Month: July 2020

18-Green shoots…

30 June 2020

Just finished the first two weeks post-treatment. What a trip! No surprises though, others had told me these could be the worst and they were pretty much spot-on.

The first week post treatment was awful – the neck burns had worsened and involved a trip to the local A&E along with almost daily attention by nurses.

My neck is unfortunately a difficult area to dress burns. Even though I’ve lost over 20kg, I still have more chins than a Hong Kong phone directory, so this did at first challenge the nurses. It took an unexpected trip back to see the radiologists at Cheltenham, where they had the perfect answer.

The pink coloured dressing is called Polymem and is a very sophisticated product. Read more about it here

The worst parts of the burns were additionally treated with Intrasite Gel and morphine mixture. This gave additional topical pain relief, exactly where required.

Within 10 days, the results have been amazing and to all intents and purposes completely healed. There is long-term damage to the skin though. I must moisturise this area twice a day – forever. Also, sunblock factor 50 must be applied whenever exposed to sun. Again forever.

I won’t dwell on the remainder of that week, suffice to say I never want a repeat. Finally, this last week of June has seen the first green shoots of recovery.

My voice is coming back bit by bit, although still squeaky. The coughing and thick mucus is still there 24/7. I’ve been tentatively trying to eat, although the burns in my mouth make for a quite unpleasant experience. And that is still really painful, even considering the morphine dose I’m on.

First thing I tried was some Manuka Honey from New Zealand (thanks Gill). Difficult for me, although Samros and Nisa love it.

A soft-boiled egg did go down, but that was a lot of effort. So I’ve decided to wait a week or so, before attempting solids again. I’m in no rush. I have my liquid nutrition feeds 4 or 5 times a day, giving 1200-1500 calories total.

So, all in all a very slight improvement day by day, but I’m pleased with that and hopefully the worst is over.

It won’t just be over for me though.

I receive so many best wishes and notes of bravery – and they’re all sincerely appreciated. But as is said – behind every man is a great woman and there’s no truer case than mine.

Samros has been an absolute pillar of strength. And I don’t say that lightly.

This is a woman that is not only grieving the loss of her mother in mid-April and of course, because of covid-19 not able to travel to Cambodia for her funeral, but also coming to terms with a husband stricken with stage 3 cancer.

I guess I’m fortunate that because of the lockdowns and shutdowns, Samros is on furlough and therefore she’s been taking care of me continuously, day and night. I can see the pain in her face as she sees the pain in mine.

I’m now in my 3rd week of sleeping sat upright on the sofa. It helps alleviate coughing due to the mucus. So Samros now sleeps on the lounge floor alongside me. If I wake with say, coughing - she’s immediately awake too. Ready to get me a sip of water, add some more medicines through my PEG or just to comfort me.

I try not to show the pain and we laugh off as much as we can. This humour has been one of our great strengths in the 7 years we’ve known each other. So the little in-jokes, the smiles, glances, touches and a lot of ‘ I love you’s ‘ are for sure been the best medicine I could have.

My next scheduled meeting with doctors is on 7th July. This is the first of monthly check-ups that I understand will be for the next 5 years. I won’t have any definitive answer about the tumour or prognosis for a few months, while we wait for all the radiology to settle down.

So in line with these meetings – and unless there’s anything significant to write about in-between (eating a decent plate of anything comes to mind), I’ll update the blog monthly after the doctor meetings.

In the meantime, if I could just convince Samros to buy a nurses uniform, that would be the ultimate aid to recovery 😉

19-On the right track

13th July 2020

Sorry to be mixing metaphors – from boxing ring to motor racing (or horse racing?), but I’m really pleased to feel I’m on the right track to recovery.

I had the first of my monthly meetings – post treatment, with the ENT team. We discussed how I’m feeling – and they definitely caught me on the best day so far.

My voice is getting stronger and is good for 15 mins or so of conversation, before it weakens. I guess many people would prefer that to be permanent 😉

Still only managing a tiny amount of solids and liquids by mouth, but the team are pleased I’m trying different textures of foods, to see if any work.

My taste buds are effective perhaps 5%, in that I can barely taste anything – but the they seem to work well for things I should enjoy, but now taste awful. Goodies such as marmalade, chocolate and trifles unfortunately fall in this category.

So I’m still with Ms Peggy the PEG for my feeds and medications. I still need the morphine for the left side of my mouth, which continues to be extremely painful.

The thick mucus is subsiding – and that’s a real blessing. In some respects, it’s the worst of all the side effects from the radiology treatment.

The physical examination was good – I had the scope thingy put up my nose again. Not painful at all, but it does make me want to sneeze! Anyway, the doc said things look very good and there didn’t appear to be any sign of Larry the Lump.

We’ll know better about that in September, when I’ll have a full scan.

But for now – I feel I’m definitely on the right track to a knock out.

Also…

I’ve just started preparing some fundraising for Macmillan Cancer Support

This is going to be by way of their annual ‘Worlds Biggest Coffee Morning’ to be held on 25th September 2020. Here’s a promo video of how anyone can host a local event.

Of course – Wozzer has to be different. So I’m hosting a ‘virtual’ coffee morning, with friends, family and of course my wonderful blog subscribers around the world.

I’m planning to combine Zoom Video Meeting and share a meetings link, so that we can see and speak. Timezones won’t be an issue – I’ll do my best to meet you for a coffee, wherever you are in the world.

I’ll update my blog with more details and times as we get closer to the day, but for now there’s some information with an RSVP link here