by
uksweetheart
@ 2005-04-23 - 08:18:15
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.
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…
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 has been written as it happens. When I start my treatment I will try and write a bit each day but that depends on how I feel. If some days I don’t feel up to it I will update is as soon as I am 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…
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...
.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...
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