This is where I am 3 weeks post treatment and I have detailed my
experiences from day 1 of treatment, 12 February 2024.
Diagnosis - anal cancer T2 N1a M0
This was my journey….
Your days will be ruled by your appt schedule, but the 6 weeks will truly feel like they’ve flown by once you complete your treatment. Have faith, take it a day at a time and accept you will have good days and not so good days
The PICC line was the best thing ever. I hate needles and finding veins can be challenging. Bloods were taken weekly to check blood counts were all OK and no blood transfusions required. Whilst the PICC line was in for x days insertion and removal were painless. Buy a limbo neoprene sleeve to help with showering. It proved a God send.
The chemo can which you are likely to have on weeks 1 & 5, Mon-Fri is challenging simply from the logistics of sleeping with it by your side and showering ( I slipped into a food bag with a double seal so I could still shower) and had it hanging around my neck for ease. The dressing is replaced weekly and flushed with saline and the can replaced mid week as it only lasts 48hrs. All straight forward and painless!
Radiotherapy. Get used to the routine. 30mins before treatment, empty your bladder and drink 450ml of water. The treatment itself took 2-3 minutes but about 20-30 minutes of preparation, aligning you on the machine and updating your scans/xrays. Painless process.
Get used to sleeping! I slept for England. It’s how the body repairs itself but if you’re able, get out into the fresh air, into your garden even briefly (walking can be quite painful after a while)
Diarrhoea - I had it for 2 days but had been given Loperamide which put an end to that.
Nausea - thankfully I had none but had been given anti sickness tablets just in case, which I didn’t need to take.
Hair loss - pubic area only. It all looked lovely and trim down there when it happened!
Creams & Potions. E45/Aveeno. Liberally apply, especially in the skin creases around your pelvis area/under carriage from day 1 of treatment. Post radiotherapy I was sore as if I had sunburn., skin started peeling away in small areas around my groin but I’d been given the real magical cream to help: flamigel followed by flamirol hydra and flamirol forte. This stuff really works!
Instillagel. Post bowel movement (this remained the really painful bit throughout) apply this to your anus - it comes in a syringe, which I squirted into a teacup and dabbed on a little with my finger (under advice from the team). It very briefly stings but numbs the area for 3-4 hours. Reapply as required
Bowel movements were typically twice daily- towards the end of treatment and for a couple of weeks afterwards, the ‘debris’ will start to appear. The tumour will break down and has only one way out. You might see it in your stools
if you have a daily inspection but nothing to panic about. It’s what you want after all.
Weekly review meetings. My team were incredible. Tell them exactly how you are, what pain you are in, so you get what you need to manage this.
Keep your own diary. Log your medication. How you’re feeling. Highs and Lows. You will see improvement as the weeks go by
Telling your family and friends. I kept this to a very small group initially as I wanted to manage this quietly and privately but post treatment felt
I wanted to tell a wider circle - without posting on Facebook or anything like that. You’ll know when the time is right for you but all have been so supportive to me. You realise how important family and friendships are.
Morphine - I’m off it now but had been taking doses ranging from 2.5ml to 7.5ml three to four times in a 24 hr period, again under advice and guidance.
Tablets. Lansaporole daily to protect your stomach.
Ibuprofen initially and then paracetamol every 4 hours in line with guidance.
Sundry purchases which might help:
Sitz bath - I used it twice. It didn’t add any value to me to be honest but many swear by it
A memory foam mattress protector £80. As I sleep on my side, this was and remains invaluable. The best purchase after the Limbo sleeve
Sanitary pads. Yep, that was a new one for me to get used to. Attached to my boxer shorts which gave total peace of mind and helped maintain hygiene
Diet - eat healthily as you can as towards the end of treatment your diet will need to be very beige for a few weeks. Low in fibre ie white rice, pasta and bread but Google what you can eat and plan your meals accordingly. At the time of writing I’m slowly re introducing fibre.
So that’s it I guess for now. My last day of treatment was on the first day of meteorological Spring (20/3)., a time of growth and rejuvenation. I feel strong and positive about the future and you will too.
Oh and use the Macmillan online community to gather as much information and support as you can. Everyone’s journey is different but being informed of others stories from the outset, helped me immensely
Next diary date is 8 May (7 weeks post
treatment with my oncologist). Wish me luck!
Thank you so much Horus64 for this account of your journey so far, posts like this are invaluable to those just starting out on this bumpy road! It’s already been said but I’ll repeat also that it’s great to hear from a male perspective too as there will be others out there that will have joined the forum but prefer not to post & reading your account will help immensely. May your recovery process be smooth & swift & sending positive thoughts your way for your appointment on the 8th of May.
Nicola
Hi Chrissie49 ,
As Julie has said regarding your oncologist appointment & discussions around treatment etc., try & keep in the back of your mind it’s part of their job to cover every eventuality, including worse case scenario, the likelihood is that you’ll feel totally overwhelmed following the appointment but remember the many of us here that are through the other side living a cancer free life again. I remember reading the possible side effects of the treatment & thinking I really do not want to do this but in reality I suffered probably 4 weeks of varying levels of discomfort & then I recovered pretty quickly & to say it was worth it to be cancer free is an understatement. Remember we’ve a mine of hints & tips here between us that we’ve learned along the way on our own journeys so please make good use of us & we’ll help however we can even if it’s just to offer a sympathetic ear. Wishing you the best of luck with your appointment next week.
Nicola
