Nearly at the end of proton treatment.. 3 days to go

Lisa, first welcome back and second well done for getting through. We will all be ringing that bell with you on Wednesday.

You have had a pretty rotten time with Covid etc etc 

I too could not have managed without my NG tube and Coronavirus apart my symptoms were like yours with standard VMAT IMRT

Don't give up on the PBT just yet. Your acute reactions may well have been worse than your neighbours but that could simply be down to individual susceptibility but there may be bonuses with longer term side effects which are the ones that really can affect our quality of life.

So pleased they are letting you home and my very best wishes for your recovery

Keep in touch to let us know how you get on

Hi Lisa

good to hear from you. I wasn’t I’ll with chemo but my neck broke down  badly I was in polymem bandages for last 2 weeks of treatment and first 2 weeks of recovery. I too had n g tube from week 4 until week 3 recovery so you aren’t on your own. We are all different some  don’t react to radiotherapy  I didn’t react to chemo.

hope you are home on Wednesday and yes ring the hell out of that bell  then hone your rest and recuperate  here if you need us  

Hazel x

My word Lisa, you have certainly been through some challenges. Thank goodness Wednesday is within safe reach now!!

You sound like a really brave lady, better times are definitely in sight.

I am just starting week 3 so hopefully I will be ringing my bells very soon too xx

Thanks for the update Lisa.  It really does go to show how each individual body can react differently to the treatment.  We share similar side effects but not all to the same degree.

I'm excited for you for tomorrow!

All the best and take care.

Linda x 

Wow, what a journey you’ve had Lisa!  Thanks for sharing. And congratulations in advance on finishing your treatment tomorrow. 

I hope you ring that bell good and proper! 

Hi Nearly50 I was thinking of you just this morning and wondering how you were? Are you still around the community? 

Hiya,

So sorry everything's been quiet from my side. How are you?

Got to be honest, I've had lots of ups and downs but I'm hopefully turning a corner. My father in law sadly passed away too, quite suddenly from Alzheimer's so we've had a lot to organise within the family, inquest, funeral, finances etc to help my mother in law.

So back to the treatment and side effects ..ive just finished a 4 weeks course of fluconazole for oral thrush because Nystatin etc just didn't touch it. If it wasn't for this site I wouldn't have known to ask for this tablet so thank you so much. My mouth is still tender and highly sensitive to Flavours. I can't tolerate herbs, spices, pepper ..anything highly flavoured. I can't eat anything too tomatoey, chips, bread. Everything has to be smothered in a sauce (cheese sauce or gravy lol)  I can't have anything fizzy or alcohol too.

What I have managed though is soggy cornflakes or wheatabix with loads of warm milk, thin toast with tinned spaghetti, poached eggs, cottage pie, macaroni cheese (I virtually lived off this) spinache and ricotta cannelloni, yoghurt, lasagne, soup with buttered bread soaked in, cheese and onion pie, meat and potatoe pie. So still restricted but eating more than I could. The key for me is loads of sauce or gravy and a constant bottle of water. Oh I can also eat cheesecake and buttered teacakes and croissants if I dip them in my coffee as it really softens it up (acquired taste though lol).

Medication wise I'm on fentanyl patches, pregabalin (reducing this slowly), Lansoprazole and citalapran (been on that for years). I also still drink the fortisips and always have a bottle or two with me in case I can't eat anything which happens quite often. My necks still tender from the proton and I have to moisture it daily and wear factor 50. Luckily haven't needed to have the Ng tube put back in after removing it in July. The dry mouth is horrendous still. Ive got a steroid nasal spray, a salt water nasal spray. I personally found the prescription mouth gels better than the sprays. Still have lots of mucus and cough a lot. Would love a full night's sleep. Water is my best friend.

Sorry if everyone's fallen asleep lol.

If anyone is reading this, this is your journey. You will heal in your own time. I really felt I was failing because everyone seemed to be achieving more than me...but I've realised, that it's ok to take longer, it's not a race.

Love to you all XXX

Hi Lisa brill to hear from you. You’ll get there we all do like you say it’s not a race. I still can’t do spicy or alcohol but I can live with it. As for factor 50 it’s my standard routine just like brushing teeth do it regularly. 
sorry tk hear about your father in law no idea why it’s underlined everything sorry. 
take care and keep in touch 

hugs Hazel 

Hello Lisa. It's great to be hearing from you

I was looking at the programme for the Swallows Head and Neck Cancer conference in November and spotting a lecture on PBT thought instantly of you. Proton is heralded as less brutal intervention and I remembered how badly you had reacted and thought straightaway to get in touch. I'm so glad that you are getting through this and what you are managing to eat sounds fine. I bet you are glad to be free of all those monitoring tests too.

Have you had a post treatment scan and do they do one at a year as well?

So Pleased....so pleased and thanks for dropping by 

Proton Beam is a really interesting  form of radiotherapy.  The physics behind it is fascinating (as a physicist) and I can see why it can be so effective; especially in reducing collateral damage.  Hopefully it will become more readily available, but possibly as a second line of defence when traditional radiotherapy has been used and the cancer returns??

Sounds like it will be an interesting session.