New diagnosis--lots of questions

Hey Poppydays2 

We can all appreciate the anxiety you are feeling - I was so scared when I started reading other people's experiences but I'm now in my third week after treatment.  I shared an update after each week of my treatment - an honest account BUT what's really important here is to remember that we are all different.

I'm a 52 female, I don't smoke or drink alcohol - I started treatment in the healthy weight range and I was swimming a mile 3 x times a week, plus getting my 10,000 steps in. My tumor was the size of a ten pence piece and attached to my internal sphincter. The cancer was also in my pelvic and groin lymph nodes.  HPV caused.

I have yet to experience bowel incontinence.  I have had some close calls... at one stage, think around week three, I'd have what I called "explosive poops" - I'd sit on the toilet and it was like my bowels immediately emptied.  I also, first thing in the morning - need to get to the loo with some urgency.  I am following a low fodmap diet which is helping immensely.  I did buy some tenna ladies and wore them when I felt most at risk however I never had an accident. 

Diet really does play a big role along with medications... For a few weeks towards the end of my treatment, I was taking morphine which meant I also took a stool softener to ensure I didn't get constipated - at this time I was living off toast, bananas and jelly babies...  

And the best advice I received, which I'd love to pass on, is:  deal with today's symptoms.  It's great to prepare for what's to come, get moisturising with coconut oil, buy the stiz bath and waterwipes - but try not to overthink symptoms you may never get.  

Hope that's helpful - this community is amazing so do lean on us. 

Best wishes 

Ali 

Thanks so much for sharing your experience! I'm one of those people who like to brace myself for the worst and then, if things are not as bad as I feared, feel grateful that my experience didn't live up to my fears. Not sure about this treatment though. Sounds like almost everyone says it is bit challenging while you are going through it. 

Would love to hear others' experiences as well. One of my fears (besides the really big ones of dying and incontinence) is that I will never be able to drink coffee (which I love!) and eat other types of gut-stimulating food again. That's probably small potatoes stuff, but food and drink are such a pleasure in life. Just trying to find out if some people can still enjoy these things after treatment.

Hi Poppydays2,

My answers are 1) No and 2) No. 

My diet (which goes heavy on veg, fruit and nuts: I'm a high volume eater) didn't change at all, and I didn't experience any changes in taste. I had very few issues with digestion, bar the need to take laxatives when on oromorph and codeine. I think I got a bit nauseous towards the end from the chemo but this was easily controlled with the drugs they gave me. I did as I was told and drank 2 litres of water every day in addition to tea, coffee etc. 

I kept expecting to experience that explosive diarrhoea they tell you about in the fourth/fifth week but it never happened to me.  

The only thing that didn't appeal to me at all during treatment was alcohol but six weeks after treatment and I'm drinking just as much as I used to: probably more than I should, but still, part of that is I'm still celebrating !

The information is overwhelming, it's important to focus on how you feel each day, and try not to worry too much about what might happen tomorrow. As they say, it might never happen anyway!

All the best, 

Mark 

Thanks for sharing your experience, Mark! This site is a godsend, although, to be honest, I was awake for hours last night reading every thread. Maybe I should take a little break for sanity's sake :)

Hi Poppydays2

Welcome to the club. Everything you are feeling is totally normal. I'm nearly 3 months post treatment and while it wasn't a walk in the park it wasn't as bad as I expected, we are all different and will react differently. I had a couple of accidents and I don't trust a trump yet although there has only been one that followed through, sorry if thats TMI. During treatment I had to cut veg as I got bad wind pain and lived on cheese and marmite on toast, my taste buds also changed but now I eat whatever I want and taste buds are coming back to normal. Sending hugs. Xx

Hello Poppydays2

A warm welcome to the forum although I am very sorry to hear of your diagnosis.  However, you have come to the right place and there are lots of people on here who have finished treatment and stayed around to help others.  The early days are so frightening and I am not surprised you are anxious.  You will read lots of details but please remember that not everyone gets the same symptoms.  There are many who have this treatment, (it is tough but doable), but is very effective at treating anal cancer.  The reality is that it is over a short period and hopefully they end up cancer-free and getting on with their lives.

The treatment did give me diarrhoea and I wore Tena pants just in case but didn't need them, although I became an excellent very short distance sprinter to the loo in spite of my side effects!

And not everyone gets the same symptoms after treatment either - I eat and drink what I want now, some had more problems with digestion afterwards and have had to change their diet, there is no hard and fast rule and unfortunately you won't know until you test the water after treatment ends.

Please come back and let us know your treatment plan, we have lots of tips and coping strategies we can share and we are always here to provide support should you need it.

Irene xx

Not TMI! The thing I love about this site is how frank people are. It really helps people like me who want to know EVERYTHING. I'm so happy you are eating whatever you want and your taste buds are coming back to normal!

Thanks for your kind words, Irene! The next ten days will be a whirlwind of appointments with the oncologists and getting my scan for staging. I wish I could speed it up just to know what's ahead, but the medical establishment doesn't move that fast. I will definitely keep you posted once I learn my treatment plan!

Hi Poppydays2,

A warm welcome to the forum although I’m sorry about your diagnosis and that you’ve had to join us.

It is a horrible and fearful place to be when you have just been diagnosed and don’t know what to expect. 

Please don’t think you’re going to become incontinent. It’s very unlikely. I certainly experienced ‘urgency’ in the later stages of treatment and whereas that has been ongoing it has definitely improved. I only had one accident although I appreciate that’s one too many!

You will learn what triggers it for you in terms of diet. 

You have come to the right place for information and support and don’t hesitate to reach out with any questions or worries. X

Thank you for your kind words! Pretty anxious about the scan but am trying to go for walks with loved ones to get my mind off of it. Distraction is key!