3 months post treatment - eating problems, anxiety and the dreaded scan

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New member, and really wish I was aware of these forums sooner as they look a great place to share experiences and seek advice.

In March this year my world was turned upside down when, at the age of 48, I was diagnosed with HPV Head and Neck Cancer. For a few weeks prior to diagnosis I'd had problems with my mouth and was occasionally spitting up some blood. Initially dentist thought infection and gave anti-biotics. Then the following week my GP thought the same and changed anti-biotics. Only when I mentioned the blood did I get referred to ENT.

Straight away the Doctor wanted to take biopsy of my tonsil and the following week I received the bad news. The oncologist confirmed cancer in my tonsil and had also spread to my neck (I wasn't even aware of the big lump that was on it !) Whilst she said they didn't typically stage this type of cancer, it would be classed as Stage 4 - at that point my heart sunk.

30 blasts of radiotherapy and 2 loads of chemo was my treatment and - like many have said on here - it was absolutely brutal. Lost nearly 3 stone in weight over the period and had to spend the last week of treatment in the Western General in Edinburgh as had become too weak to stay at home.

Now 3 months since treatment ended and I'm due my scan in the next week. Looking for advice on the best way to cope with the anxiety of it all ? Every night I'm going to bed convinced it's going to be bad news and either more treatment awaits or even the Doctors telling me not to make plans for Christmas ! I'm naturally quite anxious anyway but it's absolutely through the roof now.

Eating too is a real chore. Swallowing still quite difficult so I need to eat a lot of saucy (mild !) or watery foods. Things like crisps, biscuits, bread etc are a big no no as they just turn to goo in my mouth and I can't swallow. My tongue is super-senstive to toothpaste too so brushing teeth is a real pain, and that's before I start on the toothache (dentist tell me a common symptom from dry mouth).

Physically I do feel well - apart from the mouth - and actually quite happy with my new weight. Haven't needed to use the feeding tube for a couple of months so I'm hoping if I get good news at my scan it can come out - got a holiday booked to Spain for next month and the thought of that is all that's keeping me smiling at the minute.

Apologies for the long winded post, and huge thanks to anybody and everybody who read it to the end !

  • Hi FifeFlyer75, welcome to the group and well done on finishing your treatment. Anxiety on this whole journey is an issue and it is so easy to say try and take your mind off it, which is very difficult to do. As for your scan, bear in mind the cure rate this treatment brings is very good approx 90%, there are many of us on here who are living proof of that. You're right eating is a chore, although it is best to try and eat as much as you can, try not to be too adventurous with food, soft foods like milk puddings with lots of cream to load up the calories, poached or scrambled eggs, anything that can go down easy. Any worries or questions just ask. Have a great holiday.

  • Thanks for the reply and welcome Slight smile

    Last week the dietician and the speech & language team discharged me, which gave me a huge boost, and her advice changed from the previous "calories, calories and more calories" to trying to eat healthy (something I was never particularly good at).

    Managing stuff like Spag Bol, chicken stir fry etc and the other day I decided I was going to eat a BK Whopper no matter what. Took 45 minutes to get through it lol and it was stone cold, but it tasted great even if it didn't do my mouth any favours.

    On the other hand, went out for a curry couple of weeks back and managed one mouthful and it was the mildest one they had on the menu !

    The oncologist did talk about the treatment being curative and gave me odds of "8 or 9 out of 10" which I guess is as good as any doctor would ever give. Naturally I focused immediately on being in the other 1 or 2 ! 

    Reading these forums now and seeing how amazingly well people are doing though has definitely lifted my spirits and I will go into next week's scan with a bit more confidence than I had before.

  • Hi Fifeflyer75

    Fab news you made it through treatment.Sounds like you are doing amazing already with food ,soft foods are good , soups custard trifles etc

    I went from a T2 to a T4Nb2MO 16+ by the time I received treatment after which I was one of 90%!
     Its very scary waiting for results and like old biker said easier said than done to feel anxious.

    Try and keep your anxious brain busy busy busy..do things you enjoy I watched anything and everything untill I finally fell asleep( sadly 5-6 am ) but it got me through.I still find I can’t read more than a few lines of text but hey ho.

    After effects of treatment can be hard to get used to, and I’ve only just managed to accept that’s how it is but keep thinking of how amazing you are to have got where you are today !

    Think of all the lovely things you will do on holiday Im leaving Portugal today with my friend a T3 survivor… stay hopeful x

    Debbie

  • Hi Fifeflyer 75 welcome to our small community I’m Hazel six years post treatment for Tonsil  cancer with seven affected lymph nodes. Best advise I can give you about your scan just your team HPV driven tumours respond extremely well to treatment. 
    There’s lots of others on here that proof that the treatment does work. You can’t take scan anxiety away from you. Just remember you come this far and the treatments does have an excellent success rate. as far as eating it is early days  for you you may not think so. Aim for six months is a good point to aim fir. 
    Currys etc can take time think soft foods for now. 

    you will have days where you go two steps forward and one step back. Youve found us now so ask any questions on here, fingers crossed for scan.  As I type, I’m sat on the ferry going to Spain for another long stay holiday if you have a look at my blog  below it I’ll show you what my progress was from day one

    Hazel

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now  6 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help

  • Hi FifeFlyer75,

    Just a short message to hopefully give you some solace. Everyone of our cancer journeys are individual, especially the psychological impact of diagnosis/treatment and after treatment. Alas I have found that getting any psychological help has had to be going to the private sector.

    Anyway, I went to the dentist Dec 23, told I had a lump in the roof of my mouth and going to be referred to the hospital. Imagine my surprise, and concer, I'd noticed nothing. Late Feb, diagnosed with HPV. Treatment plan was, to start middle of March, two chemo and 35 radio. It nearly broke me. Used a feeding tube for weeks. Couldn't even drink water. Treatment ended on the last day of April. 

    PET scan for results of treatment was Monday last week. Appointment with oncologist was last Thursday. Given the all clear. Showed me the scan, cancer was in a tonsil, and soft pallet of my mouth, about 4cm. It was all gone. Didn't have a tonsil removal. 

    Currently, my taste is coming back so so fast. I'm eating much more than ever. Feeding tube was taken out about 3 weeks after treatment, on my insistence. 

    I'm beginning to accept, with some counselling, that I'm not going to be able to eat some foods again, dry foods. I'm now eating some things I didn't think I would again, fajitas, sandwiches, washed down with tea or something. 

    My confidence was rock bottom, it's beginning to grow. Last Thursday after getting the all clear, I went to Wagamammas and ate out, that was a huge physical and physiological hurdle for me. 

    I can't really do spicy anything still, but it's a small price to pay. 

    It's OK to be nervous about the results of your scan, it's natural, I just hope my story is a little comfort for you. I'm wishing you all the luck in the world, although I don't think you will need luck. 

  • Thanks everybody for the kind messages and words of encouragement.

    These messages, along with reading the forum in general, are definitely giving me more optimism than I perhaps had even just a couple of days ago.

    I guess patience never been my strongest point, and I'm too busy clamouring for things to be "normal" before they really ought to be.

  • We are only human. We want to be " normal " ASAP. There is a new " normal ", which won't be so bad. And when I win the lottery and employ a chef to prepare me chefy type food with lots of yummy sauces, easy street.