I’m 3 weeks post treatment. This was my 6 week journey

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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!

  • YOu are amazing, Horus! Your attitude is inspirational, and this summary of your journey is going to help SO many other people. Thank you for taking the time to do this! May your spring continue to be healing and positive, and lead to a great summer.

    Suz

  • Thank you. This community was a God send before I started my treatment. I read as much as I could to be as prepared as I could be. 

    I wanted to share my story to help others on their own journeys. If it only helps one person, I’ll be happy
    David x

  • Hi David great to see you have such a positive attitude on your road to recovery. It’s such a scary time right at the start isn’t it? That’s because we just don’t know what is going to happen and your step by step diary is going to be so helpful to those just starting out. We don’t get that many gentlemen on here posting their experiences and I do believe they experience certain different side effects compared to us ladies but the impact on the skin is the same. You don’t have to deal with those wretched vagina dilators at least! Look forward to your next instalment with great anticipation. 

    Julie

  • Thank you so much for the diary .. I see my oncologist next week and I’m very frightened .. I have an anal cancer and 2 rare retrorectal cysts which cause constant pain … I’m trying to be positive , get the correct advice and after 6 months of first visiting gp , umpteen scans , 2 biopsies and plenty of tears , I’m ready to go 

    Best wishes 

    Chrissie 

  • Hi Christie, I wish you well with your visit to your oncologist. My very first visit I remember well. She sat and read out all the possible side effects from the treatment which made me feel like running from that room. When going through treatment I didn’t get half of those side effects and ones I did get were cumulative and manageable via creams and drugs.  

    Julie

  • Thanks Julie , It’s taken such a long time to get to next week , the fear , the lack of knowledge , the putting your life on hold !!!so pleased you people are helping me through it and not feeling like I’m the only one ..

    Take care 

    Chrissie xx

  • Hi, Julie. I’ve recently been diagnosed with anal cancer (haven’t started treatment yet) and I’ve certainly been learning a lot from this great site.  But this is the first reference I’ve seen for a vaginal dilator.  Whattt??!  Can you elaborate?

  • Thanks Julie. Appreciate your support and  comments. I hope it helps others. I’ve realised there’s lots I’ve forgotten to detail. The most important is the support of your partner and to remember to ‘check in’ regularly with them in regard to their own feelings. They’re going through it too in their own way and whilst my husband was ‘being strong and positive for me’ I didn’t ask him about his feelings as often as I should have.

    Anyway, thanks again for your response Julie.

    David 

  • Chrissie, you’re very welcome. I wish you well on your journey. Waiting for treatment to start was frustrating for me too but stay strong and positive and you’ll get through this too x

  • If you have radiotherapy,  the treatment can cause vaginal stenosis which is narrowing of the vagina. Following treatment they prescribed a set of dilatorys which you use to prevent or treat it so as to make things like sex and medical examinations more comfortable.