Newbie - just finished treatment

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Hi all,

Been following the discussions for some time but this is my first time posting, just wanted to share my experience of my treatment journey ( I know everyone's experience is different).

I was diagnosed with T2N1M0 HPV16+ tonsil cancer (right) in March 2024 (just a couple of weeks after my 40th birthday, I had been hoping for a wee holiday abroad as a surprise), got both my tonsils removed the middle of April and started chemo/radiotherapy start of June.

I had my 35th and last radiotherapy session on Friday and managed to cope with 6 rounds of chemotherapy (cisplatin) apparently I have been given the gold standard treatment (never been that successful at anything so to get gold makes me quite proud).

I think that I have been quite lucky with my treatment in terms of side effects (fingers crossed that continues) in that up until my final week I had been able to cope pain wise on 2 paracetamol before bed. I lost my sense of taste towards the end of my second week and around that time my mouth started getting very dry. My diet started changing and most foods became quite difficult to eat due to dry mouth and I slowly moved to a softer food intake. The gels and mouthwash definitely helped. My current diet is 3 2cal shakes a day with a pro-cal hit in each, Weetabix for breakfast with milk, potatoes and lots of gravy for dinner and custard and glass of milk for supper. The past week though my ulcers have got worse and the secretions are making me cough and gag alot (using mucodyne syrup which works) but all in all the worst thing I have experienced pain wise was getting my tonsils out. Chemo days were long but I found the most difficult part of it to be dealing with the effects of the steroids, I just couldn't sleep for a few days after.

My once glorious beard is no more due to the radiotherapy but it's a small hopefully temporary price to pay. It's now just the waiting game until my 12 week scan.

As I say, I know everyone's experience is different but just wanted to share my own to show people that not everyone will go through the worst of the side effects.

  • Hi and well done.  I agree with the tonsil pain!  At 5 months post treatment I am once again needing to shave my entire face so your beard may well return.  Just remember that the RT continues to build for 2 - 3 weeks post the last session; so expect to get a little worse but fingers cross it will not.

    Stay on here for tips and tricks when the recovery gets tough.  Remember this is now a marathon and there will be some backward steps on your journey to the new you, but you will get there.

    Peter
    See my profile for more details of my convoluted journey
  • Been following the discussions for some time but this is my first time posting,


    Hello and welcome.

    As I say, I know everyone's experience is different but just wanted to share my own to show people that not everyone will go through the worst of the side effects.


    First well done on getting through so well

    Second thank you for being so kind to let all the folk here know that this treatment is doable. Looking through you’ll see how frightened people are. I’m always counselling others that nobody gets all the side effects documented and many do very well indeed. You’re a case in point so thank you again. 

    I hope your recovery goes well. My advice is don’t rush and be kind to yourself 

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

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  • Thank you PFJTHS and Beesuit. I have been told that the next few weeks could get worse before I start seeing any improvements and am under no illusions that I am nowhere near the end of this journey but I must say that I have great support network of my wife, both our families and the incredible team at the cancer centre.

    I went into treatment expecting the worst and hoping for the best and have just been taking it day by day. Some days are harder than others and at times you do feel a bit sorry for yourself (and it's ok to feel like that) but then I remember why I am putting myself through this. 

    I have also been told by a few that as far as cancers go this is one of the better ones to get due to the excellent cure rates so I cling to that and put my faith in the medical professionals.

  • Hi ya,

    That's sounds promising that your treatment wasn't too problematic and your side effects were what everyone else suffered from.

    My treatment all kicks off on Wednesday, I'm not looking forward to it to say the least, but in order to getting rid of this demon I have to do this.

    Glad you have come out the other side and I hope that you continue getting better and get back to yourself. The journey is a long one. I had both my tonsils and adenoids out at the age of 14 I will nevSober forget the pain from it all ,it still haunts me to this day but I got through it. So yes I feel your pain. When I had my Panedoscopy and they took biopsies at the back of my throat and the areas where my tonsils were taken out that was painful too Sob

    Thanks for posting 

    Sarah

  • Thank you for sharing this. It's good to know that not everyone finds the treatment 'brutal'. My husband is in week 2 of 6 weeks of radiation with 1 round of chemotherapy (cisplatin) a week. So far it has all gone well. He has had two rounds of chemo with no problems. I know it is early days with the radiation and we are well prepared for all the possible side effects. In the mean time he is keeping positive and stories like this really help. 

    I hope your recovery goes just as well!

    Jane

     

  • Hi Jane. I'm at the beginning of what sounds like a similar plan. My wife did the Facebook Groups when I was diagnosed which I think scared her more than needed. I have one chemo and 2 radiotherapiss of a 6 week plan. Terrible nights "sleep" last night which I think was due to anti sickness medicine which I'm going to skip tonight. Original cancer was at base of tongue spreading to lymph node.

    Wishing you and hubby well

  • Hi  Jane 

    Well done for hubby getting through the first couple of weeks....not everyone gets hit with the nasty side effects....  some do miss the worst of the treatment nasties....hopefully your hubby will do this....keep the forum updated....plenty of tips and advice from patients and carers who walked the walk.

    Peter

  • Hi 62

    Best to stay away from Fbook and Google....stick with this forum all posts are very helpful and honest....posters have been there....done it....monitored by Macmillan.

    Anti sickness pills come with their own issues, hiccups are common and can be helped by sucking on ice cubes.

    Peter

  • Haha! I have was hiccuping for England yesterday! 

  • Haha! I have was hiccuping for England yesterday! 

    Hello

    welcome to our little group. 

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

    Community Champion badge