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Monday 23^rd September 2019

Had a good weekend – not as sleepy as the last one and the weather on Saturday was fantastic. We managed a trip out on the 2G’s – just up the lane to the weir.

We foraged a few sloes and hazelnuts (Nigel will make some Sloe Gin and me some hazelnut paste).

It felt really good to be out in the fresh air under a beautiful blue sky in our “green and pleasant land” – though even then I did have a slightly dark thought ‘If this doesn’t work look what I would be missing!’

Today we start week five and only having happy thoughts and a positive outlook.

Treatment went well though the mask was very tight – I had a small panic and now I’m worried – if it’s this tight on a Monday what will it be like on Thursday and Friday – we will see.

After I’d been zapped Carol had another look at my wound and gave me some new Flaminal cream for the red sore bit at the front. She also introduced us to my dietician. One thing I wasn’t going to have was her preaching at me (my past experience of them) but I’m glad to say she didn’t. I told her about Slimming World and Nigel said about slipping the odd cream sundae in – she said he was doing the right thing.

Tuesday 24^th September 2019

I slept a little later today so was late with my pain killers. My neck was painful to move plus it had wept a lot in the night so I was caked up. I dabbed a cold wet flannel – the cold felt good but the wound was pumping white puss which was not nice.

Treatment was brought forward half an hour today so only a flying weighing visit to Slimming World today (shame because they were having a tasting session). I put on two pound this week which the hospital thinks is good – I however don’t (any weight gain is depressing to me).

Parking was a struggle today (worst ever I think) we ended up half on the pavement on yellow lines after playing dodgems around the Car Park for ten minutes.

Got to the appointment on time – another new team. I was done quite quickly but they forgot to bring Nigel back with them – I wasn’t going to move until he came so I asked where he was and I heard her shout for someone else to get him out of the room. They won’t forget next time!

Back home Emma came and gave me a haircut and colour (less hair might help with the mask tightness). She also did a marvellous job on a wig I got through the post – no I’m not losing my hair it’s for a special occasion – more about that on a later Blog.

Wednesday 25^th September 2019

Early this morning at 04.30 I had to take more pain killers and for the first time at that hour I had to give my wound a good clean up – very messy again.

At treatment they told me they would be doing a scan again to refine the measurements for my treatment – I asked them to talk me through it over the Tannoy and not to take too long about it.

Thankfully they kept me well informed so I didn’t panic like last week (no more thoughts of Triffid invasions) and all went well.

My throat is still very red and sore – it still weeps a lot but I have been putting on lots of cream which does cool it down a lot – so all things considered it’s not too bad and there are now only seven more sessions.

Thursday 26^th September 2019

A sunny start to the day – I slept in until 9.00 so even though I was up for a couple of hours in the night I’ve had plenty of sleep – I had to clean up the wound again and put more cream on.

I’m a bit excited that it’s nearly the end of week five.

Another new team today – so we started our training of them. I am always surprised at how the feel of the mask changes from day to day – yesterday it was a bit tight but today not so much.

After treatment we saw Carol – she gave me some cool pads to help with the heat around my wound.

She also gave a bit of a heads up to what happens after my course of treatments completes. Apparently the side effects continue (and may get worse) for about ten days after the last zapping. Then it will be 10-12 weeks before the body has replaced all the cells affected by the radiation and that after that a follow up MRI scan will be the proof (or otherwise) of its success. It may take even longer for me to get back to my ‘normal’ self.

They will be monitoring me regularly during the first part of my recovery at least.

Friday 27^th September 2019

I had a bad night with my wound. I had put the Flaminal cream on before I went to bed but I presume because there are more open bits it was painful and stinging all the time. I got up about 02.00 and bathed it all over. I tried one of the cool pads Carol gave me yesterday but it didn’t seem to work very well. I went back to the Epimax cream which was better.

We had a little wait for therapy today but it passed quickly – Beth (the Receptionist) brought a few After Eight mints to us and we all joined in a conversation about parents and music quizzing.

Treatment was OK – the mask wasn’t as tight today and zapping was short.

So that’s it for another week. Only one more to go and next week I will find out exactly what happens next as I don’t have any more appointments yet for after next Friday.

Monday 9^th September 2019

My appointments this week are all around lunchtime so today we are going to have lunch later – after doing a bit of shopping on our way home.

I have noticed my gums are getting very sore making it hard to chew and I’ve been a bit worried about how sore and blistery my lump has become over the weekend. I mentioned it to the nurses – they did seem a bit concerned and were very gentle putting the mask on.

I think the treatment was a bit longer – well it seemed that way to me.

Afterward they asked us to wait so Fiona could have a look at my lump. She told me that some soreness is expected but she thought there may be an infection in mine.  She took my blood pressure, heart rate and temperature which were all fine.

Her opinion was that we just keep an eye on it for a few days.

Tuesday 10^th September 2019

I had a reasonable night with the pain killers.

This morning my lump is painful to touch, red and has been weeping a bit – I do hope it is not infected.

Slimming World weigh in today and as I’m increasingly having to eat more soft food due to my sore gums and throat I reckoned a loss was on the cards – turned out to be ½ lb but happy with that.

Treatment went OK – they put Clingfilm over my neck to help prevent it sticking to the mask. They also took a swab of the discharge so they can see what it is. Just have to wait for the answer and the plan.

Wednesday 11^th September 2019

A good night’s sleep – my lump was weeping a bit but the pain relief I took in the early hours really helped. It doesn’t feel as sore or tender which is better for putting the cream on.

Treatment today was a bit easier – not sure why – maybe because my lump isn’t as sore or could be I’m getting more used to it.

The mask was tight but not so unbearable as it has been – I’m wondering if it’s an abscess in my lump which has been giving me pain not only in my neck but in the back of my head which made it hurt on the headrest. Now it has gone down a bit there is less pressure which helps.

Thursday 12^th September 2019

After such a good day yesterday today has been very different – I’m so tired and my neck is still tender.

Another early appointment – no problems getting there but very busy in the Car Park – managed to find a space on the double yellows – OK with my Blue Badge.

Treatment went well – no dramas – they again had a good look at my neck and used Clingfilm – no answer from the lab yet though.

We saw Carol afterwards and she too was concerned about how red, angry and hot it is. She thinks I should have some anti-biotics and maybe some steroid cream. She will let us know tomorrow and will chase up the results of the swab they took.

She also gave me another mouthwash to help with the dryness I’m feeling more now (a bit like a sticky gloopy saliva feeling).

Friday 13^th September 2019

I had a good night’s sleep despite my lump weeping quite a bit.

Today is day 15 which means I’m halfway through. I have to say it has gone by so quickly, much faster than I thought when it started.

Our friends Tim and Debs have read last week’s Blog and messaged me – we are going to meet them for lunch early next week – just like we used to do. We’re looking forward to a lovely catch up.

Today the mask was very tight – even with both shims removed – but I managed to get through it even though it felt like it was choking me. After treatment we saw Carol again and a Doctor who had a good look at my lump. She said that it was best to let the abscess weep (better out than in) and prescribed a course of antibiotics (for 2 weeks) although she wasn’t sure if they would work.

When we collected this from the Pharmacy I was told to stop taking my daily statin until after the course is complete.

Back home and after lunch I slept most of the afternoon – they were right at the beginning when they said I would get tired very quickly – but I get the weekend off – two days to relax.

Monday 26^th August 2019

Today I began my Radiotherapy treatment on the cancerous lump in my neck. I found it in early July and since then I have been poked and prodded MRI, Ultrasound and CT scanned along with having a biopsy extracted from it. All to find out what it was and whether it had spread – luckily it hasn’t but over the weeks it has grown in size.

I have been through all the emotions you can get – shock, fear, anger as well as the why me feeling. I have shed a few tears as well along the way although I’m trying not to – being very British with the stiff upper lip thing is just not me.

A couple of weeks ago I had a mask made for my head and shoulders – to make sure I am in exactly the same place for each treatment and unable to move during it. I have to say it wasn’t a pleasant experience. As one of the nurses said ‘Nobody would volunteer to have one made unless it was really necessary’.

So today is the first of my daily sessions for the next six weeks – only week days though – I’m looking forward to the weekends already.

It was much as I suspected – scary and horrible. We had a chat beforehand about the likely side effects – sore throat and skin irritation being the first. To help I have been given a supply of mouth wash some moisturising cream and a big box of paracetamol. Later I may find it difficult to swallow and lose my appetite. They don’t want me to lose much weight though as this could affect the fit of the mask.

I did have a bit of a panic attack when they first fitted the mask – luckily Nigel was there and they took it off until I calmed down. Second time it was better – still scary feeling restrained – everyone left – I was all alone, and that was scary too. They told me they would be watching me on CCTV and if I needed out to raise my hand.

In my head I started to talk to my mum – I’m sure she was there holding my hand – it reassured me. I was grateful when I again felt Nigel’s hand and for today it was all over.

Tuesday 27^th August 2019

Not feeling as bad as I did yesterday but still not feeling good about it. My neck aches all the time but the paracetamol takes the edge off.

I now have a new routine – mouth wash and moisturising cream four times a day.

Slimmimg world was good – I got presented my ‘Women of the Year’ sash & certificate and also lost 4.5lb- I’m now a pound less than when I had the mask made which I’m sure won’t make any difference to the fit. I mustn’t lose too much more though.

I thought it would have been easier today but having the mask fitted is still scary – and they managed to pinch my skin (on my shoulder) as they fitted it – they had to take it off and reposition me a bit. The setting up after I was secured didn’t take as long but the treatment itself felt longer than yesterday but that might have been my imagination.

I did find out why I can’t use a hair drier (mentioned in one of the many leaflets) – the nurse said it’s because the heat can make the skin irritation worse. She also said I might lose a bit of my hair at the back of my neck – I thought that only happened with chemo.

Wednesday 28^th August 2019

I had a bad night – my neck and head hurt and I couldn’t find a comfortable position – I got up at 4.30 and took more paracetamol which helped.

I’m feeling a little more anxious than yesterday – what if I’m going through all this and it doesn’t work? It didn’t help that I had a bad dream which was very vivid – I was pushing Nigel away – thinking he would be better off if he didn’t have me to look after. Scary.

It was still a bit daunting having the mask placed over me – it doesn’t seem to be getting any better. Nigel took a photo of me on the bed before the treatment began.

They did a few adjustments and did a scan before they zapped me from a different angle – there were a few bright flashing lights I could see even with my eyes closed. My vision was really blurred afterwards and I felt a bit dizzy but Nigel was there to help me back to the changing room and my wheelchair.

Redressed and on our way home – we were only there for 45 minutes so not long really – it just feels that way.

Thursday 29^th August 2019

It’s a later session today – plenty of time for a refreshing shower and a leisurely breakfast and lunch.

Not feeling so good – a bit lethargic and emotional – I seem to be feeling scared all the time and my neck aches nearly all the time now. Nigel is so good – he keeps hugging me and telling me it will be fine (my brick).

It was a busy day at the hospital – cars running around the car park trying to find a space – we were lucky – one pulled out in front of us.

I had to have a blood test (as a base line the nurse said) – I’m assuming I will be having these done regularly throughout my six weeks treatment.

After I was zapped (about the same as yesterday) they didn’t bring Nigel back but one of the nurses helped me back to the changing room.

Then we had a catch-up chat with Carol (one of the Head & Neck Clinical Nurse Specialists) – I did ask if my face would swell up. She said it would which explains why the mask hurts my nose and chin – adding that I should mention it to the team as they can tweak it a bit. Apart from that she said that everyone says I’m doing well.

 

Friday 30^th August 2019

Another not good night but the paracetamol are still working but need them every four hours or so.

I’m feeling tired but it’s the last session of the week so I just needed to get it done.

We got there a bit early so we could change some times on the days when I have to see the doctor as well as get zapped. Originally there would have been over three hours wait between them. Luckily there was no issue getting them adjusted – now the longest time between them is 10 minutes – result.

I was a bit emotional today at treatment time – I tried to tell them that the mask is hurting me too much and they did take a small bit of plastic away but it was lying on the hard plastic headrest that also hurts the back of my head.

Again they didn’t bring Nigel back after my treatment and this time I had to walk back to the changing room on my own – I felt dizzy and had to hold the wall – something must be said on Monday.