A Diary Of My Laryngeal Carcinoma (Cancer of the Larynx)

The daffodil has always been my favourite flower and it has now become even more important to me. One of the first flowers of spring, the daffodil is a symbol of hope. This flower represents the hope of a world free from cancer. Created by the Canadian Cancer Society in the early 1980s, Daffodil Day is now run by cancer charities in seven western countries. The event has given the daffodil international significance as an accepted and positive symbol for the heroic efforts made by cancer patients.

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The following is my account, in the style of a diary, of when I found out I had cancer of the larynx and the events before and after and if by reading this it helps anyone that is great…

September 2004.

This is when it all started. At first I thought it was hay fever as my voice was just a little hoarse. I ignored it thinking that it would go in time. Some days it wasn’t too bad and those were the days I thought it was going away and then other days I had difficulty in talking; it was a real effort at times.

December 2004.

By the time December got here and I still had the hoarseness. I thought it was time to go visit my doctor. The first doctor I saw thought I had a throat infection. I didn’t like to say anything to correct her as I assumed she knew what she was talking about but I thought it strange that I’d had this since September and I’d never had a fever, sore throat or felt ill - which I would have if it had been an infection.

She gave me a course of penicillin but I felt certain it wasn’t what she said so I didn’t take them. I left it another week and then made an appointment to see another doctor. As soon as I explained my situation (and she asked more questions than the last doctor) she immediately said she’d make me an appointment to see the ENT (ear, nose and throat) specialist at the local hospital. She also assured me she didn’t think it was anything to worry about because I don’t smoke and neither does my immediate family.

19th December 2004.

Two weeks later (a week before Christmas) I went to see Mr England. After asking me the same sort of questions as my GP, he then got a small mirror (the sort dentists use) and put it down my throat to take a look at my vocal chords. This is called an indirect laryngoscopy and wasn’t as bad as I expected it to be although as he took it out he caught the back of my throat and made me gag a little but after a couple of swallows of water I was fine again. He said he could see some lesions on the right vocal chord and that he’d like to take a biopsy on them by doing a microlaryngoscopy. He said this is a procedure where the vocal folds are looked at in great detail with magnification. The magnification may be with a microscope, endoscope or by video enlargement - in my case it was going to be the endoscope. He also said that from what he’d seen he didn’t think it was anything to worry about as he also commented about me not smoking so he thought is was something like nodules which are quite common and can be easily removed. Before I left he made the appointment for the biopsy which was for the 25th February 2005. As I walked out the door he said something that I’ll always remember and that was “Go home, relax, and have a good Christmas.”

Friday 25th February 2005.

Biopsy day! This was a day that I wasn’t looking forward to. I had to be at the hospital by 7.30am. At the initial consultation with Mr England I was told I’d be going home the same day but this almost didn’t happen! I was shown to my room where a nurse took a few details (address, date of birth etc.), then the anaesthetist came to see me. He also asked a few questions (like was I allergic to anything) and also told me what to expect before I actually went into the operating theatre, explaining he’d be putting an oxygen mask on me before I went to sleep and putting a needle into the back of my hand ready for him to inject the anaesthetic. After he left, one of Mr England’s registrars came to explain what the biopsy/operation would involve. The more he told me, the more nervous I felt. The first thing he told me was that I wasn’t allowed to talk for about 7 days afterwards and that I had to carry a pen and paper around with me. He then warned me about chipped teeth because as the laryngoscope is inserted it puts pressure on the upper jaw and a certain amount of pressure is put on your upper teeth. When I told him I had a top denture he was really pleased as he said that helps a lot and the most I could expect would be a sore gum - which turned out to be right but it only lasted a few days and didn’t cause that much discomfort. The other thing he warned me about was a numb tongue because it gets pinched between the laryngoscope and the lower jaw and often gets pushed more toward one side. I was lucky as I didn’t suffer from any problems with my tongue. He also warned there could be a certain amount of bleeding that could become troublesome and if I had problems I had to contact the hospital right away but all I had was the taste of blood in my mouth for a few days after. The last thing he told me (I think he left the best till last – LOL!) was that sometimes during one of these operations the throat can swell and that I might need a tracheotomy! For anyone who doesn’t know what one of these is, this is a procedure where the surgeon makes a hole in the air passage to allow the patient to breathe. A tube is then passed through the hole, down the throat and into the main airway at the top of the lungs. I asked if that did happen how long would I be in hospital and he casually said about 2 weeks! And here was I thinking I’d be going home the same day – ! I didn’t need this as other then having the hoarseness, I felt fine. Now he was telling me that I might be worse after a supposing simple biopsy, second thoughts were creeping in. Everyone was convinced that it wasn’t anything serious so why put myself through it as I can live with a husky voice? So I asked if this operation was really necessary. He said it’s best to make sure that there wasn’t anything sinister going on and that what he’d told me only happened in rare circumstances. He left the room and I was then on my own for about an hour before I was taken down to the theatre at 9.30am. What a long hour it was with all sorts of thoughts going through my head.

Being wheeled down to theatre wasn’t as nerve racking as I thought it was going to be. I thought I would have been about to jump off the trolley and head for the big outside but I was quite calm considering. The nurse that stayed with me up to me actually going in to have the operation thought she’d better warn me that as I came round I could be coughing and spluttering, although she did add that not everyone experienced that. I, fortunately, was one of those. As I came round I remember not feeling any pain or soreness in my throat, which was the first thing I thought I would feel. The nurse was there and she was chatting away to me and I even managed to whisper replies. After I’d come around enough I was wheeled back to my room at 10.30am. I know the exact time because as we went out of the recovery room there was a big clock above the door. When I got back to my room I was actually allowed to drink some water which surprised me. Another thing that surprised me even more was that when lunchtime arrived, I was starving. I hadn’t had anything to eat since 5pm the night before so I asked the nurse if I was allowed anything to eat and she said if I felt comfortable swallowing then there was nothing to stop me as long as it was something soft. I managed to have some mashed potatoes and gravy followed by ice cream.

When I first came back from the operation I was told the doctor would be round later to see how I was and to say when I could go home. As the time crept nearer and nearer to late afternoon it began to bother me that he hadn’t been and I was worried that I’d be staying the night in hospital. I asked one of the nurses about this and told her that I’d been told I would be going home the same day and that the doctor hadn’t been yet. She told me that they were waiting for me to be sent for an urgent CT scan!!! And that if I didn’t have it that day I’d be staying the night to save me coming back the following day. What?! This was news to me! I asked her why I having one of these scans as it hadn’t been mentioned before. Of course, my mind was working overtime by then and that maybe they’d found something more than what Mr England had first said he’d seen. All she said was that she didn’t know why and all she knew was that it was written on my records for me to have the scan.

Time went on and it got to teatime so I had potato and gravy again with semolina pudding to follow. All through the afternoon I’d been drinking water like it was going out of fashion – !

I thought that no doctor would come now so I asked a nurse if I could call my family to let them know I’d be staying in. About ten minutes after I’d made the call, Mr England (not one of his registrars that I was expecting but the consultant himself) walked into my room. After asking how I was feeling, I then asked him what the CT scan was for, saying that no one had mentioned it before and had he found something more during the operation than what he’d seen at the initial consult. He said no, he hadn’t and told me it was just routine after an operation like that. He said that while I was there at the hospital they’d get it over with but that as it was getting late he didn’t think it would be that day after all. So I asked if I could go home and he said something really strange but with hindsight and after thought it wasn’t strange at all. He asked if I’d ever suffered from a serious illness before - why did he say that if he thought what I had wasn’t serious? I said no, so he said you should be okay to go home then and we’ll send for you to have the CT scan. About half an hour later I was on my way home.

During the week after the biopsy I didn’t eat or sleep well and there were times that I felt really down. I think waiting for the results of the biopsy was playing on my mind, plus waiting to have the CT scan which was arranged for the 9th March 2005.

Sunday 6th March.

I don’t know if I’d been trying to talk more than what I should but during the afternoon my neck felt like it had a tie fastened round it, that was a bit tighter than normal. Looking in the mirror, it appeared swollen and when touched was spongy. What worried me was that it would swell on the inside so I was unable to breathe. I waited a few hours to see if it improved but it didn’t so I called the emergency doctor and arranged to meet him at the out of hours surgery. He looked at the puffiness and said he thought it was just the natural healing process and that he didn’t think it was anything to worry about as I didn’t have a sore throat or was in any pain.

Wednesday 9th March 2005

The day of my CT scan. I wasn’t due at the hospital until 2.40pm so I had most of the day to worry about it. I’d also been sent some steroid tablets through the post - four to take before the scan and two after. This was because I suffer from mild hay fever and I was having a contrast dye injected just before the scan. This is so that the part they wanted to examine could be seen more clearly. They wouldn’t let me have the scan unless I took these tablets. They said that if anything went wrong then they would be at fault. I got there in plenty of time but there was a delay because they were running late so I didn’t go in until 3.10pm. With arriving early and having to wait longer I was getting really nervous so when I eventually did go in I was a bag of nerves.

The nurse asked me to lay on the table. With it being my throat they were scanning I was able to stay dressed in my own clothes so that was a bonus. All I had to do was take out my ear rings and take off my glasses. The first thing the nurse had to do was find a vein so that she could inject the contrast dye. First she tried in the crook of my right arm (no joy) so she had a look at my left and she didn’t think she would find one there either so she attempted to insert a needle into a vein in my wrist below the thumb. That didn’t work so she had another look at the crook of my left arm. After a lot of hand clenching on my part, her tapping at the vein she had picked and the tight strap that she’d fastened round my arm, she was eventually able to get the needle in. While she was doing this she noticed that my neck and face was quite flushed. I told her I was hot and coupled together with the nervous tension I was feeling, she agreed. Another nurse came in then and moved me into the machine so that my neck was in the middle of the “doughnut”. I’m not a lover of confined spaces but if I looked up or down at least I could see the ceiling either side of it. The nurse then told me that she was leaving the room but would be back shortly to inject the dye and said that while she was away the machine would move a little and make noises but I wasn’t to worry.

After she had gone I could hear talking but I didn’t know if someone was talking to me as I couldn’t make out what they were saying. The nurse came back and said it was time for the dye. I told her I’d heard voices and if they’d been talking to me I hadn’t heard what they’d said. She said it was the computer talking and it will tell me what to do. I repeated I couldn’t hear what it said so she said that I had to watch for an orange light and when that came on I had to hold my breath and when it went off I could relax and breathe normally. That was easy for her to say! I was worried I would miss the light or that I would breathe in the wrong place. Anyway I did my best but it seemed to last forever and I thought they’d forgotten about me. The nurse came back and said that it was all over but as she took the needle out she noticed the redness of my neck and face. She asked if I was allergic to anything as this was one of the signs that I could be allergic to the dye. I told her that the other nurse had commented on it before the scan so she asked if it had got worse. I, of course, told her I didn’t know as I hadn’t seen what it was like before. She called for the other nurse to come and check it out to see if she thought it had. They even went into the waiting room to ask my husband if he’d noticed how bad it was before the scan but he said he hadn’t even noticed it in the first place. Anyway, the first nurse didn’t think it had changed but just to be safe I had to go sit in the cooler waiting room for 15 minutes. I waited and then they came to check and it had subsided a little so they didn’t think it was from the dye and said I could go home. If only they’d sent me out into the cold air to begin with because as soon as I got outside the redness just disappeared.

Thursday 10th March 2005.

The day after the CT scan I woke up with my cheeks red and it felt like my face had bad sunburn and was very hot. After what the nurses had said yesterday I assumed it was a reaction to the dye and they said if I did get one I had to go see my GP and they would give me something for it. I went and saw the nurse/practitioner and asked her if it was possible not to have medication for it as sometimes the side effects with pills are worse then the illness. She thought it was the dye but a very mild case and said to put a cold compress on it to cool it down and that it should go without taking any pills.

Wednesday 16th March 2005

Result day! When I walked into the consultants office I knew by his face it wasn't good so to help him out I said, "It's not good news, is it?" He said, "Yes and no - no because you have got cancer of the larynx and yes because we have caught it early so it can be treated with a course of radiotherapy - hopefully that will cure it.” In the room with us was another consultant who was then introduced to me as the oncologist, who would be taking over my treatment from that moment on. He went on to explain what I would have to go through. It will be five days a week, with weekends off, for 10 to 15 minutes a day for 20 days. Just one drawback in that and that is there was a 6 to 8 week waiting period.

Saturday 19th March 2005

Since I got to know the results my eating and sleeping improved, although I must admit even though I expected the worst it did come as a shock and I was very depressed but everyone kept telling me that it was a positive sign that it was only being treated with radiotherapy. Plus if the doctors thought it was urgent then they would have got me in for treatment right away instead of having to wait for several weeks.

Monday 21st March 2005

I thought I would go see my GP to get some advice on what to eat (nutrition wise) before I start the treatment. She told me that dark green vegetables are very good at fighting cancer, like broccoli, dark green cabbage, peppers and also fruit like apricots.

Wednesday 6th April 2005

Today I had to go for the making and fitting of the mask that I will be wearing during treatment, (under this entry is a picture of the mask that is like the one I will wear, in the picture it shows an area cut out for the nose mine hasn't got the cut out). Not only is it to keep me still during the session but it’s also supposed to protect healthy tissue. It was a weird experience. All the staff, once again, were fantastic - so friendly and reassuring. In the room was a hard wooden table (no mattress) with a funny shaped plastic thing fastened on it at one end. This turned out to be where I had to put my head. This table, I was told, resembles the treatment table where nothing metal is allowed. I had to take off all jewellery that was above the bust and I was allowed to stay dressed except for my blouse but I did have to slip my arms out of my bra straps so that they were under my arms. Then the nurse covered me with a sheet up to my breasts. The guy that was making the mask went to a machine where he explained that the “plastic” that makes the mask is warmed so that it’s pliable and when moulded over the head and neck it hardens as it cools and gives the shape they are after. When he took it out of the machine the plastic was flat and fastened in a wooden frame that he said would be clipped into place on the table so that I would be fastened down and not be able to move. I didn’t like the sound of this! He also told me that it would be quite warm to begin with until it started to cool and that once he’d shaped it he’d put a fan on to cool it quicker but in all I’d have to lay there for about 5 to 10 minutes depending how quickly it hardened. He told me to close my eyes and try not to panic because as he stretched it over my face it would create a mesh of small holes so I would still be able to breath okay, although at first it would feel like I couldn’t. This once again didn’t fill me with confidence but it wasn’t too bad. It was warm and I did feel slightly claustrophobic but with him chatting to me all the way through the time soon went and when he put the fan on, it soon cooled down and felt quite nice, as it had made me hot. After it was all over I then had to go to another part of the hospital with my mask, where they told me to lay on a table that was like the mask maker. Above this table was what they called a simulator of the machine they would be using when I started treatment. On this I had to lay with the mask on while they took x-rays. They then came back into the room and made marks on the mask with a pen so they knew exactly where to point the rays that are going to kill off the cancer cells. About half way through, after I’d laid there for what seemed liked ages, I started to feel a bit panicky. I told the nurse I wasn’t feeling happy and she told me that they’d almost finished and that I’d done really well and she promised me that once I’d started the actual treatment it didn’t take long at all. She was true to her word and about 2 minutes later they released me from the table and I was able to take the mask off. I was then given a letter with all my treatment dates on - the first beginning on Wednesday 27th April 2005. Just before I went home I went to see Mandy, the cancer nurse. She is going to be with me all the way from beginning to end of my illness. On this visit she told me about the side effects that I was to expect from the treatment. This includes: the outside of my neck looking like it has bad sunburn which could peel and become sore (if this does happen they can give me creams to help), as the treatment goes on my throat will become very sore and painful to swallow so I might not be able to eat properly (she advised to try and keep eating as normal for as long as possible), there is also tiredness, which as far as I know is the worst side effect. I’m allowed to wear perfume but not on my neck. However, I can wear it anywhere else, even my hair. She also said that during the two weeks following the end of treatment, that would be when all the side effects would peak and that I should then start to gradually feel better.

The mask...

Monday 11th April 2005

I went to the hospital to see the Orthodontist to have some x-rays taken. I was told the radiotherapy can affect the mouth and they needed to know that the teeth and gums were healthy before hand so that if there was anything a miss they could fix it now. He said I don’t want to start with toothache half way through treatment and have to have it fixed while having a sore mouth. He also said that I would have to brush my teeth 4 times a day, with salt mouthwashes in between. Anyway, while I was there, one of Mr England’s ENT registrars came to see me and said they couldn’t understand how I’ve got this type of cancer without smoking and they are still puzzled over it. What they also can't understand is with me not having that "trigger" to set it off, why, once the cells started to grow for no reason, didn't my immune system attack it - as in theory that is what should have happened. So he asked if I'd mind taking part in a research study. At the moment they have a mixture of 49 healthy people and those who suffer from head and neck cancer, who have agreed to do it. They need 60 altogether. In practice I don't have to do anything except give some blood, which I did while I was there.

With this blood they are going to study it virtually inside and out but in particular they are looking at my IL-10 and IL-12 chemical levels. He said that many cancers cause changes in the chemicals that are produced naturally by the body. It turns out that IL-12 are the good guys and are supposed to inhibit cancer growth, whereas IL-10 does the opposite so I guess my good guys aren't doing what they should or has been out numbered by the bad guys IL-10.

Unfortunately this study is going to take years to do so I don't think I'll get to see the results but it looks like I'm helping others with my type of cancer and the health service, as I felt like they were doing so much for me yet I wasn't giving anything in return. Now all I have to do is wait for is the 27th.

All previous entries were written when I decided to make a diary of “my” cancer so it is written from memory of events that happened .

The following was written as it happened. When I started my treatment I wrote a bit each day  depending on how I felt. If some days I didn’t feel up to it I updated as soon as I was able.

Wednesday 13th April 2005

After Monday’s visit to the hospital and what the ENT doctor said I had some questions that I didn’t think to ask at the time so I thought I would go and have a word with my own GP. One question was if my immune system isn’t working properly and if I have cancer somewhere else in my body does this mean that it will grow because my body won’t fight it? He answered all my questions in great detail so I will just write it simple - in answer to the question above he said no. Another question was if I get ill with something that isn’t related to cancer, does this mean that I’ll be really ill? The answer to that was also no because if that was going to happen then since this all started I will have been in contact with all sorts of germs and, touching wood, I haven’t been ill other then a cold and that ran the normal course - whereas if my immune system wasn’t working at all then I would have got something. The last question was, why has my immune system all of a sudden gone out of sync? He didn’t really know, he just knows that sometimes it happens. I also wanted a sick note for work as I think it’s now time to stop working until I’m better as I’m getting more tired. I did ask if it said in the report from the hospital what grade it was. He told me there are 3 initials that grade cancer which are “TNM” - they stand for Tumour, Node, and Metastasis…the size of the primary tumour (T), whether the lymph nodes have cancer cells in them (N) and whether the cancer has spread to a different part of the body (M). He told me mine is T2 N0 M0 which means that my tumour is affecting more than one area of the larynx but the lymph nodes are clear and there is no spread of my cancer to other parts of the body.

Wednesday 13th April 2005

Got a phone call from a lady named Claire. She is from the Health Centre at the Oncology unit at Princess Royal hospital where I will be having my treatment. Mandy has been in touch with her and thought it would be a good idea for me to go the centre, just for a chat about what I’m going through at the moment and to talk to someone about how I’m feeling about my cancer and the treatment I’m about to start. Claire said she’d be there on Tuesday 19th and made an appointment for me at 10am.

Tuesday 19th April 2005

Spent just over an hour with Claire, she is really very nice and we had a long chat about all sorts of things, about if I was sleeping and eating okay and at what times of the day did I feel the lowest also what thoughts did I have about my illness and the treatment I’m about to receive. She also gave me a relaxation cd that I have to listen to during this next week hoping that if I practice what is said on the cd it will help me relax while I’m wearing the mask.

Thursday 21st April 2005.

Listened to the CD twice yesterday and it was great, very relaxing, so I’m hoping when it comes to having the mask on for treatment I should be able to tolerate it without feeling panicky. Claire also phoned yesterday and asked if I wanted to go in 40 minutes earlier (1.30pm) then my appointment time next Wednesday (27th) just to have a chat and get me relaxed before the radiotherapy at 2.40pm.

Here is a before picture - 9 days before I start treatment…

Monday 25th April.

Two days to go before I start my treatment, getting a little apprehensive but other than that not too bad.

While it's quite quiet with nothing much going on yet I thought I'd take this oppitunity to thank some wonderful people who are helping me through this.

A few doctors at my local surgery - Hedon. In particular Dr Stephenson GP(who was wise enough to send me quickly to see Mr England.)

Mr England consultant ENT surgeon - Hull Royal Infirmary.

Mr O'Toole Oncologist - Hull Royal Infirmary.

Professor Leslie G. Walker Director of Oncology Health Centres - Princess Royal Hospital.

Mandy ( cancer nurse) - Princess Royal Hospital.

Mr Baxter Orthodontist Hull Royal Infirmary.

Claire Hebblewhite Specialist Research Nurse (Behavioural Oncology) - Princess Royal Hospital.

Pictures and information about Hull Royal Infirmary, Princess Royal and Castle Hill Hospitals

Many thanks to the nurses taking CT scans, x-rays, the ones that looked after me while having my biopsy operation.

and last but not least in the health service are all the nurses etc behind the scenes who I've never met and probably never will many thanks.

I would also like to thank my hubby Barry and daughter Claire for all their love and support I don't think I could gone through this without them. You both know how much I love you.

Just one more person that I'd like to thank and even though he is thousands of miles away in Canada, he has been and still is a rock for me and a wonderful friend and has a way of keeping my spirits up when I'm feeling down and always knows how to make me smile. Hugs and thanks to Paul.

Treatment - day one - Wednesday 27th April.

Today is the first day of my radiotherapy treatment. Understandably I'm nervous and even though my appointment isn't until later this afternoon I've been up since 4am not been able to sleep, so thought instead of tossing an turning I'd get up and watch a film to try and calm my nerves a little. So after I have finished here I will go watch "Under The Tuscan Sun".

My thoughts keep drifting to what this next month is going to hold for me!

Treatment - day two - Thursday 28th April 2005

The treatment wasn't as bad as I feared and once again the nursing staff were fantastic at reassuring me. Claire even set it up so I could have a few words with Alf before my treatment he's the guy who made my mask. ( In a previous post I'd mentioned I was slightly claustrophobic when wearing it). Anyway he said he'd been and looked at my schedule as to how much radiotherapy I was going to have each day and it's only 2.5 mins each side of my throat so in total 5 mins he said that is less time then it took to make the mask and I did fine with that.

I was a little nervous when I first laid down and they fixed the mask to the table as I'd forgotten how tight it was but I closed my eyes and let the relaxation cd run through my mind and that helped a great deal and it was soon over with...

I haven't had a very good night's sleep, I don't know why as I felt fine maybe I was still worried about today as the thought of that mask is still bothering me.

Only 19 more days to go!...smiles

Treatment - day three - Friday 29th April 2005.

Day three already! Yesterday was better then the day before, once they shouted me through after running 40 minutes late the nurses were very organised more so than my first day. It seemed like no sooner had I laid down and they clipped the mask into place that they were coming back and unclipping it, I'm also getting used to the noise the machine makes so have an idea at what stage it's at before stopping.

I have now got a slight skin reaction starting, the skin around my adams apple and a little each side has turned pink it sometimes feels sore like sunburn. One of the nurses had already given me some cream yesterday for when this happened, have to use it twice a day and can't state strongly to keep the sun off my throat ( they say this when one of the best weekends weatherwise so far this year is predicted...I dare put a bet on it that this year is going to be one of the better summers because I can't get out there and enjoy it...)

I also got the chance to have a word with Mandy (cancer nurse), I had a couple of questions for her the first being would my voice return to normal after it was all over. She couldn't make any promises as she wasn't sure but she thinks I will always have a husky voice but not as bad as it is at the moment. The other question was how long after the treatment would I feel well enough to want to go away for a few days break, she said this varies from person to person as everyone is differant but working on an average she hoped I'd feel like it about 8 weeks after treatment has finished. So now looking forward to the end of July!

Treatment - day four - Saturday 30th April 2005.

It took a bit longer yesterday, I don't know why as I didn't have anything differant done just was laid on the bed longer, maybe they were busy chatting about the bank holiday weekend before deciding to release me..lol.

Even though I was there longer I was still quite calm which surprised me although I was letting the relaxation cd go through my mind once again, more so when they didn't come to me when expected.

I've also got a bit unsettled as to how bad I am, when I was already for leaving the nurse said; "See you tomorrow" I told her that I wasn't in again until Tuesday with it being a bank holiday, she asked me if I was sure, I said; "That there's no mention of it on the sheet with all my appointment dates on it and that my next one is Tuesday". She said; "let me go check". When she came back she asked if it would be okay for me to come in today (Saturday) at 10am because with some patients they don't like to leave treatment longer then the 2 day weekend that are normally missed. I said it was okay but my mind started working overtime again.. Why am I one of "those" patients?...is it worse then I'm being told, so that it can't be left one extra day?. I'm one of those people that never seem to ask questions at the time, chicken I guess.... but today when I go I'll be asking. There is also one good thing to come out of going today it means the treatment ends one day sooner then I expected.

A few days before I started my treatment I watched the film Troy (Brad Pitt) ever since then to help me get through this and as the radiotherapy machine is making all it's little whirling noises and afterwards as well when my neck feels sore or I get a dry cough all of a sudden I use my imagine that the cancer cells are the bad soldiers in Troy and that the radiothapy are the good soldiers and boy are they having a battle...... just hoping my good guys win.

Tonight (Friday). I haven't slept well at all,  I had a fitfull sleep up to 1am then I just laid there, wasn't in pain or anything just couldn't sleep ( just stuff going round and round in my head) so I came down stairs and watched tv for a while, thank heavens for all night tv!. I think I started to doze around 2 til 3.45 but since then I've been awake, so made myself a coffee and thought I'd catch up on here before my day begins...

Post Script

I went for my treatment and I wish it was like it everyday. With it being a Saturday there was only 4 of us there and we were actually seen on time. When I was called through I told the nurse that I was feeling concerned about having to go today instead of going back on Tuesday and was the cancer worse then they were telling me. She assured me that it wasn't but I was classed as high priority as all neck, head and throat cancers are because for some reason it seems to grow quicker in those areas unlike elsewhere, like the prostrate gland for example so they like to treat people like me everyday, I asked would I have to come in tomorrow (Sunday) she said no it's only because it's a bank holiday and 3 days is to long where as a normal weekend is fine as the stuff they are using to treat me is still in my body fighting for at least two days.

I was already feeling low today before I went but when I came out the treatment room my hubby was talking to another couple. As I walked up the nurse came and took the man away for treatment and after I'd had a few words with his wife (which I wish I hadn't) I felt even worse and wish I could stop now and take the chance that the amount I've recieved so far would kill it all off. She said that after he'd had his treatment today that also happened to be for throat cancer they were going to admit him to a ward to have a feeding tube fitted in his stomach. They are going to keep him in until Tuesday because he'd been three days unable to swallow, not even his own saliva and he this was only his 12th day of treatment with another 8 to go! Makes you wonder what he'll be like at the end of those 8.

I'm scared, I don't want to go through that, I've never smoked, his wife said he had but doesn't now, so why did I have to get this and have to go through all this with none of it being my fault? What have I done to deserve it? I've also been thinking that seeing I've got it without smoking does this mean that once I'm "cured" it will still come back for no reason? No point in asking the doctors any of this as they won't be able to answer because they won't know.

Treatment - day 5 - Tuesday 3rd May 2005

Counting this in stages so after today I'll be a 1/4 of the way through....

All my treatments have been put to mornings so today is at 9.20am. It's strange as I'm feeling quite nervous yet I know what to expect.

I still keep thinking about Saturday and meeting that other couple where the guy couldn't swallow.

Will post more later after I've got back...

It went really well today I got there about 15 minutes before my appointment as I wanted a word with Mary(oncology nurse) to chat with her about my concerns about not being able to swallow later on in my treatment, she sort of put my mind at rest by explaining that the guy I met on Saturday could have cancer in a differant place in his throat to me so that could cause the swelling to stop him swallowing whereas with mine being in the larynx I should be okay. But as I said she sort of put my mind at rest as she could have said that just pacify me, then when/if it happens I'd just have to deal with it.

Anyway I got called in on time and was walking out the hospital at 9.30am. Driving home, my neck as usual began to feel like it had been sunburnt and felt really hot but as I write this at 1.30pm that has disappeared and it feels like I haven't had anything done, although my neck at the front does look pink.

Treatment - day six - Wednesday 4th May 2005.

It seems I was mislead on Tuesday The couple we met on Saturday gave us thier phone number so I called them Tuesday night just to see how he was, he came home on Monday after being in hospital since Saturday she said he was fine and still trying to eat normal, so I asked her if she'd mind telling me exactly where his cancer is and she said it's on the right hand side of the larynx. The same place as mine!. Why didn't Mary say upfront that it's possible that I'd be like that but also possible I might not as each person is differant sooner that then give me false hope.

Today took longer then I expected, first of all they were running 30 minutes late. When I got up this morning I noticed more mucus at the back of my throat which they had warned me about, so after treatment I mentioned it to one of the nurses and she said she'd get another nurse to come and see me as they could give me something to help. So we (Claire went with me today) were waiting another 30 minutes, she then took us into another room where she asked a few questions on how I was feeling, had I lost my sense of taste yet? Did I have a dry mouth? Was I eating normal still? Anyway she went and got me a perscription for some saline in little bottles to be put in a nebuliser to help with the mucus also some more in litre size bottles they are to be used as a mouth wash to help the dryness beginning in my mouth. We then had to go to the pharmacy to get what was on the prescription which was another wait of about 15 minutes as there were people in front of us.

So what should have been only about 15 minutes like yesterday we were there about one and a half hours.

This afternoon it's beginning to hurt when I swallow and I'm feeling quite tired but I'm putting the tiredness down to having a bad night last night.

Treatment - day seven - Thursday 5th May 2005.

Every day I go now, there always seems to be something to do other then have my treatment. Today it got to be 10 minutes past my appointed time when a nurse came through and called my name, I didn't recognise her as one of the radiotherapy nurses so knew it was for something else, when I got to her she said she was taking me to see Mandy (cancer nurse) I told her that I hadn't been for my treatment yet and it should be soon as it had gone past the time I was supposed to be in, she said that I wouldn't be long and that they'd wait for me. It turned out that Mandy likes to see head and neck patients every Thursday for a catch up to see how they are doing and if they have any problems they can be sorted. The nurse weighed me, this I've never had done before so I'm thinking they are thinking it's coming up to the time when I won't want food so they'll be able to keep an eye on my weight to make sure I'm not losing too much. I then had to sit and wait (yet again) for about another 10 minutes until Mandy called me through to her room. As soon as I walked in I told her that I didn't know she was going to do this today otherwise I would have waited and wouldn't have bothered them yesterday about the excess mucus, she told me not to be silly, even if I had to come in everyday with a problem they want to know so that they can help as soon as possible. She asked the same questions I was asked yesterday, I told her I had slight pain when swallowing after yesterday's treatment but that it had gone now, but she still insisted in giving me a prescription for some soluble paracetamol and for something else that I can't remember the name of, I'm to take it 10 mins before I have anything to eat and it's supposed to coat the back of my throat to help ease it while eating, I told her eating was fine at the moment but she would insist. So I will hang onto it until I really need it. After Mandy had finished with me I went back to the treatment area and I was sat down only a matter of seconds before I was called through.

I had planned to make an appointment to see my own doctor for this afternoon so on the way back from the hospital called into the surgery. The receptionist said the only appointment they had left was for 3.15pm and that is when I have to take Claire to work so while I was stood there humming and arrrring she said that I could see the nurse/practitioner right now if that would help as she'd just had a cancellation, I accepted.

The reason I wanted to see someone is I thought I'd better get some of the medications that the hospital is now prescribing me put onto my records so that whenever I need them I can just get a repeat prescription without having to bother the doctor everytime. Even though I didn't need it at the moment she gave me a really big tub of the cream that I have to use on the skin on my throat, I told her that I had plenty for now but she said that will be one of the things I'll use the most of so it's best to have plenty in and not worry about running out of it.

I have started to notice that once it gets to middle of the afternoon I'm starting to feel more tired.

Here is a picture of my neck on day seven of my treatment.

Treatment - day eight - Friday 6th May 2005.

When I arrived the nurse apologised and said that the machine that they use on me had broken down so there would be at least a 30 minute wait or even longer, I thought what a wonderful start to the day. I told her I would go through and wait in the health centre it's a bit more relaxed in there where they serve coffee and biscuits, even though I have my bottle of water with me constantly so don't have a drink I like the atmosphere.

Anyway my appointment time came and the nurse walked in and called my name and said that she would take me to one of other machines (they have 3 altogether) and that there was one person just going in and I'd be next. I thought at last things were going good and when it came to it I was only 10 minutes late going in.

But when things go well you have to think this can't last and I was right, I'm not talking about me personally everything went well today. Although what happened later does affect me.

About 1.30pm I thought I would go and listen to my relaxation tape half way through the phone rang I thought my daughter Claire would answer it so when I'd finished I went and asked her who had called and she said she hadn't heard it so we listened to the answer machine and it was the doctor from the local surgery asking me to give call her as soon as possible because she wasn't happy with my dad's blood test results.

A quick catch up my dad has had bladder cancer which they treated with chemo and 20% of his lung taken away because of cancer, he came to live with us when he came out of hospital at the end of January until he recovered enough to go home, he started to pick up then all of a sudden he started to go downhill, to cut a long story short he had some bloods done on Tuesday and the doctor rang to say that she was making an urgent referral to the oncologist because she thinks there's something else going on. I questioned her some more and she thinks he's in the last stage of his life and hopefully some treatment might make his life last a bit longer, he's always said that if he's offered anymore treatment he'd refuse and I told her this, she said she wasn't surprised and if that is what he decides then all we can do is make him as comfortable as possible.

Okay, I had to ask didn't I? How long did she think he had left?. She said a few months or it could even be quicker if he has a heart attack or get an infection of some sort.

She also asked if we can cope at the moment I told her yes but she emphasised that if at anytime we can't or if he gets worse to let them know as soon as possible and they'd admit him to hospital.. what is it they say?.. "It never rain but it pours".

Treatment - day nine - Monday 9th May 2005.

Really quick today got there at 9.30am ready for my appointment at 9.40am and was walking out again at 9.45am.

I told the radiotherapy nurse that over the weekend my throat felt like it had a lump in it and I had assumed it was normal. She asked me what day of treatment was I on, I told her 9th, she said yep you're spot on in following the path she then said I had to now start eating soft food and drinking plenty. I asked couldn't I carry on eating normal? She said as long as I don't eat hot and spicy foods it was okay but that my throat would become so sore and the feeling of not being able to swallow would get worse that I wouldn't feel like eating normal.

While I was getting dressed afterwards the other nurse said that my appointment for Wednesday would have to be changed as they were going to give the machine a service and that they'd be able to fit me in before they begin so I've got to be there for 8.20am instead of 11.50am, that's great, at least it gets it over with for the day and I'll be able to do things afterwards without breaking up my day with having to go there.

Treatment - day ten - Tuesday 10th May 2005.

It's 3am I can't sleep for several reasons the first and most imporatnt is because my throat is very painful and sore, I can't even begin to describe how it feels, I suppose it is how it would be if I swallowed a razor blade, second I'm all the time waking up and having to drink water to try and ease it so that leads to third with drinking the water I'm having to get up to go to the toilet more often. It's a never ending cycle.

So I have got up and made myself a warm drink, all the animals thought it wonderful that they have got thier breakfast early...lol.. point is they'll also be hungry for thier next meal sooner.

What is also bothering me is the thought that this is only day ten and I have another ten days to go so how much worse is my throat going to get?..sigh.. I could really do with a big hug right now but there's no one here to give me one as everyone else is in the land of nod.

I'm going to go and watch a film, I taped Stuart Little 2 the other night I know it's a kids film but it looks like fun to watch.

Oh yes, I forgot to mention. I got a phone call yesterday afternoon changing Wednesday's appointment time again and also todays. It turns out the machine broke down yesterday morning so they have brought the service/maintenance for it a day sooner to today so my appointment for today has been put back to 3.50pm and Wednesday's is back to normal.

Will write again either later on or tomorrow...

Treatment - day eleven - Wednesday 11th May 2005.

This is a post script from yesterday...

The hospital had arranged for me to see a welfare rights officer at 2.50pm before my treatment at 3.50pm to see if he could find anyway to help me get any benifits while I'm going through this and not able to work. As I walked past Mandy's (cancer nurse) room she saw me and asked if I had a few minutes to spare, she asked me how I was and was there any problems I told her my throat felt really sore and I could feel a lump in it. She told me exactly what the nurse had said yesterday about it being normal but she said she'd have a look just in case there was an infection then if there was she could give me something for it. It was fine and looked normal for what I was going through as she backed away she commented on how well my neck looked and that it wasn't as red as she expected it would be by now and asked if I was using the cream. I told her I was and she said that my skin must have good healing properties as it looks really well.

After we had finished our chat I went to the reception and said that I was very early because I was seeing someone else first but thought I'd better check in, the radiotherapy nurse said that they had got the machine fixed sooner then expected and that I could go in in 15 minutes, I told her that I was meeting someone at about that time, so she suggested that I go and tell them that I could have treatment earlier then expected and that she was sure they wouldn't mind waiting a few minutes. She was right, The couple we saw the other Saturday was in the waiting room, he was hooked up to a drip so I went across to see how he was doing. He'd been admitted again on Monday as he still wasn't eating and he isn't allowed to leave hospital until he does, he asked if I could still taste food I said I could he said hang onto it as long as you can because it goes and food just doesn't taste of anything at all. He also said keep doing that and he indicated to my bottle of water because he hadn't been doing it as much as he should and they think that is what is causing the problems he's having at the moment, my water bottle never leaves my side and never has done since I started my treatment as that is one of the things they told me to do and that was drink plenty so even when I'm at home I alweays have a drink of some sort in front of me. He also asked about the skin on my neck I told him it wasn't too bad and his wife leaned forward and said you can hardly see it, he said are you using the cream I told I was he said so am I four times a day and look at mine, he lifted his chin up and it was a really dark red, so is this something else I have to look forward to as my treatment progresses? As this was my 10th day and it was his 19th. I like to know how people are doing but seeing someone going through what he is and me having the same cancer as him it's something I could do without seeing. It kinda scares me and makes me wish it was all over with. Anyway, as soon as I'd finished in the treatment room I saw the guy I was supposed to see and was walking out of the hospital at 3.05pm!

Nothing to report today as far as my treatment is concerned arrived 10 minutes before my appointed time, was called in right on time and left ten minutes later, I like it like that..smiles..

The worst part of my day was when our GP came to see my dad, she told him that his cancer in his bladder had grown so that it's now inoperable, it's also spread to his liver, kidney and possible his brain it's also returned to his lung. She was really very good at talking with him and answered all questions and told him that even though they can't cure him now they would make him as comfortable as possible. There was one question he didn't ask so as my brother and I saw the doctor to her car we asked her in her opinion how long she thought he had left. She said that she couldn't see him lasting much longer than 3 months! Even though he is ill and you can tell he is he doesn't look "that" ill we're hoping she's got it wrong.

Treatment - day twelve - Thursday 12th May 2005.

Very quick again today with no hold ups. Having more trouble swallowing, it's not that I can't it's just that it's so sore and painful I feel like I don't want to swallow, trying to liquidise all my food where possible if not then chewing it as much as I can so that it's as soft as it can be. Just wishing it was all over now.

Treatment - day thirteen - Friday 13th May 2005.

After today's radiotherapy I'm into single figures with only seven more treatment days to go! But it feels like forever.

Last night I slept downstairs because I was in so much pain when swallowing even drinking water was hurting and normally I've loved drinking my water, I thought I wouldn't disturb hubby with my tossing and turning so made a bed up on the sofa luckily I only woke a few times during the night and putting the tv on when I woke soon helped me drop off again. Two of the cats thought their birthdays had come all at once as they both snuggled down for the night on the quilt with me..smiles

Once again treatment time was quick today but afterwards I had to see Mandy (cancer nurse) she well and truly slapped my wrists for not taking the painkillers for the pain and sore throat and also the medicine that I have to take 10 minutes before a meal that lubricates the throat so makes swallowing easier, if you knew me you'd know how much I dislike taking medication of any kind but after our little chat today and all the pain I've been feeling I agreed it was time I started to take them.

Now I don't know if it really worked or whether it was all in my mind but I took both the painkillers and the syrupy stuff 10 mins before lunch and I was amazed at how much easier it was to swallow, it was the first meal that I'd enjoyed for days admittedly it was only potato and leek soup with 2 rounds of bread added then processed until it was a mushed up mess but it tasted so good.

Here is a picture on my 13th day...

Treatment - days 14, 15 & 16 - Wednesday 18th May 2005.

With only 4 more treatment days to go there hasn't been much to report for the last three treatments they have all gone smoothly. The only improvement was after being a "good girl" and taking my painkillers that Mandy insisted I take, the pain while swallowing has improved 95% even to the point where I ate a beef sandwich followed by chocolate sponge and icecream yesterday without having to put them in the processor first, I did of course chew every mouthful until it was like pulp before swallowing but it felt good to be able to eat it on my own so to speak. After taking my last allowed painkillers of the day they wear off later so I'm still waking up in the middle of the night where my throat is very dry and painful so I mentioned it today to Dawn another nurse and she said that she would have a word with the doctor and be able to give me something tomorrow to help during the night.

The only other thing that is getting a little worse but not bothersome is the redness on my neck, I just keep applying the cream several times a day more then they've told me to actually it's supposed to be three times a day but I think it's more like six! I put quite a bit on when I first get up in a morning as it's been without all night, then just before I go for treatment I put a thin layer on, when I come back I put another thin layer on, later in the afternoon another thin layer then quite a bit when I go to bed so that it lasts all night. But looking at it, it doesn't look too bad when I've compared it with others I've seen that's having the same sort of treatment, even the nurses keep saying how good it's looking considering at the stage I'm at.

My dad went with me today to the hospital because he had an appointment to see the oncologist to have a chat about what treatment he's going to have for his bladder cancer. Luckily there was only 45 minutes between our appointment times so wasn't hanging around too long. The doctor thinks it will be best for him to have 5 days radiotherapy and hopefully that will shrink the tumour enough to make him stop bleeding while peeing and make him more comfortable, I did ask what size the tumour was he said the report from the guy who did the camera into the bladder didn't say the exact size but he did say it was of a significant size and was starting to obstruct the tube leading from the left kidney, that is strange as dad hasn't complained of any pain on his left side but has his right so I asked the doctor what that could be and he said to be honest he didn't know as the ultra sound on his liver and right kidney had shown everything to be okay so far, so it has him puzzled.. Personally I'm thinking the cancer may have spread to his bowels and this is causing the pain, why I'm thinking this is that he's alternating between constipation and the runs for no apparent reason.

Below is a picture of my neck on day 16 of treatment...

Treatment - day seventeen - Thursday 19th May 2005.

Went a little earlier to the hospital today as we took some books to donate to the health centre, they then sell these to the patients and their families to help pay for the coffee, tea and biscuits that they provide there free of charge.

After my treatment saw Dawn (cancer nurse) about the pain I was having during the night and she had a word with a doctor and he prescribed some stronger painkillers, as I've mentioned before, I hate taking pills of any kind and only under great persuasion from Mandy and the pain I was feeling that I agreed to take the lesser strong painkillers the other day so I will carry on taking the "normal" ones during the day as they help and take the "stronger" ones just before bedtime to help me through the night.

Treatment - day eighteen - Friday 20th May 2005.

After taking my first lot of the stronger pills last night it was the first night that I'd had for a long while that I had quite a good nights sleep, I kept waking but I think that was because I'd got so used to it over the weeks that I'd been waking up but I wasn't in pain and I soon fell asleep again. Sadly I was in the middle of a dream when I was still woken up at 3.30am by my dad as he needed help to go to the toilet and I never went back to sleep again but I'm not complaining as that was a good time for me considering on previous nights it had been almost every hour I was waking in pain.

After today I only have two more days of treatment to go! ..wow.. where has the time gone? At the beginning of the 20 it seemed like it was forever and here I am now with only 2 left.

Got a phone call from the hospital yesterday about my dad's treatment. He goes on Monday to be measured up and marked out in the simulator ready for his treament to begin on Thursday. So I'll only get one days rest from going to the hospital before I have to go again for 5 days luckily after going for 2 days it's a bank holiday weekend next week so at least we'll get 3 days break between his treatments.

Will add more later if anything differant happens while at the hospital today, if not catch you after the weekend...

Treatment - day twenty - Tuesday 24th May 2005.

Last day...yeahhhhhh...

On Saturday morning I woke up at 12.30am gasping for breath it really scared me, after taking a deep breath it went away but for about an hour afterwards I was frightened to go back to sleep in case it happened again, no one had warned me that this could happen, I don't know what it was.

On Sunday I had to be careful because if I didn't concentate on the way I swallowed my saliva it went down the wrong way and I was coughing for ages but soon learnt the knack of how not to nearly choke myself..lol..

Monday's treatment day nineteen went as usual nothing to report.

Today is my last day so I thought I would take a few thank you gifts to the hospital, for the radiotherapy nurses I gave them a card and a large Quality Street cake to share out when they have thier coffee, for the staff in the heath centre I gave them a card with a donation in it, when Mary opened the card she thanked me and said they would use the money to buy coffee and biscuits for the centre and for the cancer nurses Mandy, Dawn ect I gave them a big box of chocolates to share between them all. They all wished me well but with me taking my dad over the next week I'll still be seeing them for a little while longer.

Before I left I had to see Mandy for one last check up to see if I had any problems that she could help with, there isn't any but she gave me her phone number in case anything crops up she also said she'd be making an appointment for me in 2 weeks time when I will be seeing the consultant at the Princess Royal hospital so that he can check that I'm healing okay after the radiotherapy then I'll have another appointment four weeks after that at Hull Royal Infirmary to see the whole team amongst them will be the oncologist and Mr England the ENT specialist I might have a scan or x-ray at that time to see if the cancer has gone but I'm not sure about that until my appointment comes through.

I guess this will be my last blog for a few days as there won't be nothing much to report on a day to day basis now I've finished but if I get worse with anything ( they have told me the 2 weeks after treatment has finished the side effects reach thier peak and I'll get worse before better) or as I get better I will write things down as they happen.

Many thanks to all who have read this  hope it helps anyone who has to go through cancer of the larynx and the treatment of radiotherapy.

Below is a picture taken on day 20, my last day of treatment...

Wednesday 25th May 2005.

I was silly last evening I thought I would have a salad nothing wrong with that I know, I put it in the processor and chopped it until it was in really fine pieces it looked and smelt good and I was really looking forward to it the only thing that I forgot was that the nurses had told me not to eat anything spicy and didn't realise that one small spring onion would be classed as spicy. Took a couple of mouthfuls and chewed them well then swallowed..wow... my throat felt like it was on fire and I couldn't eat any more had to make do with a plain sandwich I guess we learn by our mistakes and will question any food that might be spicy even if I think it's not.

Wednesday 1st June 2005

Here is the latest picture of my neck taken a week after I've finished my treatment, the skin is starting to feel tight so it must be drying out and I have to keep applying the cream lots and often.

To anyone that has to go through this, my thoughts and prayers are with you and one thing I'll never forget that one of the doctors told me when I was first diagnosed and that was "You're going to have to be strong".

 So stay strong and you'll get through it, I promise.

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