Swelling, Lumps and Puffiness – The Cancer is Back

(To read my cancer story from the beginning start here – April / May 2018 – You Have Cancer)

I’d finally had my operations, finished my 33 sessions of radiotherapy, 2 sessions of Chemotherapy and was back home.

Having seen my support team on the Wednesday of the last day of my treatment they said I was to initially have weekly reviews at Coventry which was great as it meant a whole week off with no travelling anywhere 🙂

Having been spending week days at my parents house, as it made it easier for my mum to drive in to Coventry every day, now I was in the position of not having to go there, it meant I could finally move back home properly after about 15 weeks.

It was lovely to be back at home properly, I started doing more driving, more shopping and getting back in to the old routines, it also meant I could start doing the school runs again, something my father in law had been helping with.

I was pretty knackered by the end of the week and realised about the mid and long term effects of the radiotherapy.

Mu mouth never did really get any of the symptoms my Ghost of things to come had warned me about but although a lot of the general swelling had gone down a lot, I still had quite a bit on my upper neck chin, lower cheek, which when speaking to my consultant about he explained it was lymphoedema due to build up of lymphatic fluids caused by the damage done to my lymph nodes during the operation and worsened by the radiation.

He arranged for me to see go to a lymphoedema clinic for lymphatic massage and treatment.

I also pointed out various lumps, bumps, swellings around my neck which he again put down to the lymphoedema

Later that week I noticed a something different to my swelling, rather than being what I considered a swelling or a bump, this was more of a puffiness and it was in a different place, more in my cheek, where my cancer had been.

It seemed to get worse and I was convinced the cancer had come back 🙁

I mentioned it next time I was at a support meeting in Coventry and they made an appointment for me to see my oncologist later that week.

My oncologist had a good look inside my mouth and said everything looked OK, then looked at my last scan results and I thought she went quiet and looked worried, she didn’t say anything but said she would make an appointment for another scan.

I went home feeling it was bad news .

This feeling that it was bad news was reinforced by receiving my appointment within 48 hours for my scan which was only 2 days later, I thought to myself, this must be serious for them to act so quick.

I went for my scan, they couldn’t tell me anything and the waiting for the results began.

All of this coincided with the hole in my neck opening up again and the smelly fluid weeping out, it also coincided with my neck swelling more my check getting more puffy and pain coming back.

I was 99% convinced my cancer was back

I got worse and worse as the week went on, I got depressed for the 1st time and when talking to my support team asked about palliative care and where I could go to die.

They tried to convince me not to worry too much, said my oncologist hadn’t said anything and there were no results yet from my scan, I was still convinced this was it though.

That weekend my temperature was sky high again, my swelling was worse, I had a fever and remember waking up on my bedroom floor as I had just slumped there after virtually passing out.

No idea how long I was out for and nobody else had noticed, so I just crawled in to bed phoned my mum on my mobile and asked her to come over (I didn’t want my wife and kids to know I thought my cancer was back).

She was over within 30 minutes and I told her I was convinced my cancer was back.

She made me more comfortable, got me to have paracetamol but by Sunday night the swelling and pain in my neck and cheek was getting worse. I also noticed the swelling was spreading from the right of my neck where it always was to the left of my neck.

I was also feeling a bit sick, went to the bathroom, coughed and the hole in my neck seemed to burst open more.

This time the stuff coming out wasn’t just weeping but was nearly dripping out

I noticed that if I squeezed either side of it even more came out, almost pouring out – It was a clear beige coloured fluid again and the smell was unbelievable, what I did notice though was the more that was coming out the more the pain was reducing until I was virtually pain free again.

As it was a Sunday I didn’t want to go to hospital, but instead waited until the morning before ringing my support team before asking what I should do.

By then, although I was pain free again my temperature was sky high and I felt really lousy, I told them this and they told me to get to the hospital straight away.

I phoned my mum again, she picked me up and off to hospital we went.

I went through the triage system in A and E with people I hadn’t seen before, I felt so bad, they put me in a side room on a couch and I tried to sleep, eventually one of my head and neck team came and saw me also a nurse came in with my file.

My consultant squeezed more of the gunk out from the hole in my neck and sent it off to be analysed, he also said I was to be admitted to hospital again straight away and went to sort out a bed for me.

Whilst he was out I spoke to the nurse told her I was convinced my cancer was back and was waiting for the results of my scan.

She casually looked at my notes and without a care in the world said, Oh yes, I’ve got the results of the scan here, it’s nothing serious you’ve just got a bit of an infection.

Nothing serious you’ve just got a bit of an infection! – I have never been so glad to be told I’ve got an infection.

I had been convinced my cancer was back, was planning in my mind what happens next, had even spent the previous 2 weeks whilst waiting for my scan results doing all my Christmas shopping and was just told in a matter of fact way it was, “nothing serious you’ve just got a bit of an infection”

How long they had had my scan results back for I don’t know, I hate to think they had them for more than a week and not told me, just leaving me in limbo thinking I was dying.

None of this mattered though – her saying “nothing serious you’ve just got a bit of an infection” was enough and I broke down in relief.

Although I was still very poorly because of the infection I immediately felt 100% better despite being totally drained.

I went on to spend another week in hospital due to the intravenous anti-biotics I was on, but it was a really good week, I felt really positive spent more time out of my ward than any other time I had spent in hospital before

Story continues here – Will I be Home for Christmas 2018?

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