Base of tongue biopsy... once home

I had a really horrid time with oral morphine and co codomol. I spent weeks  throwing up. I couldn’t do without it though

Hi Shab71, I have not experienced this, maybe pain patches would be better as it would hopefully replace the need for different painkillers, you could ask your consultant or one of his team for advice, I expect the funky feeling is just your tongue starting to recover. I agree your appetite will be much better once the pain is under control and you can control your vomiting. Wishing you all the best, take care.

                                                                                                                  Chris x

Thanks Chris, I'll get in touch with my team and ask for the patches, I didn't know they existed! I'm trying to be tough but without being able to keep anything down im feeling weaker by the day. Tiny bits of mint ice cream have helped. 

No one mentioned the swelling that kicks in by day 4, the foaminess in the throat post op, or the fact it's looking like 2 weeks recovery and not a few days :( x

Hi Shab71

morphine made me feel really really sick. After I came off it I gradually felt better.  Took a while though. I had to have lots anti sickness meds for a few weeks. All the best. 
lizzie

Shab71 said:

I'll get in touch with my team and ask for the patches, I didn't know they existed!

That’s a good idea. Opioids taken transdermally often have fewer side effects than orally. Good stuff Fentanyl. 

Hello Shab71,

I'm 2 months after my first base of tongue tumour excision & left neck dissection and  25 days after a re-resection to get clear margins on the base of my tongue. The first surgery I struggled with pain - I fully understand now the importance of keeping in front of the pain rather than waiting until you're in agony and then trying to deal with it. 

The second surgery although much less extensive has caused me a lot more problems. I think maybe because it was further down to the very root of my tongue & it has affected my throat a lot more. I had a very miserable time when three days after the surgery I started producing what seemed to be an endless flow of thick, sticky mucus, which combined with what felt like scabbing in my throat (it felt like sharp wallpaper hanging down) stopped me being able to swallow water, soup, liquid meds - anything without it going down the wrong way with a lot of choking, vomiting and spluttering. I prioritised the liquid pain meds and it took ages - don't know why so many meds were tablets - none of these I could take - even if I crushed them they burned my throat & came straight back up, 

When I did see the surgeon two weeks after the surgery he said it might be a reaction to Oxynorm so I stopped taking that & things improved within 24 hours. After the first op I'd been able to take tablets and had morphine sulphate with liquid oramoroh for breakthrough pain plus paracetamol snd ibuprofen. After the second surgery I was given paracetamol, naproxen (which I couldn't get down at all) and the liquid OxyNorm. Oramoroh had dried my mouth and tongue but I didn't get this horrible mucous-phlegm. I replaced Oxynorm with Codeine linctus from my GP. The surgeon also said I had an infection and gave me a liquid antibiotic. Within 3 days things were much better but 25 days after the surgery snd im still carrying a jug around with me because swallowing the mucous sets my throat off. I didn't eat for a week and struggled to hydrate - lost a stone and felt ghastly. Feel much better now but very tired & I now get acid reflux after pretty much anything I eat. 

The really good news is that the second op was successful in establishing clear margins and I am now cancer free and do not need to have chemo radiation. I have a physical exam with the surgeon on 10 March and a PET-CT scan a few weeks later. The oncologist explained to me that base of tongue tumours can be tricky so I know that the PET/CT scan is key in seeing if the surgery got everything. 

My neck is improving - the very uncomfortable neuropathic pain - an intense sunburn with electric shocks - has largely gone away. I have an ongoing problem with lymphadema & follow exercises given by the physio to try & mitigate that. Sometimes my neck feels fine - maybe a bit stiff. At other times it feels like I'm wearing a tight metal collar. I've recovered almost all movement in my shoulder over the past month so I'm hopeful that the spinal accessory nerve is mending itself & I may be lucky and recover some or all of the feeling in my currently completely numb left ear, cheek, jaw, neck and shoulder. 

It's been tough & at times it's been very grim but I keep telling myself this is a treatable, curable cancer & I'm very grateful for that. It's really helped to read posts here regularly to put what I've been going through into context with other people's experience and special thanks to those of you who come so often to share your experience and encouragement. 

I wasn't given a specialist  cancer nurse which has made my experience an (unnecessarily) isolated one. I called the McMillan line twice - once when I was faced with making a decision about a second op or chemo radiation which I didn't feel at all qualified to make and the second at the height of my very miserable week after the second op. Both times the kindness & confidence of the nurses was exactly what I needed. 

If I ever face more treatment I will make sure I get a specialist cancer nurse & if I have to go on to have chemo radiation I would ask for a peg - knowing how much suffering I went through because I was unable to take pain medication, to eat or to stay hydrated I feel this would make coping with treatment (even the thought of coping) much more manageable - especially as I live alone, 

Good luck with your recovery. 

Gosh sounds like you have been through the wars. I can sympathise with the swallowing and drinking . Omg what a major problem , That was the highlight of my day trying to swallow my medication before ending  up being admitted. Glad to see you are on the mend All the Best Regards Minmax 

Thanks - it certainly has t been easy. I wonder if surgeons have any idea how difficult it is to take meds orally when your throat has been ripped apart by a robot! 

Hi Wryneck,  thank you so much for all that info! I have also lost a much needed stone in a week... which upset me more knowing I'm still to face radio and chemo. My consultant says 2 weeks to start treatment but I'm going to try and delay things. I've had some anti sickness tablets and as days went on managed with paracetamol... once I got them in with toes curling I've managed a few tiny mouthfuls of bland blended food with copius not too cold water.

You've done amazingly well, having to make decisions like that must have been tough... so far I've been told! Mines no primary with lymph nodes affected, so they've taken back of tongue to 'make sure' and to see if the cells match. 

Not being able to eat so soon after this is worrying me. I'm already considering a peg if need be to just bypass the whole miserable experience again. 

You must be elated you don't need anything more than the ops, although I'm sure going through 2 was torture enough, you live and learn, im learning more each week re the process and what happens, im sure even having a nurse woukdnt have changed things maybe as im sure they assume you know more! This is a whole new world... for me learning what others have gone through just to try to survive has hit me hard... I had no idea really when someone said they had cancer x

Hi Lizzie,

I wished I known there was alternative meds before I started, I managed in hospital and skipped home... then 2 days later everything fell apart. At least I know now... especially re the patches as I'm sure there's tricky times ahead. 

I think sometimes the info you're given is very limited or they don't check if you're OK with meds and its trial and error... where you really don't want to be when in the thick of it! 

I felt tonnes better once off morphine, the spaced outness was horrid too x