Hi everybody!
First of all I wanted to thank all of you for sharing your personal experiences and your incredibly useful tips. I feel really bad because even though I have been reading all your comments I haven’t contributed yet.
Last July I was diagnosed with left tonsil cancer. I had to have 35 sessions of radiotherapy and I had to be fed through a peg until end of December. My radiotherapy finished at the end of September and I was so eager to be able to eat again….Unfortunately I had quite a few mouth ulcers and therefore even trying to drink some Fortisip was unbearable. Fortisip made me very unwell (diarrhoea) but it was the only thing that I could have. Having a PEG was far from being pleasant but it kept me alive !
When I was diagnosed my ENT specialist told me that the journey would be tough but worth it…..the journey has indeed been tough (probably the understatement of the century….) As soon as I started the sessions of radiotherapy, I felt as if I was part of a whirlwind . every morning was spent in hospital, the afternoons were spent sleeping . every weekend was spent being sick and sleeping or sometimes in A&E. Many times I thought my body would not do what my mind was telling it. I was very skinny when I started the treatment and I was losing more and more weight. Thank God I had a PEG as I would have ended up being hospitalised. Like many of you, I was also in so much pain, could not sleep at night ( was making a lot of girgling noises and had to sleep upright). Mid December, my mouth ulcers started easing up and I started managing to drink some Fortisip…nothing else but this was a huge step forward. I was so relieved to have my PEG taken out at the end of December ! Since January I have been trying to introduce a broader range of food. Still quite limited, very tricky as no saliva…and sometimes fluids come back up my nose….lovely ! I started with smooth porridge and scrambled eggs…I now can eat fish with a lot of cream sauce, mashed potatoes, bread/ brioche dipped in hot chocolate, pasta and melted cheese. This week I even had some smoked salmon with Philadelphia cheese…so yummy! I still cannot eat anything spicy but I have made my own version of curry using coconut milk and I try to be as creative as possible with what I can eat. To help my dry mouth during the day I use coconut oil, I find it better than some of the sprays I have been prescribed, plus it is good for your teeth ….I also have made my own mouth spray using water and glycerine as for some reason drinking cold water makes my mouth drier…Before going to sleep I now have some coconut oil, put loads of lip balm as my lips get so dry and I also massage my throat and neck with hemp oil. I know that there are so many things I still cannot eat but I am very positive, I focus on what I can eat and look at the other food thinking ….I cannot eat this …yet. I used to go out for meals often and even though I still cannot have a “standard” meal, I love being able to meet up with friends again and have a milkshake or an ice-cream with them. Life is a gift and being diagnosed with cancer makes you realise how important it is to enjoy small pleasures and try to find something positive about each day. During my treatment I started a diary and I stuck in all the cards and special messages my friends sent, reading them when things were really tough brought me sunshine. I have tried to keep my sense of humour throughout even if of course behind doors I shed many tears, I still wanted our home to be about life and hope. I will always remember when my younger son said to me “maman I am so proud of you , you keep smiling and I don’t know how you do it”. Frankly some days I did not know either !
I was of course so relieved to have been told in January that I was in remission, but weirdly enough I started feeling quite down and anxious, not being able to project myself and be so scared of tomorrow. At that point, it is very hard for those who love you to understand that you do not appear to be over the moon….of course I was but at the same time I was sooo scared. (still am…) I think this is when I understood how tough the journey had been. I realised though, that it was absolutely fine to feel like this. I would just need to try to find a way of making sense of it all and start a new life. To embark on my new life, I am progressively learning to be kinder to myself and listen to my body more and not feel guilty if I feel I need to have a nap, decide to have a long bubble bath or want to pick up my favourite book. I have learnt to be more patient with myself and learn to walk again instead of wanting to run. So hard for me as I used to be so busy all the time: single mum working full-time with loads of responsibilities, always looking after others. I know that I will not be able to have the same pace of life as before but I will do again what I love doing but at a pace that my body is happy with.
Of course there has been extremely difficult times and many very dark moments but if you have started your journey, please remember that there will be some light at the end of the tunnel and that you are not alone. Be kind to yourself. You are all so amazing!
Take care.
Fabienne
Hi Fabienne,
what a great post, I came on tonight as was feeling a bit low, I can so identify with your post it’s like I’d written it myself.
my experience is very similar to yours.
I was diagnosed with right tonsil cancer last January operated on feb, but one lymph node infected so started radiotherapy may, I finished about 6 weeks ago. I am experiencing all the same side effects as you, with eating, no saliva, I avoided the feeding tube but couldn’t drink the fortisips and Iv lost over 4 stone, which the hospital are not happy about. I’m still on pain relief and I wonder when this pain will ever go.
food tastes awful and I struggle to eat as I also have bad nausea and sickness. Reading your posts just reminds me I’m not alone going through this, I have exactly the same thoughts as you. Your post made me smile because I’m meeting 3 of my friends tomorrow and we going out to eat, at a place that do lovely ice creams and milkshakes 
keep up the positive vibes and il try do the same
Caroline x
Thank you Caroline. Enjoy your ice cream/ milkshake. 
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Ah that's a lovely uplifting post, Fabienne! Thank you and I know it will help many others at the start of their journey or during treatment.
Absolutely! Keep smiling - it really is important for you, not just those around you! I too have adapted to my body and my new 'limits' and I no longer try to push myself too hard. I think you're right, we don't know how strong we can be until something like cancer happens! People look at us and say we're so strong and positive, but hopefully they would be the same in our shoes, because it's the way through it all - one day at a time!
I'm 10 months post treatment (left tonsil hpv+) and my taste and saliva get better every week. I had a RIG fitted and was so glad to remove it too. Spice and chilli are not really my favourite thing anyway, but I do like a mild curry with lots of herbs and coconut !! I also eat less bread now, which is very good for my figure because I used to eat a lot and it always caused me to bloat anyway 
I saw my oncologist this morning for a routine checkup and all looks/feels well and he said that taste and saliva continues improving for 3 years. So I'm pretty happy with where I am now as I do get enjoyment from eating already.
For dry mouth at night I use Xylimelts (buy from Amazon) - they stick on your gum/tooth and work ok for me.
Keep on being positive and cherish the good things in life (and the food that tastes good!)
Take care, Helen x
