Merry Christmas to all

Make a Smilebox greeting

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.

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

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 ....

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

Please Help

Can I ask a huge favour

http://www.thepetitionsite.com/1/save-quaywest-107410081024-fm
Please sign the above petition, to attempt to save something very dear to our hearts
Sue & Dave x

Prozac

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?

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!

Sponsor Money goes up!

Doing brilliantly so far with the sponsorship.

Have currently over £300 sponsorship, which £130 has been made online
www.justgiving.com/susanenglefield

Would be fantastic if we could top £500!

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

On Page 18

Fame at last !

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!

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

http://www.justgiving.com/susanenglefield

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.

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

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.

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!

My Beautiful Grandsons

New Grandson - James, born 14.06.08

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

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!

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!

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.

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.

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!

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

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.

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.

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

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

Agitated

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

F*****G CANCER HAS A LOT TO ANSWER TO!

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

Hello,

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.

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'.

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.

Therapist

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.

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.

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

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.

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

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

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.

Trismus

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.

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

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.

Macmillian letter

Sent this to Macmillan Helpline today: Not sure why, but I really need someone to talk to about it.

Hello,
Not really sure why I am typing this ... as I am still in a bit of a daze really.
I am a 42 year old mother of four.
I was diagnosed when 16 with Hodgkins Disease. I was treated with surgery and radiotherapy from lower jaw - waist. I was discharged from the oncologist in 2006.
In 2005 I was diagnosed with DCIS of my left breast and a double mastectomy was performed, also then being discharged from the Breast Cancer Clinic in 2006.

2007 was hospital free year for me.

BUT on Tuesday, I was diagnosed with Mucoepidermoid Carcinoma of the Saliva Gland.

I am due for a WLE on 10th March. Obviously the results of this will depend on what happens next.

I am totally shocked, I wasnt expecting to be told that the lump that was removed was cancerous, as on first impressions it was a polyp. I went into see the consultant on my own, and really and truly was not in a state of mind to ask questions.

I dont seem to have been able to find info on the internet about it, and could really do with having someone to talk to, about my concerns.

I'm not sure, you would have anyone either locally, or who could talk to me via the telephone.

My contact details are ********

Bad Breath

DH and I haven't had time to sit and talk, the only time we seem to get is the 20 minutes in bed before we get up.

As usual he holds me so tight, but I have been pushing him away.

How can he kiss me - with this in my mouth - I cant stand it. My breath is disgusting, and I have been scrubbing my teeth and tongue so many times each day - but it doesn't help.

Phoning Round

I have now phoned and spoke to those I felt needed to hear it from me.

I feel really sorry for my dad, he has all day just to mull it over, with no one to talk to ... I have tried to make light of it to him. I tried to explain about the problems with the radiation if needed, he doesn't quite understand.

Apart from the the couple of hours sat down here before dawn today, I haven't spent a moment on my own. I guess that's when its gonna hit home properly. I am still in dis-belief really, and even though my admission letter arrived today, and I have read all the leaflets about hospital services etc, its still not really happening to me.

DH opened the wine tonight and I have already downed two large glasses.

Bloods taken

My Gp managed to get all the blood they needed in one go - thankfully.

Which meant I didn't have to go over to Taunton to the hospital again today.

I asked him about radiation. Normally (according to the little info there is on the internet) this type of cancer is treated with Surgery plus radiation. I was 'saturated' with radiation in 1981 from lower jaw - waist back and front. I have always been told that I could not have any more radiation in that area again.
So I asked GP, if he thought my cheek would still be allowed to be zapped. He was totally honest with me and said that he had never known anyone with this before. But he would assume that my cheek would be allowed to be treated. It will depend obviously on spread and if it goes down into my jaw area. Also will depend how much after the final operation how much face I still have left - to put it bluntly.

Not sure about hospital stay, will all depend on how quickly I am able to get fluids down. I will be on a drip in the meantime.

I was told to anticipate 3-4 days I know its very small in comparison to having my mastectomies, but I am more scared!

Shocked

Been laid awake since about 2.40am, just had to get up and make a coffee.

I have that sick feeling in my stomach. I've already had the 'perhaps I will see if I can loose some weight in the 12 days before my admission' thought- might help with the anaesthetic etc.

Then I think fuck it, why starve myself now when I wont be able to eat for a properly for a good week after surgery. So I am currently ramming custard creams down my throat, whilst trying to stop choking through the tears that have suddenly come on, whilst I sit here solo.

I never did feel like a proper breast cancer patient. Being lucky enough to avoid chemo. Didn't mean I wanted to be a fully fledged cancer patient though.

Yesterday was a blur. I had plenty of phone calls from family and friends, but it seemed like I was talking about someone else.

I dont believe it

DH's work colleague came with me to the hospital. I'm so glad that she came with me now.

Went in about 45 mins late, and saw another doctor, who introduced himself, as Mr Graham Merrick who would be taking over my care. So straight away, I knew it wasn't finished with.
I've looked him up on the internet, and he seems very qualified, along with plastic surgery too.

I have Mucoepidermoid Carcinoma of the salivary gland

Mr Merrick explained that the tumour which was removed measured about 1cm in diameter, but felt that a larger area needed to be removed and examined.

I asked him if he felt it was connected with my Breast Cancer, to which he said no. But he couldn't rule out any connection with my Hodgkins Disease.

He went through the plans to remove a 50p size area of tissue, and to use other parts of my inner mouth to fill the hole.

Once that is examined, he will then make a decision what happens next. I have been allocated a MaxilloFacial Cancer Nurse - Jo somebody - she will be ring me over the next few days.

I then had to go to Pre-op Assessment and have a ECG, weight etc. Their attempt at taking bloods (8 bottles, 23 mls needed) were unsuccessful. I was told to go to my GP this afternoon to get him to do that.

Home to DH, who looks terrible, completely white washed!

Then down to my GP for bloods, he said it was too late in the day, and will do it tomorrow morning. Asked about my constant headache, which he feels is tension.

Feeling very numb, not had a cry as yet, just completely gob smacked to be honest!

Not feeling too bad today

Well the bruising and swelling seems to have gone. The stitches are holding on tight. I so wish they would just break off.

Just gotta wait for my letter now, saying everything is ok

Ouch

My mouth is very swollen and sore.

The stitch threads seem very long, and keep sticking to the back of my throat.

I am not going to work today, as I feel crap. My head hurts and I can hardly open my jaw.

I have attempted to rinse my mouth out with warm salted water, but it is so sore.

Talking is difficult, and I feel quite low today

Surgery Today

I arrived at the hospital, about 15 minutes before my appointment time. DH came with me and we sat watching people come and go.

I was then called in by a nurse. Who issued me with Antibiotics. I had four to take, and was told to go for a coffee, as they had to have an hour to get into my system, before the operation started.

It was a very long cup of coffee.

We went back and eventually I was called in. They went through all my medical notes, and then came the anaesthetic. I was soon very numb.

I had a lovely pair of eye protectors on, and green sheets were spread across my body.

I shut my eyes and let them get on with it. I am not very good with things in my mouth, I tend to gag, and was very conscious of the possibility of throwing up.

The lump was removed, and put into a little bottle. According to the surgeon, it was a complete ball with fluid inside. Didn't look like anything sinister, just a polyp.

He put in six dissolvable stitches, and I was on my way.

I was told results would be back by the end of Feb

Phonecall regarding Thursday

Today I had a phone call from the hospital, asking me to attend the MaxilloFacial Outpatients Department on Thursday at 3pm.

MaxilloFacial Appointment

Today I met Mr Hamblin.

He examined my mouth, and felt that the lump was probably scar tissue. He gave me no cause for concern.
So an appointment would be sent to me, with plans for removal of lump (for diagnosis) under local anaesthetic.

Letter arrived with 1st appointment

A letter arrived today, inviting me to an appointment with a MaxilloFacial consultant, at the local village hospital.

I have to go on Wednesday at 10.30

Visit to the Dentist

Today I went to the dentist for a filling.

I decided to mention about a lump I have had inside my cheek. It was not painful at all, and to be honest I can not tell you when it first appeared, at least 6 - 8 months previous.
As I say it wasn't uncomfortable, just annoying, as I kept playing with it with my tongue.

It was as far back as I could go with my tongue on my right hand side cheek. It was a solid mass, that to me appeared like a mouth ulcer or pimple.

Although my Finnish dentist, had no idea what it was. It was only when I mentioned that I had had cancer twice before, that I he said he would refer me to see someone at the hospital.

A New Year

I am a 42 year old mother of four.

I was diagnosed when 16 with Hodgkins Disease. I was treated with surgery (spleen removed) and mantle radiotherapy from lower jaw - waist. I was discharged from the oncologist in 2006.

In 2005 I was diagnosed with DCIS of my left breast and a double mastectomy was performed, also then being discharged from the Breast Cancer Clinic in 2006.

2007 was hospital free year for me.