Wk 5

Hi everyone.

Hope everyone is proceeding on their journeys through this new world we all find ourselves in. 

We have just competed week 5. right tonsil and lymph nodes..I'm unsure as to exact terminology. It is p16.

Anyway, Hubby is doing well and from what I've read is having one of the easier journeys, if there is such a thing. 

His pain levels are steadily going up (after the jump at the end of week 3) but he says the liquid paracetamol alternated with ibuprofen is managing the pain. He uses his mouth spray in the night if he wakes in pain.

He says the difflam is a blessing and swares by it.  Uses 4/5 x a day, cleans his teeth.  He had a few mouth ulcers end of week 2 but they seem to have gone. (We got some gel for them which helped. ) so far no thrush. 

Weight has been caped at 0.3kg loss this week which is fab. The Peg has allowed 2,400 calories a day via protein shakes.  He just keeps swallowing small amounts of water and is managing to still swallow his meds. 

He has had 5 sessions of chemo.  His constipation has been incredible really. Not impacted but movement is very slow. The team have tried everything. He has problems without chemo so it was always going to be an issue. .  With the meds and laxido (2.5l water a day) we are managing.

This constipation along with the apparent optimum 200mg reached (40mg x5 sessions) of chemo the oncologist has suggested he leaves the last 6th session. 

Rightly or wrongly (please check with your oncologist) we made an decision after week one to spread the 12 steroids tablets given at each chemo session over each following week. The down after those first 3 days wasn't good . 

So instead of 3 days of 4 tablets.. which resulted in two really down days before the next session.  We initially did 4 days of 3 tablets = less down, not as severe. 

Then weeks 3/4and 5 we did 2 days of 3 tablets and 3 days of 2 tablets. They are for anti inflammatory... this just gave a smoother week and less of a big down.. this last week we've done 3 days of 2x tablets and now 6 days of 1 tablet to ween him off them. Again please check with your oncologist/chemo team.

Sleep is good, weight loss is now 5kg.. we were told to expect at least a stone. I am the perfect NAG... I keep a food diary and now monitor daily both calories and fluid intake.  And I do NAG as hubby isn't always wanting more fluid inside of his stomack... we did agree at the beginning that fluid intake and calories are the none negociables. Don't get me wrong we have had the odd day when calories fell to 1.500 and 1L water due to unwell and excess tiredness. But we just got back on track the next day.

 Skin is good, redness around the neck area with jaw line.  No sign of blistering, using aloe vera (check with your oncologist) and the thick white cream the hospital supplied.  Applied asa he is out of hospital in the car and several times a day.  Our rt team said it was ok as long as it had been fully absorbed before each daily rt session.  They also said NO suncream during treatment.   It is a metallic barrier and interferes with RT. 

Very little phlegm and dryness is not bad.  I can only think because its RT is on hubby's right tonsil, right lymph nodes and lower level to left lymph nodes and not tongue that his saliva is less effected but im just surmising.. this may change of course. 

One more week of our 3 hr round trip to RT at Preston.  The staff have been amazing and everyone is always happy to help with meds advise so just keep your team informed they will have knowledge of everything you are going through. 

Once again thank you to everyone who shares what they are experiencing it helps more than you know.  Just reading what others have done and tried. It's also not feeling alone in the dark but apart of something bigger. Especially as a carer who is often feeling helpless on the side lines so to speak, finding this forum was without doubt the point at which i felt we can do this. Made an incredible difference to me personally and inturn my husband too.  As his wing women he needed me as strong and as positive as possible. 

Sorry its a huge waffle episode but it's in hope it may help someone else on their journey. 

Wishing everyone continued progress towards restored health.  

Gail...xx