Useful tips

Hi , 

Your situation is very similar to my own. I’m 54 I was diagnosed T1N0M0 February 2018 & also had my tumour removed via surgery prior to treatment. My surgeon said we’re a bit of a rare breed apparently, only 6/100 AC patients are viable for surgery as an attempt for cure. My surgery achieved clear margins although there was only a 1mm clearance on a small part (4mm on the majority) & that is the cut off for treatment therefore after a consultation with my I was offered into the Plato Trial, 23 fractions of radiotherapy with mitomycin IV day 1 & capecitabine tablets twice daily each day of radiotherapy. 

Advice on getting through treatment? my advice would be just do what you need to do to get through, rest when you need to rest, the fatigue is a bit of a bugger!! Physical symptoms from the treatment are accumulative, they come on gradually & you’ll deal with them as they build, your radiotherapy/oncology team should supply you with creams & pain relief throughout, ask them if you need anything. Get some Epsom salts in, I found when my skin got a little sore a salt bath was incredibly soothing along with an antihistamine! I had radiation cystitis from the end of week 2 & kept a jug of water by the loo & using that took the sting out of it a bit & the portable bidets seem to be a popular choice for if going to the loo is painful although I bought one but didn’t use it! The way I looked at it was this was 5 weeks out of the rest of my life so I took a couple of months out, I returned to work 5/6 weeks post treatment & am 15 months post treatment with NED & am feeling well. 

I remember the feeling of dread going into treatment but the reality was easier to deal with than I anticipated & once you get going with your daily sessions it does pass quite quickly. Just listen to your body & don’t try & push yourself too hard your body will be going through a lot so you’ll need to rest to allow recovery. Please if there’s anything else you need to know just ask, we’re all in the same boat here & at all different stages of our journeys. 

Nicola

Hi Nicola, 

All your advice is most welcome and practical which was what I was hoping for. I am sure I will come back to you as I progress to ask for further assistance. It is really good to hear from someone who is through the treatment and out the other side.

You’re more than welcome , I found that practical advice when starting out on my treatment was what I needed.    At my first radiotherapy appointment I was provided with QV cream, it’s an aqueous type cream, & when the cystitis kicked in one of the radiotherapy girls suggested I wash with the cream also instead of using any body washes (even non-perfumed ones) it was excellent advice & I still only use this, I now have it on repeat prescription from my GP it keeps any new skin well moisturised.

As you’ve probably seen there’s many of us on here that have had excellent responses to this treatment & although short & sharp it is effective & many that have been staged much further on than us have had a complete response so as hard as it is right now try & stay positive. 

Nicola

I had a similar treatment plan and had a similar experience.

The most useful thing was plastic jug by the loo to wash my undercarriage and I also bought a pile of cheap cotton flannels to dry myself on, it’s not very nice using paper. I used each one once then washed them in a batch every couple of days.

The tiredness is a big deal, just cut back on what you need to do until you start feeling better. I probably had two weeks where I didn’t leave the house. I’m about a month past treatment end and am back to work and starting to go out socially.

What I didn’t expect was the friendly community of people in radiotherapy. Everyone has cancer so cancer is no big deal. It was so reassuring and refreshing. 

The thought of it all is much worse than the reality.

best wishes,

Hi, 

Thanks for getting back to me. The insights you have shared gives me hope that I too will be able to cope. It is the unknown and uncertainty which I am finding difficult. In an odd way I am pleased/relieved to start my treatment tomorrow as I can start to count off the days to when it's finished.

Thanks for the support

Hi 

Welcome to our site, it really is the best place to connect with people who really understand.

I to am based in London, I’m under Guys Cancer Centre. I was diagnosed in March 2018, stage 3b and am currently 16 months clear!

This treatment is very effective on its own. The fact that your cancer has been found early and you’ve had surgery, puts you in a really strong position. My cancer was advanced, I had no surgery and the chemo-radiation got rid of my tumor. Keep this in your mind as you progress through your treatment. 

Whilst the chemo-radiation is similar for us all, how we react is very individual. I’m sure you’ve already been warned about the possible side effects however, you won’t know how the treatment will effect you until you start. The treatment builds up gradually so for the first couple of weeks, you may not notice many changes. Its really towards the end of treatment and beyond that the side effects are at their worse.

In terms of practical tips right now I would advise the following:

• change your toilet roll to moist flushable wipes
• invest in some loose clothing, dark coloured/patterned baggy trousers. Maybe with an elasticated waist so you can get them down quick. The treatment affects the bowel and can cause urgency.
• get a decent sized bag to take to hospital so you can carry spare clothes, medication, magazines, books, wipes, snacks etc,
• as treatment progresses you may need to change your underwear, to short type briefs and you may need some tena lady type pads
• get yourself organised at home with prepared frozen meals lots of your favourite snacks and drinks.
• Soaking in the bath with Epsom salts can be soothing.
• If sitting becomes uncomfortable your hospital may provide you with a special cushion it not, I can provide you details of one to buy from Amazon.
• Slow down, rest and sleep as much as possible and accept all offers of help.

Your hospital will provide you with all the medication, pain control and creams the you will need. Treatment is very manageable, your medical team won’t want you to suffer.

This site is brilliant, come on here anytime you notice any changes and need any advise or re-assurance. There will always be someone who will reply to you. In addition, one to one peer support can be very beneficial. If you can find someone on here who is starting treatment at a similar time, you can connect and support each other through it. This is what I did with Nikki65. We started treatment on the same day and whilst we were staged differently, we supported each other through it, texting each other most days.

Good luck with your treatment. It will pass by quickly and before you know it, will be over and you’ll be concentrating on your recovery.

Take it one day at a time, don’t think about the future and remember everything is temporary, things will get better.

Sarah x

Hi smrichie5

Your practical advice is just what I was looking for and I am sure that I will be referring back to your advice as I progress. I am bowled over by the support from others on this site. A big thank you. 

I started my treatment today and feel I am now on my way. 

Please keep in touch.