Emerging from a dark place.......

Regular followers will be aware of my Health problems for the last 5 yrs, and attending various Clinics. Having being diagnosed with Pemphigoid (compromised Immune system) in 2007, along with Biopsies, and Laser treatment, in April 2011 was found to have a 'lump' in neck area....was sent for Ultrasound, CT and MRI Scans, and core Biopsy. this was found to be 'secondary' Cancer, and it had progressed from somewhere else, but where?.....into hospital for another 'investigation' and then found at the base of the tongue.

Our life was turned upside down at the end of May when I was diagnosed with Pharyngeal Squamous Cell Carcinoma (Stage3). Was told I wouldn't survive an Operation, and unable to have Chemotherapy because of other health complications, including Diabetes. Radiation was the only thing on offer for me.
We were due to go on Holiday to Wales the next day, and duly went, but our thoughts were very much in the future, and what was going to happen.

My last Blog entry was the night before being admitted to Hospital to have a PEG(percutaneous gastronomy tube) inserted in my Stomach (July), this was for when swallowing would become difficult......little knowing how soon that would be! (don't know how to get rid of the WHITE bits...sorry)
Next followed two 'fittings' for a head 'Shield' to be used throughout..... I thought this was for protection, BUT, it's so that they can bolt to the Radiation table, as treatment is given. It probably sounds horrendous,but you get used to it, and going every weekday from August 5th-September 23rd. There is usually at least three Radiographers in the room with you, and they are mostly very kind, and you get to know some of them more than others. It's a constant round of Dr, Dieticians,Speech therapist etc...you get a bit weary of it all, as you progress through treatment, but it is neccessary, and they really look after you.
I was determined to 'eat' normally, but couldn't even swallow Water within a few treatments. I have lost almost 3 stones in weight, and the Consultant said the 'feeding tube' is my best friend just now.
The actual Radiotherapy isn't painful, it's what comes after, the skin breaking down etc. was told it would get worse at the end of treatment, and it did!

Allan said I looked like I'd been attacked by a Shark.....(if you can see the dark areas, a little of that remains, but mostly healed....that was quite an ordeal......and now it's what is going on inside. I have had Thrush on the tongue for weeks now, and have had 5 lots of antibiotics, also developed Lymphedema in the neck area (fluid not draining). Going to see someone with that on 28th December, at a specialist clinic.It has been one of the hardest things I have ever had to deal with in my life, but with Allan's help and care, we cope.Still unable to eat solid food, but now managing to swallow Water....I have been back to Clinic on the 5th and 20th December, and the District nurses still come to see me. I was told it will be months before I'm really well, and may never get back to 100% me.Allan keeps me going and encourages me, as I've had some down days recently.

We start the New Year 2nd January with 'review' MRI Scan .

Hope it's not too much information, but some people have been really concerned via letter,cards, email etc.

We can only hope for a better year 2012.

This was  made for me.....a long, long time ago by Donna (D's Designs) don't know if she is still around?

Sorry for delay in updating, and thank you for your support!

It's nice to have the support of fellow bloggers, and welcome the new followers.....

After the recent news, things are moving along quite quickly now, but feel there have been previous delays along the way. But, as people keep pointing out to me, Mouth cancer is difficult to diagnose, until it reaches a certain stage, also the Pemphigoid mirrors a lot of the symptoms, and I have had that for over 4years. I did mention in my last Post that I was having a dental checkup, which resulted in some teeth being removed, due to the upcoming Radiology. I was upset over this, but it was deemed necessary. I will not go into all the medical details, but it was explained to me, and if I hadn't agreed, may have become difficult later with infections etc.
Things are moving pretty quickly now, I have had the 'head shield' made, and it takes two visits, which were last Wednesday, and again on Friday. You then go on a simulator, and the precise areas are marked out. Because of the area being treated,the Radiation isn't painful, but it's the effects of it.... I'm having a PEG tube fitted into my stomach, as swallowing will probably become difficult over time, and I'm also Diabetic.
I'm going into Hospital in the morning, so this is a bit rushed....not looking forward to this procedure at all, and I will be awake, but sedated....hopefully, only in for one night.

The Radiology starts on the 8th August, Allan is on holiday from work, for two weeks so that holiday will be taking me daily for treatment. he has two weeks, and usually goes on his own into the mountains for the second week. Would you believe, he was going to Norway, and has just renewed his passport.

We have been given a list of appointments, 35 of them in all finishing on the 23rd September.....

*Other news.....I mentioned earlier that Allan's Mum was having heart surgery (8th July), and thank you so much for your good wishes for her, it didn't happen then, and was actually delayed twice, even went in, and sent home, not enough staff!
BUT, she had surgery last Tuesday (19th), and is doing reasonably well.

Must get off to Bed now, as early start in the morning....

Thank you for taking the time to read and comment.....I'll update when I can.....

Aileen...X

Trying to cope with the latest news, an update as promised.


Did have the biopsies on the 28th......overnight stay. It was my 5th in 12 months. Was told, that the ENT People were in the theatre next door to where I was having Surgery, so both were going to 'take a look'. The Consultants came round next day, and was informed they had found a 'thickening' at the base of the tongue. A specialist Nurse came to see me also, she gave me her card with 'phone number, and her email address.
Was discharged on the 29th, but within 15 mins of getting home, this Nurse phoned, and said they were trying to get the results of the Biopsies by Monday 4th July, and to be at the Clinic, unless I heard from them.


I was called in to the Clinic, and was met with several Consultants, who shook my hand , and introduced themselves. Was asked question after question, about the Pemphigoid, which I have had for over 5yrs. then this Consultant started talking in depth, stating he was fron Weston Park....which is the Sheffield Cancer Hospital.


He didn't beat about the bush, stating that I had Cancer which was inoperable, they would have to remove the Tongue,Voicebox etc., and I wouldn't survive the Operation. (Sorry if it's too much information) I'm unable to have Chemotherapy, because of the condition I already have (Immune System).I asked 'how long'...if i didn't have the suggested treatment, was told a matter of months, and I would become so very unwell, with glands swelling etc...... I'm to have 7 weeks of Radiotherapy, 5 days a week, with weekends free. I will become very unwell, unable to eat etc. so I am having a PEG fitted in my stomach, and a 'Mask' will be made for my Radiation treatment.I will visit each day, unless I become too unwell to be at Home.This is a bit rushed, as I have to be at the Dental Hospital this afternoon, for teeth to be checked out,before Radiation can start. It all should be taking place within the next 2/3 weeks. I am frightened because the side effects of Radiation, soreness,sickness, and eventual PAIN. I am uncomfortable everyday to some degree, so don't know how I will cope, but so many have before me, and will after me.

We are in shock just now, so this is just a brief update, to anyone who still follows my Blog.

Along with all this Allan's Mum is in Hospital, having a triple Heart Bypass on 8th July.....a lot for him to cope with just now.
Allan will probably 'move in' with me for a while, as the treatment starts.....
Thanks for taking the time to read, and will update soon...



Aileen.....X

More Surgery

I promised myself, and others.....that I would update, and stay in touch. We did go on Holiday, and it was lovely and peaceful, and very relaxing.I intended to share photos, but my PC had other ideas, and many tmes couldn't get online But, now back to the real world, and pending Biopsies, tomorrow to be exact (28th).
We arrived back on the 3rd June, and had to be in Clinic on the 6th. After a long wait to be seen, the news was mostly negative, for me that is....the neck tumour is a secondary tumour, with an unknown primary. In other words, they can't find it.If they can't find it....they can't treat it. Cancer has 4 stages, as many other sufferers will be aware. I've read that it has to be stage 2 to become metastatic.Rightly or wrongly, I have joined the Macmillan site, and sometimes it's very frightening

A very tense time for us....and tomorrow will be my 5th Biopsy, in just over twelve months. The Consultant is going to do a Panendoscopy, and take biopsies in the mouth and throat area. Having hardly any speaking voice for most of the last year, it came back to almost 100% the day before Allan's Birthday (Friday 13th) We thought it was a good sign, BUT, it hasn't been the case.

Will end here, and hopefully back with some 'better' news soon.
Thanks to anyone who has been in touch recently.......

Aileen.....X

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