I've been diagnosed with Anal cancer

Hi Sass ,

Firstly welcome to the Macmillan online community although I’m really sorry that you find yourself here.

I had the same treatment regime as is in your plan, the mitomycin infusion on day 1 of treatment was over & done with in a few minutes, I was given a saline flush before the mitomycin went in & that’s what took more time to be honest. I was given anti-sickness meds to take from that infusion onwards but found that after taking the first pack that was prescribed I didn’t need them at all, the capecitabine tablets had little to no side effects for me, my hair went a little thinner although nobody else noticed & the combination of both treatments left me with fatigue which was by far the most prevalent side effect for me. I just rested when I needed to rest, I had a nana nap during the afternoon & early nights, it was some of the best sleep I’ve had since the kids came along & my eldest is 34!!  The skin reaction from the radiotherapy builds gradually & you’ll be supplied with lotions & potions to help with this as your treatment progresses.

I remember being terrified before treatment & my oncologist also gave me a list of possible side effects but followed that by saying he hoped I’d get through it with not much more than a sore bottom. He also told me that the oral chemo is much less harsh on your body than the infusions so try not to worry about it too much. Your bloods will be checked on a weekly basis just to check that your tolerating the chemo.

Like you & so many people here I too lost a lot of sleep between my diagnosis & beginning treatment, you have so, so much information to process is there any wonder that we find it difficult to switch our brains off long enough to get some decent sleep! 

Please don’t hesitate to ask if you have any other questions, nothing is too personal here it comes with the territory with a diagnosis such as ours! 

Nicola 

Sass, another welcome to the forum and I am so sorry to hear of your diagnosis.  However, you have come to the right place, we have all been through what you are going through right now.  Two years ago the fact that I had cancer was like a bell tolling in my head, for a long time it was all I could think about and I really didn't cope very well.  But life does get better, much better, and I can genuinely say that my life is happy - in a different way than it was before as I think a cancer diagnosis changes us all, but believe me there is life after cancer. 

Once your treatment starts you will feel a lot more in control and you will hopefully be in a less dark place than you are right now.  And if you feel you can't cope, don't hesitate in asking your GP for support, mine prescribed anti-depressants which eased the burden enormously (I was able to sleep).  As for practical advice, we have that by the bucketload!  An essential item for most of us on here was a Sitz bath (the very cheap version of a bidet, available on Amazon) that sits on your loo, filled with lukewarm water and used for pain relief and bowel movements too if you need too.  For some reason bowel movements are less painful under water.  

As Nicola says you will be told all the possible side effects, but have you ever read the leaflet that comes with a box of over-the-counter paracetamol?  I am not making light of what you have been told, I had severe side effects and I am happy to say and can honestly assure you my memory of those is that this was something that happened in the past, not here and now.

If you need support we are always here.

Irene xxx

HI Sass 

It's a scary time, isn't it? We want to be fully informed and be able to make sensible decisions, but being bombarded by all the awful things that COULD happen make it hard to stay balanced and serene.

Chemo's not much fun and the side effects CAN be awful, but for *most* of us *most* of the time we don't get hammered with all of them. I had very little nausea, and the anti-nausea measures the nurses gave me took care of it. My hair thinned a little, so I took the plunge and had my luscious locks shaved off and am rocking a crew cut. Now I like it so much I'm keeping it a while longer!

The radiation was harder for me, and I thought for a while during the difficult recovery period that day after day felt just the same and I would never get better. But danged if I didn't eventually slog through it and start rediscovering Life After Treatment. 

What's your support situation like? Do you have people who can drive you to your daily treatments, walk your dog, fetch your mail, fix you some food? This is a good time to start getting that component put together.

You guys, for the most part, seem to be blessed with amazing cancer nurses to support you. Take advantage of them to ask questions! And stock up on a few supplies (don't go nuts as you don't really know what will work for you yet.) But everyone needs a sitz bath or a bidet. Seriously. You will come to love them.

Keep coming back here- this place is hte BEST support!

Hugs

Suz

Hi , my dad finished 5x days 5 x a week chemoradiation.  He was fine for 4.5 weeks .  Now he is so fatigued he does nothing .  Went to bed at 4pm got up at 9pm to sit on sofa with head in hand.  He is very dizzy too.  This is 19 days later .  Should he be starting to feel a bit better.  He hardly eats or drinks despite us trying to make him.  He does NO exercise at all.  He is a man that doesn't discuss illness or things in depths and just gets on with things .  He left his symptoms for 18 months , hence the position he is in now.  He had bloods tested at doctors (As we called them) we were really surprised they were all normal ( sounds awful but we were kinda hoping they wouldn't be so there may be a simple solution to help him feel better , B12 , Iron etc) any advice or people own experiences would help.... I WISH YOU ALL WELL !!! such a terrible thing for everyone on here to be going through ..xxx 

VickiA, I am sorry your father is so fatigued, but it is very early days in his recovery, before my chemo/radiation treatment finished I was suffering from fatigue like I had never known before and for quite some time afterwards.  Also, if he is the sort of person that hasn't discussed what has happened to him, it could be that he is now only coming to terms with what has happened to him mentally and could be depressed.  He is blessed to have a caring daughter looking out for him, it must be difficult for you if he doesn't open up in any way.  If your GP and the team treating him are involved they will certainly be making all sorts of physical checks on him, but maybe, deep down, he needs to talk about it.

I am sorry I can't be more helpful, and thank you for your good wishes.

Irene xx

Hi Vicki, I'm not surprised that he's getting hammered with fatigue and fog at this point. It's so hard to say when anyone 'should' start feeling better. I know I was pretty put out to be 2 months out of treatment and still barely able to stagger through a day. You just don't want to eat when you know how difficult it's going to be on the other end. 

I'm so glad you're there for him. It's so important to feel supported and understood while you're sorting out what your body's been through and is still working on.

Hard on all of you. You're a good one.

Suz

Hi VickiA ,

Welcome to the Macmillan online community, I’m really sorry to hear that your dad is going through it right now.

This treatment can be tough in many ways, I didn’t suffer too many side effects throughout treatment until the very last day but the fatigue I suffered was by far the worst side effect for me. I’m used to being on the go most of the time but especially during the couple of weeks post treatment I literally couldn’t do more than move from bed to bath to sofa then back to bath then bed again! 

I agree with Irene that if your dad isn’t one to talk about illness etc., & especially if he let his pre-diagnosis symptoms slide for 18 months he’s probably processing everything & coming to terms with his diagnosis & all that’s come to pass since then. 

I would suggest if your dad isn’t eating/drinking maybe get him some meal replacement drinks & some hydration sachets, his GP, treating team or specialist nurse may be able to prescribe these, these will help give him all the essential vitamins, minerals & calories if he’s not got much of an appetite right now. Also if you think he may be showing signs of depression try & suggest he speaks with someone about the way this has affected him. Some people seem as though they’re coping well during treatment etc., but suddenly once it’s all over they begin to fall apart.

It’s good to know you’re there supporting your dad, hopefully you’ll see an improvement with him soon. 

Nicola

Hi Suz , thank you for replying , it's very reassuring to know this is all "normal" and there is light at the end of the tunnel.  

How are you doing now? 

Thank you Suz xxxxxxx 

Hi Nicola, 

Thank you very much for your advice it really is appreciated and I will definitely see if my dad will try the meal replacement drinks. 

How are you doing now? I hope you're OK ️.  

Thank you Nicola xxxxx 

Hi again VickiA , I’m doing well thank you for asking, it will be 5 years in June that I finished my treatment so I’m hoping that this will mean discharge for me. I’ve had a couple of longer term side effects from the treatment but they’re pretty minor & if this is the pay-off for good health then I’m happy with that. 

Please feel free to ask any questions you have here if you think we might be able to help. Also just in case you need some support from a personal viewpoint Macmillan also have a group on the community Family and friends forum where there’s support for family & friends of the person diagnosed, as we all know it’s not just the person diagnosed that is affected by cancer but there’s an impact on everyone around them especially close family. 

Nicola