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.
Thanks to Eve and Derek for your comments, don't worry I'm not going to stop blogging altogether just not doing as much, hugs Linda

Tuesday 24th May 2005.

Last day...yeahhhhhh...:D

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...

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...

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.

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...

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...

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.

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.

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...

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.

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".

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.

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.

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.