Waving not Drowning

Hello! any Friends out there......and a big 'Thank You' to anyone who has sent Greetings for Christmas.....



I have meant to 'update' for so long, but as time goes on, it's harder to catch up, as such a lot has happened, and sorry for the year of absence

Still dealing with Oropharyngeal Cancer, and have had another MRI Scan on the 7th December. Did have two previous ones, and the diagnosis was 'It hadn't progressed. However, still getting a lot of the same symptoms, so I'm waiting for result from MRI, and go to Oral Maxillofacial clinic on 7th January.......the waiting is the worst part, but feel if there was any problem, I would be recalled earlier.

I had the PEG Tube (feeding) removed after 10 months, and can swallow normally. However, the Saliva Glands/Tastebuds have never recovered, but we remain hopeful. Most things have little or no taste, eating out is impossible for now. In fact didn't have a cup of Coffee for 5 months.....
Stilll trying to maintain my weight, as I did lose 4 stones at the time, always wanted to lose a little, but prefer my former self. Never thought I would be faced with the problem of trying to gain weight. Very unstable with balance, and further problems arose in September, when I fell at the back of the House, and broke a bone in my foot, didn't got to A & E until 4 days later, escaped without a Cast!, but hurt both wrists, and knees.
So that has hindered my life somewhat......apart from that, hadn't been out by myself since June 2011. Allan has supported me through the 18 months, never thought my life would come to this, but I have so many things to be grateful for.

On a lighter note.....it was Allan's Parents 'Diamond Wedding' Anniversary on 26th December. I tried for some months to arrange for a special 'Greeting' fom the Queen (when a couple have been married for 60yrs) and it happened on the 22nd with it being Christmas. They were thrilled of course! I even got a Note from Buckingham Palace to say when ,and how it would happen.



'Bye for now......

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.