!!

She asked me to bring a form home to fill in (PHQ9) to which I got 25 points on. Anything above 10 she will consider putting me on anti-depressants have to return it to the surgery at the start of next week.

I told her I didnt mind going on them, if she thought they would help. I have been on Citalopram before, but had to keep upping the dose. Ended up on 40mg. Prozac seemed to work better for me. Only downside is I have a lack of sexual interest, when on them ..... which really irritates me.

Cock up with my repeat emergency prescription for mouthwash, which the Palliative Care Nurse ordered from me on Tuesday. No prescription anywhere, thankfully they did go and get one sorted for us while we waited.

Wednesday, 2 April 2008


Trismus can have a significant impact on a patient’s quality of life by affecting their ability to eat, swallow and speak, whilst compromising oral hygiene, which can lead to further complications.

There are several ways to help. Some people are given a contraption called a Therabite. My surgeon had a very low-tech but effective method. He gave me a box of tongue depression spatulas. The idea is to stack them up and get as many between your teeth as you can. Each day slide and extra one between the existing ones whilst they are in your mouth.

I've been told to do this three times a day, for a minute or two. It will be uncomfortable, but it apparently works well and quite quickly. Today I could only get 11 in, by the time he sees me in a months time, he wants me to get 15 or even 20 in.

Anyway, good news, All tumor has gone, no signs of it at all in what they took 3 weeks ago. Healing well, and doing ok. He was a bit alarmed that I was prescribed morphine by my GP, and quietly had a moan that I should have rung him, - but I did what I had to do at the time. I am no longer on the pain killers now, just the Diffram Oral Rinse.

Tuesday, 1 April 2008

Another Step Closer

Chrissy came today. We spoke briefly, on how I was feeling emotionally and physically. She will ring me Thursday to see how my hospital appointment went. She has made me an appointment to see my GP for Friday morning, regarding the 'going out issue'. She was prepared to come with me, but luckily DH is on holiday and will come instead. I have been told to be completely honest with my GP and not to hide how I am feeling about it, and what problems it causes me.

I have started to write down my list of questions to ask the consultant tomorrow.

1) Will my mouth ever open wider than it does now?
2) Will I need further treatment?
2a) If yes, what treatment and how long will this last
3) What is the likelihood of recurrence?
4) How much follow up will I have?

Chrissy has only ever had 3 dealings with other patients who have been down the same road as me. Two of which remained clear, one who had recurrences.

Not looking forward to tomorrow - but at least DH will be by my side

Monday, 31 March 2008

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

Friday, 28 March 2008


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.

Wednesday, 26 March 2008

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

Tuesday, 25 March 2008

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.

Sunday, 23 March 2008

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

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!

Friday, 21 March 2008

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

Thursday, 20 March 2008


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

Wednesday, 19 March 2008

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.


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.

Tuesday, 18 March 2008

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.

Monday, 17 March 2008

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


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

Sunday, 16 March 2008

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

Saturday, 15 March 2008


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. . . .

Friday, 14 March 2008

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, 13 March 2008


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

Wednesday, 12 March 2008

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

Tuesday, 11 March 2008

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.

Monday, 10 March 2008

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?