Can't think of a Title for this Post!

Have tried to write an entry, so many times recently, and wondered if anyone still followed me. As you will be aware from recent posts, my health hasn't been good for a long time. I still attend clinic on a regular basis for the Pemphigoid, but recently they were concerned over a raised lump on my neck. No one would know it was there, and it didn't hurt. In April 2010, I underwent an ultrasound examination, and at that time, a tooth needed to come out, and it was thought it was maybe the infection  from that. I continued with monthly clinic appointments, and if you remember I had cancer in situ in the vocal cords,which then progressed to the Uvula, and have been in hospital 4 times now, over the last 12 months, having had laser treatment to remove the cells, and a small lump in the throat removed, which was benign. My voice became almost non existent, but recently came back to almost normality. We really thought, I was 'on the mend'.However, the usual Consultant I see every few weeks, became concerned that the 'lump' on my neck was still there, and ordered an Ultrasound again. I had the Ultrasound, and was told by the Radiologist, that it had grown in size, and they needed to do a Core Biopsy, which they did. The lady Consultant rang me at home the following morning, saying she needed to see me again. BUT, we are going on holiday in the morning 27th, so it was arranged to see her on the 7th June. I then received a letter asking me to contact her Secretary. They needed to see me preferably before I went away! it was decided to go today, and Allan had time off to go with me. I knew something was wrong......and was told I have Metastatic Cancer. The lump appears to be a secondary Tumour, and have had MRI and CT Scans today to determine the problem......My mind is in a whirl, I'm very frightened,  and this post has been so hard to write......I now go back for the results of the scans,and what treatment they intend on 6th June. We booked a Holiday months ago, when I was feeling a little better, and now go to Mid Wales in the morning.


Thanks for taking the time to read, as I begin this Journey, and a new 'chapter' on our return.




    Our cottage for next week, and the view from the Bedroom below. Allan will no doubt be walking those Berwyn Mountains........

                                             


And Pistyll Rhaeadr (UK's highest Waterfall) is just below those mountains.



Aileen...X

Still fighting, and hoping to Win!

Just to thank you for your kind comments and emails.....as you will be aware I was due to go for  the results of the January Biopsies on 22nd February.....the result is that I have to have more Surgery.

The lesion removed from the Soft Palate was Non Malignant, but I have Cancer in situ (Stage 0) on the right vocal cord, a Cyst/Polyp to be removed, and Reinke's Edema (fluid and swelling on the vocal cords). As you can imagine I am very unwell just now....and worried.  
I am going to hospital today for pre op assessment, and due for Laser Surgery on the 16th March, at a later date I am being referred to a Speech Therapist.
Allan was reinstated in his Job on 31st Jan, after a year unemployed, and has settled back to working again....he can't take me today, but a Friend will go with me, and he will collect us, and bring us home.
I'm making this brief, as I have been thown offline 3 times whilst writing this.
Thank you for your continued support...it means a lot.

Just to say I'm Home...and have been for a few days. My latest throat operation.....19th January  was 'different' from the previous two. (June/October.)

I was probably expecting more from this, but not allowed to speak for 24hrs, and almost total voice loss. It was difficult before, but now so hard to accept that my voice hasn't returned to what it was before I went into hospital, and I feel very tired.

 Having been a Telephonist/Receptionist all my working life, the voice was important. Anyhow, the aftercare this time around wasn't as good as I would have liked, unable to speak, and in a little room on my own, left to my own devices for most of the time......I go back to Clinic on the 22nd February.

Anyhow, enough of that.....

My Man went back to work this week, after 12 months unemployed, reinstated at his previous job, as I explained in a previous entry. He had been with the firm 23 years. they outsourced his job, and it didn't work!

He would have liked to have told them NO,or words to that effect, when they asked if he was still available, but he did like his job, and was glad to be working again. It will not be fulltime though, but that really suits us.

Only  a short entry tonight, just to let you know that I'm still around.

'Bye for now

 Aileen....X 

An eventful Day in the life of me

Well, just checking my 'mail' after a very busy Day at the Hospital.....and not much time to think....I suddenly realised this evening the Date 11-1-11. I remember when the year started,I decided I must do something special on that date, I have a thing about dates and times, and do you know it has just passed me by today. Even knowing the date of my appointment , since the middle of December, and I almost missed it, but I'm here now, with what is left of it, and just wanted to post.

Apart from Medical issues, it has been a good week for us (see previous Post)

I'm off to Bed now, but before I go...........

I bought the above Picture about 9 months ago, always loved it, and had a Birthday Card with this on many years ago, there was a series. As soon as I saw it, just had to have it....it wasn't expensive, and in a charity shop., more or less perfect, and has pride of place in my Lounge, and always a talking point. My question is.....does anyone know the Artist. I've scoured the Internet, but not managed to find out.

This was my Tree at Christmas, very pretty with the recent frost, the lights only just showing. Now all gone for another year. I planted this tree around the time my Son died (December 1998), and brought it with me here when I moved 8 yrs ago, and it survived!

All for now

Aileen....X

(The 'block' colour wasn't intentional.....can't get rid of it :>(

A New Year for us, and changes....

Still quite cold, so using the above tag, but hopefully not for long. We had a fall of Snow on Friday, but washed away by pouring rain overnight. I have kept putting off posting, as more health problems for me.....
Wanted to wait until the festivities were over, and trying not to think about it.
Before, I write about my latest diagnosis......I want to shout from the rooftops. Allan has been reinstated in his old job!!
The Company 'outsourced' his position as Purchasing Officer, but got into a bit of a 'mess', At the time he was the only one made redundant, his friends and fellow work colleagues were up in arms. Anyhow, to cut a long story short, the 'other' Company appear to have messed up, and Allan has been asked if he wanted his old position back...did he?. But, at first it may be less hours than before. It has been an awful year, with him losing his job last Christmas, and my health worsened from April.

We have got by,and our love for each other has kept us going,I really needed him with all that was going on in my life 'healthwise', and I've supported him..........my life will change again, as I've got used to him being around more, and being able to just ring, and as he is only a 10 minute drive away, he's there.......
..........and here he is, my Soulmate,(not the best of pictures but appropiate)

This morning he handed me an envelope, jokingly I said it feels like money, and it was, such a surprise, a beautiful 'Thank You' card with a £100 inside...for my support for him over the year. I almost bought a new Camera last week, so now will use the 'gift'

Now, back to me....
I had an appointment Christmas Eve with a new Consultant,new Dept. Wasn't keen on him, everytime I quoted what my regular Consultant had told me and the reason they were referring me to him....he kept saying that is not why you are here. Mainly I was there because of my voice changes, and other problems. I was sent the copy of the letter that they had sent to him! He decided there and then to organise a Laryngoscopy ( I thought he would have a chat, and tell me what they intended) asked me to follow him, after asking the Nurse to set it up. On the corridor, I being nervous, asked if they did some sort of sedation on the throat beforehand (as I had read) He wasn't well pleased, said 'I had better come back into his office' The next minute he shot something up both nostrils, and down my throat, muttering that most people find that worse than the actual examination. there was no discussing it! So off we went again,and he mentioned that he would have a look at my throat.Allan always goes in with me, but we had bumped into someone we knew, and I told him to have a chat, thinking we would be sat for ages as usual, but I was called in, and he hadn't realised, until it was all over...  The camera was put up my nostril and down my throat, not as bad as I first thought....but having bad experiences with swallowing previous cameras. He printed out a colour picture of my throat, do you remember the first instant cameras?He mellowed a little by this time, and showed me that they had found a 'growth' on my Soft Palate, and one on the Vocal cords. they are going to remove the one on the soft palate, and do a biopsy on the vocal cords. I don't know how serious the outcome will be, and I'm really frightened, not managing to get to sleep until around 4.00am on most nights.

I go for a Theatre admissions assessment on the 11th January,and should be able to ask the Nurse on the day a little bit more detail, and they operate on the 19th. It has been pretty quick, was seen 24th Dec and received appointment 31st Dec...this will be in hospital 3 times in 7 months, yes a lovely start to our festivities. BUT.... we would be in a state without them, and things can only get better, or can they?

Thanks for your continued interest, and kind thoughts.

Aileen....X

A New Year

Just came by to wish Friends and Readers a 'Happy New Year'

So glad to see the back of this one, and hope for a better one for everyone.This will go down as one of my worst ever, but know that I am not alone...... 'with problems'

I am going into Hospital again shortly,that will be 3 times in around 7 months,  but will write about that another time.

As 2010 ends, we can only hope for a better and brighter 2011..........

Aileen....X

Hello! to my Blog Friends...an update as promised. I've delayed writing.....and on a good day, try to forget what is happening 'healthwise'


Just to recap......


I have been going to the Oralmaxillofacial Clinic since September 2007, after problems with Ulcers in the Throat and Mouth since January 2006 and 12 nosebleeeds (one lasting 7hrs)also recurring Conjunctivitis. Finally diagnosed with Cicatricial Pemphigoid , basically a 'Compromised Immune System'......for which there isn't a cure. I'd got used to having a sore throat/mouth......but in April 2010, things were changing, and I also have an enlarged lymphnode at the side of my neck. I cannot see this, but they can 'feel' it. As some of you may remember, I went into Hospital in June for Biopsies, and the result of that was 'Cancer in Situ' (stage before Cancer). Arrangements made to be admitted for Laser treatment, first they cancelled, and then you may remember I had a fall in the Garden, so Hospital delayed, and arranged holiday cancelled. Did finally go in Hospital October 12th, and had the Cells Lasered.



Did go to back on 9th November to the Clinic that I attend on a regular basis, used to be every 4 months, but with the 'changes' now go every month. I thought I would receive the results from the Laser treatment, but didn't, and another appointment was made for January. It bothered me that I had to wait all that time, but then got a 'Phone call on the 23rd November, asking if I could attend the next Day? which I did, and saw the Surgeon who had done the Laser treatment.He was happy with the way things had gone. BUT, now was asked how long I'd had the 'problem' with my Voice.....I sound like I've got Laryngitis a lot of the time and have done all the time I've been attending, but sometimes it sounds just normal. I thought they were treating me for all the Mouth/Throat problems,they have just been concentrating on the Mouth/tongue... but I'm now being referred to Ear/Nose/Throat for investigations further down the throat, and I'm really 'worried' is an understatement, totally different Hospital, but they all come under the umbrella of Sheffield Teaching Hospitals, and it is just around the corner. the only (soonest)appointment they can offer me is December 24th, Christmas Eve is my favourite Day of the Holiday. I also have appointments for the main clinic, and another clinic on the 14th December (My Birthday) one in the morning and one in the afternoon.





Still having problems with the Hand/Arm that I fell on, and it appears to have 'upset' the Carpel Tunnel..which is quite common, BUT, very painful. After 3 months of pain my own Doctor has reluctantly given me a Cortisone injection in the wrist. It has improved, but Surgery is maybe on the cards for that. I can't cope with that just now. Some better news, I've just had an Eye test at the Opticians, and no change there, same Prescription for the last two years, but only need them for reading and close work.

Allan is still unemployed, after applying for various positions, as it happens he has been available for me, and a great help. We are both hoping for a better 2011. I wish I could just wake up in the morning, and it was not happening to me.



Today, the 10th December (1998)was the date my Son was killed in a Traffic accident, somone crossed the solid white line coming in the opposite direction. and he was killed outright.
His ashes are buried in Penistone churchyard, which is quite a journey from here, but I always go the nearest Weekend to the Anniversary and lay a holly Wreath. The weather has prevented that, which has upset me, but we will go as soon as we can.

*We made our third batch of mince pies yesterday, Allan doing the preparation, and me filling as best I can .........we ate the first two lots, but I'm expecting a couple of visitors today so hope they last. I love them, and could eat them all year.

Aileen....X