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Recovering from Tonsil Cancer

julesey7
Posted by

To be honest I’ve hit a brick wall mentally, I wake up in so much pain every night. Throat so sore, mucus just there constantly but I can’t actually clear it now.

Im sick all the time so reluctant to eat anything now it’s pointless if im sick. I just can’t be bothered with all this anymore I don’t see any improvements apart from the external burns that have almost healed in nine days.

I just want my taste and appetite back. I was always a foodie eating out and cooking elaborate meals. I feel so punished but it all. I worry I’ll never get better. I feel so defeated but it’s been seven months of surgeries, needles, scans, treatment and now recovery I’m exhausted and miserable. I feel guilty for feeling like that! 

Kindest regards 
julsey 
REEVSEY
Posted by

Julesy 

Do not worry!! I’m now entering week nine after completing my treatment and I’m the same. I have moments of complete deflation and demoralisation. No one can say anything to make me feel better and yes, I’m struggling to swallow, at times my mouth is like cotton wool then it’s full of mucus and then I’m unable to talk..

I have felt desperate at times and by now I’d have thought that I could have eaten something but no. From 100kg I’ve hit a new weight low of 72kg and I honestly don’t know how the hell I’m going to put any weight back on.

The only thing we must hold onto is ‘time’ - I’ve been told that THREE months post treatment is a realistic period to wait before you start to see any turn or improvements. Try to stay focussed Jules, message on here as often as you like - remember, we are going through the same as you!

Regards - Reevesy

Reevsey
julesey7
Posted by

Weeks nine - that means I’ve got seven plus weeks even to get where you are and that’s not much different from where I am now!

They know this but don’t tell you, they know it gets 100 times worse before it gets better. I’m in a lot of pain tonight again and I’m horrible to be around! I’ve just been in bed all day because yesterday I over exerted myself. 

I really kidded myself and thought I’d be better in a couple of weeks hahahaha no chance. 

Its nice to chat to people that understand, my friends and family think I’ll be or should be better sooner and have unrealistic expectations of what I’m going through I think!

One has also booked me a spa wk end end Nov but I don’t think I’ll be able to make it. Especially if my sodding tubes still hanging around. 

I’m worried my weight will drop to a rediculous level. I’m about 60kg now. I’m trying to eat but can only manage soup.

Oh deal - I’m slipping into a kind of hopeless realisation that I’ve got alonggggg wayyyy to go! 

Wishing you a comfortable night! 

Kindest regards 
julsey 
REEVSEY
Posted by

Hey Julesey

Let me remind you to remedy that one of our fellow bloggers said not to get too hung up on what’s being said on these post boards! I’ve experienced one type of recovery and yours might take a turn for the better really soon so it’s goid to stay open minded.

The passion in your posts tells me that you are certainly very keen to ‘be well’ which is tremendous spirit. It will come and the pain and discomfort will slowly subside but I think you’re right - it’s all about kid steps and listening to your body. Please persevere with the PEG as I have (reluctantly) and I’m feeling better as a result of getting calories in, sure I’m not consuming the x9 Ensures my dietician told me too but every day I’m close, putting tepid water into my stomach at very regular intervals has helped me stay ‘loose’ with the help of Laxido sachets too. I’ve never experienced being constipated before having cancer and it’s horrific hence the water intake. I fill a pint glass with water and challenge myself to see how swiftly I can finish it and try to have been to three pints each day. In addition, I’ve set up a little feeding station on my kitchen work surface which stays there and that is another good visual cue to keep feeding!

I can’t eat or drink anything orally really but I’ve found that the litre bottle of Waitrose Banana or Strawberry flavour milkshake goes down well and one bottle is worth nearly 1000 calories! They are only about £1.50 - try it!!

Reevsey
julesey7
Posted by

Hello - I’ve not been on here for a while.....

Well I have made progress, I’m eating and not using tube, actually I’ve not really used tube.

Although eating is painful I just do it because I’m hungry and I have got 90% of my taste back and I’m heading into wk 6. I can actually enjoy a cup of tea. I took Zinc and have had two Accupunture sessions and it’s since then I’ve noticed improvements. 

I do have tiny clear blisters that sting in my mouth and a large radiation burn on the side of my tongue, I am still taking maximum pain killers. 

I also asked for my tube to be taken out and they removed it Friday just gone because I maintained my weight. They told me in the last five years there’s only been two patients with head and neck cancer that’s not used tube and I’m one of them. I just could not get on with it and when I wasn’t hungry or too sick I just didn’t eat. I always had a fear of becoming too reliant on it and loosing my swallow but that was being scared from what I had read online. 

Ive been quite busy and doing bits but I do get tired. The dry mouth set in last week and I’m coping with it but I hope it doesn’t last forever. But all in all I’m happy with my progress. I’m a determined individual and I think I rush things and get impatient. I’ve set myself a year to get better - I think that’s realistic?? 

Looking forward to Christmas now and enjoying a dinner without pain. That’s my aim. 

So how are you doing? Have you made progress - what week are you on now.? 

Jules 

Kindest regards 
julsey 
REEVSEY
Posted by

Hey Julesey

Funny thing these blogs. I’ve had a tough week this week and I know exactly why - the previous week I was on it with the bottles of Ensure doing 7 or 8 a day (when I should have 9) but as a result felt ‘normal’ ish. I clearly did too much then last weekend - crash! I think it’s taken most of the week to recover from that blip and it has been so frustrating.

Emotionally I’ve had a very tough week as I’ve clearly been wrapped up in my own bubble and it’s apparent that I’ve been distant from my wife/boys. I’ve tried to explain that it’s weird because you only find yourself thinking about ‘you’ and it’s tricky to fathom others into your life when you’re going through this beastly thing! I’ve started with a counsellor this week, totally independent and no medical background because I think I needed a soundboard. I’ve had a feeding pump and backpack delivered so I can now insert 500ml bottles during the day and regulate a feed over four hours rather than have to syringe etc. I’m getting the knowledge tomorrow so I’ll let you know how I get on.

Went to Costco today and watched my wife eat one of their hot dogs - it smelt and looked devine but I still can’t swallow properly at all. Looking forward this week to getting that Speech Therapy referral but there’s some really good basic techniques on YouTube!

i can remember week 7 Julesey and although it seems ages ago it isn’t really and you’ll be at week 12 (like me) in no time. I’ve shed some tears that all I’m doing right now is ‘existing’ from day to day but it is what it is - I’m so slender now I actually look like I’m ill if that sounds weird? I was 100kg and I’m now 70 which for a guy whose 6 feet tall means I look like rag and bones! It’s a vicious circle, we all need to eat to repair and rejuvenate our bodies/cells but when the body won’t let us (at the moment) because of the reasons discussed it’s tough.

This week is my MRI with the Contrast Comparison then I get to have that sit down chat on the 6th of November to see if we’ve abliterated it - fingers crossed. In the meantime we all just need to focus on the here and now and try to stay positive. Easy for us to say but yes, I’ve had a lot of feelings that those around me have no understanding of how your progress is going and their expectations are way off. Let them think what they think - if they see me they’ll soon realise I’ve got a long way to go, I think most of the comments are based on people wanting to compartmentalise our illness as it’s easier for them?

Anyway - have a good evening and remember, you’re now into week 8!!!!!

Regards

Reevesey 

Reevsey
julesey7
Posted by

It’s good that you persevere with the feeding, it might be easier now you have a pump to get what you need, syringing is hard work. 

I know what you mean regarding watching people eat, I can eat and I do it very fast before the excruciating pain kicks in, it’s not enjoyable but I do it and as I said I’m bloody hungry. 

I ate poached eggs yesterday and then a roast and a apple pie soaked in thick cream, I’ll weigh myself this week but I think my weight is ok around 65kg. 

Funny thing is I was in Costco the other day and I had the jacket potato with tuna. 

My swallow is sore, but I’m thankful I can swallow. I have my scan Dec but I’ve cancelled it till January because I just don’t want to know anything until after Christmas. I’m sure it’s been successful, well that’s what I’m telling myself. I try to block it all out but actually this is scary shit. I don’t get as anxious as I thought I would off and I have definitely handled this much better than I ever imagined. But the truth is no one understands what we’re are going through only we do. It’s evil. One day at a time - my saying is ‘this to shall pass’!

I’m very grateful as I know it all could of been so much worse. Children go through this with a smile. 

In regards to our kids - I constantly thought I’d rather it be me. I just couldn’t bare seeing a loved one going through what I have especially my son, so if I have to take it for the team, as they say so be it. I watch him doing as 20’year olds do and it gives me pleasure, he’s young and healthy - for that I feel blessed 

Im currently in bed - doing my test swallows to establish wether the pain is better than yesterday and build up the energy and inclination to get some pain meds down me, ready to start my day. I still rely on them as I made the mistake of thinking I didn’t need them a few weeks back - I was wrong! 

Constipaton well I feel like Fred flint stone! Hahaha work that one out 

Have a good day. Speak soon 

Kindest regards 
julsey 
julesey7
Posted by

......ps 

there some really goos meditation and hypnosis on utube that I did throughout my treatment. I don’t know if it’s yr thing but it really helped me. Especially in the ‘dark’ moments.

i used to ask to be left alone, plug my earphones in and drift off. 

Search for pain, healing or sleep hypnoses. There was one I did for chemotherapy at the time. Healing whilst you sleep is a good one. I’m positive it helped my fast recovery. 

Pain and healing might work bow for you. Worth a try anyway. 

Kindest regards 
julsey 
REEVSEY
Posted by

Hey All

I hope you’re all ok. Had my scan on Friday so sweating through the days until Tuesday night before seeing my consultant to establish how we’ve done. An extremely strange emotional situation to be in I can tell you, anyone else experiencing the same situation at the moment - I’m not quite sure what to do, say or think but its all very weird 

Reevesy

Reevsey
latchbrook
Posted by

Hi

I'm not sure if you realise but you've posted this in New to the Site so the other members of the head and neck cancer group won't see it. If you're not sure how to get back to the group just click on the link I've created.

Best wishes x

 "Never regret a day in your life, good days give you happiness, bad days give you experience"

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julesey7
Posted by

I’ll be honest, I find this site very hard to navigate! 

Kindest regards 
julsey 
Bodach
Posted by

I'm so sorry you are having trouble navigating the site if you would like to tell us more about what you are try to access and do we can provide you with links to take you directly to the area you want to be in.

We are here to help and support you at all times.

Ian

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julesey7
Posted by

Oh dear - no I just get a bit lost because im using an iPhone, I'm sure it’s much more user friendly if i were to use my laptop. I get there in the end not a major issue. Thanks for yr very fast reply. 

Kindest regards 
julsey 
Bodach
Posted by

No problem we have members and champions all using different devices and can help you. The site should be user friendly no matter what device is being used. Please don't hesitate to ask any questions you may have.

If you have a specify question would maybe suggest you start a new discussion and we can get to you quicker that way.

Please do ask anything you want.

Regards 

Ian

 for information 

With a Stma Care and Management Certificate 

My Groups ● St●ma Support ● Bowel ● Carers ● Anal ● Family & Friends ● Bereavement ● Diagnosed at a Young Age ● Parents of Young Children ● New to the Community

You can call The Macmillan Support line on 0808 808 0000 every day 8am to 8pm

What is a Community Champion?

 How to update your PROFILE

The Bodach is LIVING WITH A ST● MA

Jess-Macmillan
Posted by

Hi ,

I hope you don't mind me popping on here but our Community Champion  explained that you were having trouble navigating round the site. 

The Community can be accessed on all devices and can take some time getting used to at first.

If you would like to tell me more about the navigation issues you are facing please contact community@macmillan.org.uk and I'll be more than happy to help you with this. 

Kind regards,

Jess

Macmillan Online Community Team

community@macmillan.org.uk