My RT blog - a year on. A long post.

Hi all,

Greetings.  Its eighteen months from major surgery to remove the right half of my mandible and over a year on from radio and chemo.  I'd half forgotten some of the things I went through and something prompted me to look back at my WhatsApp group messages that I shared with frends and family at the time.  It was good then because of course everybody wants to know how you are and this was the best way to reach a lot of people all at once.

I've decided to share now as you do hear some of the negative things about treatment and there's no getting away from the brutaility of it, but you can and will get through it.  Each person's journey will be different. This was mine.

One day at a time, you win the race.

I'm so grateful to my wife and other family members who cared for my every need during this time.  Hold on to those you love.

Good luck to you all!

Graham x


RT day 1:

Sorted out concession car park ticket. Found out where to go. They have lots of RT machines at this hospital .

Short wait to be seen and then I'm in.

I was feeling a little anxious. They clamped the mask on my face and it was quite tight but ok. My mouth was quite dry, so breathing was a little difficult. I managed to slow my heart rate down and then I was ok.

10 minutes in the machine and then it was done.

No notable affects yet.

Early start for 6 hours chemotherapy then another dose of radiotherapy tomorrow.

Tired now. Early night.

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RT day 2 with added chemo yesterday.

Early start. M25 moving nicely.

Got into ward. Very quiet. Settled in armchair. Nice cup of tea waiting for canula. Lovely helpful staff. A prisoner in handcuffs was brought in to next area.

Had fluid drip for an hour, then two hours of the chemo drug cispplatin. Strange mentally knowing that you're being slowly poisoned.

I dozed on the chair before being called to radiotherapy. No waiting, straight into the machine. 

The mask was pretty tight but I just had to relax my breathing and zone out. I know that some people would struggle with this. It’s quite a mental battle.

10 minutes in the machine and it’s over.

It seems to make my tonge tingle afterwards, which so far is the only noticeable effect.

Two sessions down, 28 to go.

After radio, back to ward for another two hours drip to help kidneys.

M arrived and sat with me until drip was finished.

Back for RT today at lunchtime, then weekend off.

I have a bunch of different drugs to take to stop the chemo making me sick.

Another day. Xxx

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 RT day 3.

1:30 appointment. M25 was moving nicely. M dropped me at the door and then parked in car park.

I was in machine 7 today..  Operated by K and L. They were playing Ed Sheeran’s Thinking out loud as I was getting clamped onto the table, which was M and my first dance song.

It wasn't quite so tight today so I could relax and breathe more easily.

10 mins later and I'm out.

30 mins home.

The chemo from yesterday is starting to make me feel a bit sick. I have four medicines to counter act that.

3/30 sessions done now.

Tonge tingles again today. Rubbing skin with Aveeno cream to keep burn symptoms in check, although not seen that yet.

Little Red tablets to gargle with to stop mucositis.

Remembering what to do when!

Cheers all xxx

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RT Day 4:

Had the weekend off from the hospital, which was great for M too. The weekend was quite tough for me though as the nausea from the chemo wasn't pleasant. I need to keep my eating up to keep my weight at 95kg. This is so the mask fits correctly during treatment.

I have four different drugs to control the nausea and I guess they work well enough.

Back to hospital today for lunchtime appointment. Easy drive on m25.  Wasn't feeling too sick today but very dry mouth. This is expected but unpleasant. I have patches to reduce saliva but I might reduce the dose after speaking with consultant.

I was pretty relaxed getting onto the machine and the mask clamping down on my head. First part of the sequence is a CT scan and then the treatment starts. I did have to raise my hand halfway through as I couldn't swallow properly. So easy to panic but I managed to compose myself.

Definitely feel I've had a dose of energy today. Tongue feels sore and skin a bit sore. I have good painkillers and it's time to start them now.

Four down, twenty-six to go!

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RT day 5 and 6.

Feeling really terrible. Nausea comes and goes.  Completely exhausted. Horrible experience.

A fifth of the way through. Got to keep going.

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RT day 12:

Hi team. Last few days of last week I was very sick. The chemotherapy is horrible. I struggled to eat anything and was losing weight quickly. Vomited a few times too. Saturday and Sunday I started to feel a lot better. Started using my stomach RIG for feeding again and this really helped. Food is medicine after all.

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RT 9, 10 and 11 were not bad. Just feel sleepy afterwards. Mouth is getting quite sore now but pain killers helping.

Tuesday, we popped in for a catch up with my surgeon Mr F. He's such an amazing doctor. So thorough and really caring. I still have a swelling on my neck that collects fluid from time to time. For now, I just have to massage it out.

I'm having some thoughts about my second dose of chemotherapy and its side effects. It does seem to affect hearing. Got a meeting with speech and language today. Got a meeting with the oncology head and neck team on Monday. We should be able to discuss the risks then.

M is wonderful, driving me every day. Her sister will take me a few days to give M a break.

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Number 12/30 today at 5. Getting there!

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RT 13/30 today. My beard is starting to fall out. Mouth sore. Weekend off though. Nearly halfway.

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RT 14/30

In the waiting room for number 14 out of 30.

Just spoken with the oncologist and he's going to switch me from cispplatin to carboplatin for the second chemotherapy next week. We spoke about the risks and side effects of cispplatin in regard to hearing issues.  I'm quite a bit happier now.

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RT day 15.

Whoah-ho we’re halfway there!

15 down, 15 to go.

Going each day, I meet various patients and partners in the waiting room. Some are chatty, some grumpy. Each person has a story. Breast, rectal, eye, neck, prostate, it’s all happening.  The message: be happy with what you've got and look after yourselves and loved ones. Don't sweat the small stuff.

You're all amazing!

Love G xxx
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RT 18/30

Starting to look burnt

Quick in and out today

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RT day 21/30.

“It’s the final countdown".  Ten sessions to go. The mouth is sore but not as bad as I was expecting. Swallowing a little bit difficult. I have a tough set of exercises to do.

Chemotherapy tomorrow. Can't say I'm looking forward to that but with luck it will be my last ever chemo.

If my comms are intermittent it’s probably because I'm sleeping.

Cheers all!

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RT day 25/30.

It’s been busy this week. The machines have been a bit unreliable which has caused delays. It means I have time to chat in the waiting room with other patients. Always good to hear other's stories.

'Sue' is also having RT for a neck tumor. She had two doses of the first chemotherapy drug I had and her hearing has got worse  so I'm so pleased I switched to an alternative.

My mouth has got so dry and tight. Almost impossible to eat anything at the moment. I'm so glad I have the option of the stomach feeding.

Last few days of treatment!! Five sessions left now. That will be next Tuesday. The day after will be 100 days from my surgery. I think how each day has been different.

I've lost so much weight. 89kgs now. BMI is 26 so almost "ideal" range.

I am physically weak though. I tried and failed to do one press-up! Bloody hell!! A couple of years ago I was called out of the  audience onto a stage to 'compete' against someone and could with a few beers and overweight I managed around 12.

I tried carry our old band mixing desk upstairs yesterday and I had to do it one step at a time with both hands. Something I used to carry one handed to the car without breaking a sweat.

So, treatment nearly over and then recuperation begins. I've been playing some guitar but its amazing which muscles are aching that I didn't even think about before.

Cheers all xxx

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Tomorrow will be RT 29/30.

The last week has been pretty tough. Mouth very sore. Bad case of thrush  looks like dried up cottage cheese. The medicine for that is disgusting but seems to have started working.

I'm not feeling nauseous though, so chemo better in that respect. However the low level effects of generally feeling crap seem to be lasting longer. Definitely taking a hit on the immune system. Strange nosebleeds and similar. Bruising easily. All part of the known effects.

Had a good meeting with B on Friday. She is my speech and language therapist. She says you’re actually looking and doing well compared to others. After the last session on Tuesday, things might get worse for a week or two but then I will see improvements. Skin is burnt and sore but this will recover first. Then soreness and taste will improve. I have to work on my mouth to get it opening better.

We watched the Deborah James documentary and it all seemed familiar.

I'm made of strong stuff but I couldn't do this without the support from M. She's put up with me being  stubborn and grumpy. She's hugged me when I've cried and got angry with me being a driving examiner.  She needs a medal too!

Catch y'all soon.

G xxx

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RT FINAL DAY! 100 DAYS AFTER SURGERY.

Hi team.

Finally got here. Last session on the IMRT machine today. It was quick and uneventful. Hit home with the mask as you've seen.

Earlier, saw my surgeon Mr F for a check up.  We discussed what happens next after the physical side effects are repaired. The big question of course "has it worked"? Too early to tell now but in time, he will send me for a scan to see if there are any areas of concern. He errs on the cautious side, "you're not out if the woods yet" is one of his sayings. But that's for another day.

For now, rest, recuperate, build strength, sleep. Get well physical and get back to eating proper food.

Lots of paracetamol, morphine, anti-fungal drops and other stuff.

Waiting for an operation on my lower eye lid. They will pull it slightly to the side and stitch it to the bone so I can close it properly and it doesn't look drippy. This will be a massive improvement as the eye gets teary and blurry now.

Thanks for all your support.

Love Graham xxx