Last Update (21/05) - Ho Hum, Seconds out - Round 4!

Peter, tomorrow must be your last day. I hope things aren’t too bad and you’re being looked after and mollycoddled at home. It’s the best place to be. The next few weeks are pants so  ((HUGS)) 

I had not realised how long it was since I stopped updating my post!

The best thing that happened in the last weeks of my treatment was that they decided I did not need my last round of chemo as the daily scans showed good response to the treatment.  To say I was overjoyed was an understatement.  Although Carboplatin is less unpleasant than Cisplatin it is still pretty rough so I was glad I did not need the last session; especially as I now understood the response my body gave to it.

The last week of radiotherapy was really tough.  Each evening I could feel the effects crashing in on me, much more so than in the previous 5 weeks.

I managed to eat right through to the last day of radiotherapy.  It was tough but I made it there.  Having said that I knew I would not be able to swallow after that last session.  Fortunately the dietitians sorted me out with pump feed and I’ve been on that for 4 weeks now.  In the last few days I have gradually introduced soup, butter and bread (sic!!) and very milky Weetabix into my diet whilst reducing the PEG feed and supplementary Fortisips.  I have also restarted drinking tea.  I was able to swallow Fortisips and water through those weeks so have retained good swallow.

I really don’t recall much of the first 3 weeks post treatment.  I slept almost round the clock, only waking to take meds and hydration and start/manage the pump feeding.  It was my birthday on the day following treatment ending and although my boys came over I can’t remember any of it.

I still have some pretty impressive ulcers, now mainly on the right as that was where most of the bilateral treatment was targeted.  The forecast is another week to 10 days before they settle down.

I did manage to lose jaw opening after treatment ended.  I think I ended up with around 15mm at one stage, but have worked it back up to a measured 35mm (I started at 50mm).  A way to go before I can eat a burger once again!

One thing that took me by surprise was a large radiation burn appearing around 10 days after I was last zapped.  Fortunately it did not cause any problems due to use of E45 and Aloe Vera gel constantly throughout this process.

This week I’ve had appointments with SALT/dietitians and my doctor.  All are happy I am heading the right direction and keep reinforcing to me that I have managed this process better than most.  I found it really tough at the end.  I do feel for those where the issues kick in early and linger long afterwards.

PET/CT scan in mid May.  Hopefully the PEG out before then.  Onwards and upwards.

Hi Peter. Welcome back from the dark side of the moon as I likened that period. Kerp doing what you’re doing. The ulcers for me lasted around 3 month then went as quickly as they appeared. 
Its s tough time but everybody’s behind you . Everythjng x thst improvement s continue. 
Hazel x

Well done on getting through. I know what you mean about sleeping. I spent most of the first two weeks snuggled up on the sofa reading or watching tele and the rest in bed. It’s one step at a time now. Don’t rush and be kind to yourself. 

Well done Peter things can only get better from here on.  Just take your time and let your body heal.

Hi Mo. How are you? 

A bit like Peter sleeping a lot.  Had op on 9th Feb had to stay in a week as oxygen levels were low due to getting a chest infection.  But good news although confusing, they got it all in right lung with surgery so no chemo this time and it was a SCC non small cell totally different from the left lung which was neuroendocrine so i have had lung cancer twice 2 different types, throat cancer and multiple skin and facial scc's.  Was a bit of an experience on the ward, they constantly tried to give me the wrong meds if I wasnt on my game it could have been dangerous.  I told them that i got a bad reaction to dihydracodeine but they slipped some in and i ended up with a stomach ulcer and throwing up blood for the past 4 weeks also the steroids and antibiotics did not help this so now on omeprazole to try and settle it.  Honest I could write a book.  The equipment broke down so i was not getting my internal novacaine to enable coughing with a bad chest infection and they said i could only have paracetamol and one male nurse took away my oxygen.  Then I had 2 doctors spent al the next day trying to get my stats above 70%.  Anyway sorry Pete didnt mean to rant on your thread.

Take care love Mo xx

Good grief Mo! Im gobsmacked. Thank heavens you have a sense of humour. I’ll send you a huge hug and hope you get better soon. 

Hi no huge hugs from me as well. Xx

Well done Peter  it certainly is a rough treatment  , I didn't like Cisplatin and could only have four sessions , On carboplatin now lol All the Best Regards Minmax