Hi Laura,

Thats a lot to cope with for you and heart goes out to you.
RIG sounds a bit of a nightmare but glad now sorted. Never had one so cant really comment but might have benefited from one with hindsight, but shame you had to go through that trying to get changed.

Good news that the consultant happy with Mick and long may it continue.

Keep as positive as you can I keep talking about the light at the end of the tunnel and the fact it exists.

Hope Mick continues well in recovery and please keep us posted on progress.

Onwards & Upwards
Ian
 

Evening  you lovely lot . I thought I would give an update on Chris as today was day 19/33 so over halfway woo! 

I went with him today as Thursday is doctor, dieticians& speech therapy day. 

No wight loss probably due to all the mash and semolina I am forcing him to eat .

very sore red neck with blisters - given a new cream gel.

lost his voice this morning he was unhappy about that came back a little this evening but hoarse was told to drink more fluids to keep throat moist .

Speech therapist happy  .

Pain in throat becoming worse but he loathes to take  pain killers but has been told he must take them regularly and don’t fight the pain . He was given morphine to have during the night when it’s at its worst as it will work quicker than the regular co codamol .

Doc was happy with him and is as good as can be expected but it could become worse over the next days! 

Must say everyone in the hospital are absolutely wonderful . We are so lucky to have the NHS .  Kind regards Ginny x 

Hi Ginny

Good to know things are going ok for you and Chris at this point in the treatment. Hazel is definitely right re the pain relief - you get no medals for suffering so if he needs them then take them . Paul had fentanyl patches at the end as the oramorph exacerbated his nausea. Night times are definitely the worst so make sure he takes enough to get him through. He wont get addicted and he’ll be able to slowly wean off them at the end.

As for weight loss hes doing well but the main weightloss seems to come at the end. Paul lost 3 1/2 stone despite having a RIG and feed pump and he lost most weight during the last 2 weeks of treatment and the 2 weeks after. Whilst he can eat then get as many calories into him as you can. 

Hazel is also right that the hardest time is when the treatment finishes and as she says you are cast adrift - no more daily contact to help alleviate your fears and ask questions of the medics but we’re here to help if you need us. 

Wishing you loads of luck and best wishes

Emma xx

Hi Ginny

My husband finished his treatment - 30 radiotherapy/weekly chemo 6 weeks ago.  One thing he found made a significant difference was doing the swallowing exercises - the pain seemed to appear overnight at the 2 1/2 week stage but getting going with the exercises reduced it a lot - something that the others we met in the hospital also found.  It also helped with keeping eating going despite the chemo nausea which really hit him hard.  His RIG tube was removed today, a great landmark in the process along with a tearful reunion with a fresh tomato yesterday!  

He worked really hard to keep his weight up especially at the end of the treatment - necking the prescription feeds in one go - the importance of weight was something that although our team emphasised it, the shared experiences here have made it more real - thank you to you all! 

Keep crossing the days off - 14 more to go, soon be in single figures!!

Hi Ginny

Nice to hear, by and large, all going well.

Agree with Hazel re painkillers and they are there for a solution and its only temporary and no need to suffer unecessarily when there is a solution prescribed by medical teams,

To put into perspective, at my peak I was on morphine MST tablets and 20mg in morning and 20mg at night then topped up by 10mg oral morphine as and when required. Basically morphine in system 24 hrs a day..In addition was on paracetamol 4 times a day.
Co codamol + 2.5ml morphine doesnt sound very much to me, but agree some manage on a lot less. I'm not medically qualified but I was told both by my medical team and my GP that I shoudnt mix and take  co codamiol and morphine together. I guess the trick is whatever works, dose wise, to alleviate pain but might be worth mentioning taking together.
On weight loss, I have posted many times on here my struggle with appetite and fatigue and lost 3 and half stone recovery period and in short space of time. I'm on action plan and supplements even now. I have also posted a detailed explanation a few posts ago that detailed a little more insight from my medical suppport team.

Please keep us posted on progress and hope continues positively.

Onwards & Upwards
Ian

Hi J4

Great stuff and sounds really positive. Agree re swallowing exercies as great emphasis was given by my Speech Thearapist over this and advised the benefits during and after treatment if done regualrily so well done.
Again good advice re keeping on the weight and thats great weight seems stabalised and ok.
 

Really positive post and sounds like doing really well. Great to hear positives.

Please keep us posted with progress.

Onwards & Upwards
Ian

Hi Ginny good to hear Chris is doing well, I can only back up what the others have said re pain my team said dont put up with it and take the meds offered.

Dave 

Hi

That sounds like a lot of pain relief. I would check with a Dr over the co-codamol and paracetamol? As it sounds as though you are overdosing on paracetamol, as co-codamol contains paracetamol.

Regards

Hi Diann

Just to clarify my response to Ginny, if indeed response was regarding my own pain relief.

I was on a lot of pain relief but never mixing  co codomol and morphine/paracetamol and hence my advice to perhaps mention to team. Paracetamol and morphine is fine but accoring to my medical team and GP, you should not take co codomol and morphine together due to side effects.
All my pain relief was stictly monitored and controlled and was gentlly introduced, upped, then gradually reduced again.

Regards

Ian

I understood your pain medication Anchor . I know it’s strictly monitored. She told us yesterday that they worry about the paracetamols effects on the liver ! She also said pain medication is modified throughout treatment . I am sure Dinn was just as shocked as me when I read all the medication you had had . But I understood to be throughout  your treatment and not all together ... blimey you would be as sick as a dog ! X x Ginny 

Apologies if I’m jumping in on someone’s post but I can’t work out how to start a new one!

Myhusband has just been diagnosed with cancer of the tonsils with spread to his lymph nodes, still awaiting final histology and consultant/oncologist apt for confirmation and grading. 

However we’ve been warned to expect 7weeksof chemo/radio and possible neck dissection at the end of it. My question of why not removed the lymph nodes first was dismissed without answer. 

I’d really appreciate hearing others experiences before we meet with them again next week. 

Thanks all

Jo

Hi Jo .... welcome to this lovely chat room . I can’t tell you specifically the answer to your question as my husband has the cancer just in his larynx with no spread so he is just having the 33 radiotherapy sessions . But what I do know is he has befriended someone having treatment with him who has tonsil and lymph . His treatment is like your husbands Chemo 3 I think and 30 radiotherapy sessions . I can see the lump in his neck so I’m guessing his wasn’t removed either . I am sure someone in this group will be able to answer your question better . Keep in touch with us . I have found this group fantastic & I am like you the better half ! Ginny x x  Ps you can’t start a new thread in the individual chat rooms well I can’t find a way so I always jump in on another too ! X 

Hi Jo .... welcome to this lovely chat room . I can’t tell you specifically the answer to your question as my husband has the cancer just in his larynx with no spread so he is just having the 33 radiotherapy sessions . But what I do know is he has befriended someone having treatment with him who has tonsil and lymph . His treatment is like your husbands Chemo 3 I think and 30 radiotherapy sessions . I can see the lump in his neck so I’m guessing his wasn’t removed either . I am sure someone in this group will be able to answer your question better . Keep in touch with us . I have found this group fantastic & I am like you the better half ! Ginny x x  Ps you can’t start a new thread in the individual chat rooms well I can’t find a way so I always jump in on another too ! X 

Hi Ginny it’s the weekend how’s  hubby doing  ,e joy the 2  days off. How is p is his neck now ? 

H x

Hazel . Was just thinking about you . 35 radiotherapy sessions blimey I don’t know how you did it . Chris seems fine tonight neck burnt as you know and voice is hoarse bit he is in good spirits . Yey for the weekend but for some reason he feels worse when he doesn’t have treatment . Sunday’s always feels worse than fridays so to speak . Oh well no 20 under his belt now . Have a lovely weekend and thanks for being so supportive to us all . Patients & carers you are very kind . X x 

Hi thank you for kind words ,it’s my way if giving something back if any help comes from my replying I feel like the treatment was worth it if I can pass my experiences on all the better. I was ok on the weekends maybe as itbwas sunpmmee I used to sit outside unseen the gazebo doing nit a lot if I remember rightly ..lol. 

Hubby no longer allows me that luxury today biked 38 km in 23 degree heat plenty if factor 50 on my neck and lots if water with me. Will be here on forum as long as people are asking questions

night offvto bed as the beach is calling in the morning one week left before we sail home m then hime 3 weeks then family holiday in Wales ,then home 3 weeks and we’ve booked a cheeky trip back out here making up for last year  which was a blur as yiu will understand

h x 

Hi Ginny

Good to hear that Chris is doing ok and you’re getting through it taking it day by day. Paul always felt worse at the weekend - he took steroids following the chemo until the thursday then as they wore off on the friday he sort of fell off a cliff and then would just sleep all weekend then it started all over again on the monday. I have to say the weekends were quite lonely as he was asleep or in bed but I was too scared to go out and leave him alone. 

Keep up the good work - you’ll soon be through it and sending best wishes 

Emma xx