3 days from finishing treatment

Hi and welcome to the Group. I’m 9 weeks post chemo & radiotherapy. Luckily I only had nausea for the first week but used another-nausea tablets ( Metoclopramide), provided by the hospital which worked. There are plenty of different anti-nausea drugs so if one doesn’t work you can always try a different one. I had 3 salt baths a day just the usual table salt in warm-ish but not hot water. This was I think the thing that eased the pain the most. I used a special gel containing 100% aloe Vera ( ensure you buy an alcohol free one) for the external skin, my skin went pink then red but never blistered. After going to the toilet I get in the shower and clean myself with cold water, still too painful to use toilet roll. Are you constipated or loose when going to the toilet? I was loose and initially was going   on average 2-4 times a day although one day made it to 7 times. Now I’ve gone the other way. For pain relief I had prescription strength co-codamol and liquid morphine. I didn’t like the morphine it kept me awake & made me itch. I also took ibuprofen as it is an anti-inflammatory it helped with swelling. If you’re constipated you’ll need to be careful as those drugs make you worse in that regard and you would need to talk to your doctor about stool softeners which I’m taking now. You also need to drink plenty of water. The radiologists are also helpful in relation to recommending creams externally for your skin. Don’t use anything without checking with them it’s ok. Also, I always ensured I didn’t have any aloe Vera lotion on whilst actually having the radiotherapy.  Hope this helps x

Hi ,

Firstly welcome, although I’m sorry you’ve had the need to find us.

I’d like to congratulate you on getting through your treatment so far, it’s short & sharp isn’t it? & you’ve done so well getting through to almost the end before you’re experiencing the side effects.

Going to the toilet, for me, was by far the worst part, I had radiation burns but not as severe as some & I also had trouble going to the loo rather than experiencing loose bowel movements like a lot of people do! I took stool softeners throughout (still do) & alternated paracetamol & ibuprofen for pain relief as any opiate based painkillers just made it more difficult to go. Have your radiotherapy/oncology team given you creams for your sore skin? I was given flaminal to use during treatment & Flamazine for after treatment had finished. Unfortunately from my experience the only thing for the fatigue is rest, rest & more rest. When we sleep or even quality rest is when your body repairs itself so sleep when you can & don’t push yourself too hard. The only nausea I felt was pain related around the toilet issues I suffered during the 11 or so days post treatment when my symptoms peaked. A lot of people on the forum have used portable bidets for going to the loo as going in water seems to take some of the discomfort out of it, I bought one but never used it, also I found washing after going to the loo rather than wiping was more comfortable. I also, on recommendation from one of the radiotherapy girls, only ever washed my nether regions with aqueous cream rather than soaps or shower gels etc., & still only use this now as even 16 months on anything else stings the new skin. If there’s anything else you need to ask please don’t hesitate there’s loads of lovely people in this group that have a wealth of experience between them, hopefully some will respond to your post with some other ideas that helped them through. Hope this helps a little.

Nicola 

Thank you for taking the time to message! One question are the symptoms/pain two weeks post treatment as bad as I’m fearing?

Also do you go back to normal life after.  The day I go to the toilet and walk out without giving it a second thought is the day I know I’ve made it!!

Thank you for taking the time to reply appreciate it.

May I ask,  your 16 months on so have been through whole process and had time on the other side!

Do you ever feel yourself again and go a toilet and eat food without the deep fear of the pain of passing a stool after?

And yes loose stools been at least five painful times today! 

The totally honest answer to your question is yes & no. I am back to living my life pretty much as it was prior to my diagnosis but with a slightly different phycological slant on things which I think comes along with any cancer diagnosis. Physically I have a little fall out from treatment still lingering, mainly stiffness in my hips & lower back, I’m better off on the go as I find things seize up quite quickly if I sit for any length of time, having said that I have some early signs of osteoarthritis that was picked up prior to any of this so the radiotherapy has possibly aggravated that! I also think because of the nature of the treatment some long term stenosis is a forgiven. I generally eat what I want although I do try to stick to a clean diet with as little processed food as possible, I make sure I have plenty of stuff that I know keeps me regular & as I said before I take softeners each day. I know others that have suffered the opposite to me control things with loperamide when needed. I’ll be honest & say from my experience internally things do take a while to settle & heal but you’ll get there & with me as long as I keep things on the softer side I now go to the loo with very little discomfort most days.

It’s daunting I know the thought that things may never be quite the same as before but I’m close enough to that now & able to continue living my life also at present disease free which every day I’m thankful for. 

Nicola 

I was terrified of having the radiotherapy and the 'peak' about 14 days after treatment but it was about 50% as bad as I had feared. I had read some terrible stories from others who had had really bad times on various internet sites. Whilst it obviously hurt going to the toilet, I was not in the agony I had expected. I thought I would have been confined to bed on morphine. Not so. My pain gradually improved so about 5 weeks post treatment I no longer required painkillers every time I went. Then I became constipated a couple of weeks back and the pain worsened again (but not back to previous levels) but then today toilet time hasn't been too bad, no pain killers required.   The fatigue for me was definitely worse from the 5th week of treatment and then for 2 weeks after. I now get approx 1-2 days a week where it will return out of nowhere but then the next day will be fine. The last day of fatigue I had was 6 days ago now.     If you are experiencing loose stools, then as Nicola has mentioned above, Loperamide works. I tended to use that when I had diarrhoea post-treatment and it worked very well. Now I'm using Dulco Ease stool softeners (these are not laxatives) as I have gone the other way now.  I think the biggest challenge will be the psychological fact of having cancer and fears it hasn't gone/may come back but this is something we all have to somehow learn to deal with and I am determined not to let this rule my life.   Any more questions please ask, this site provides amazing support, there's people who are at all different stages of treatment/recovery who can provide valuable advice x

Thanks for your reply it just came through to me now.  Comforting to hear only 50% as I to read some of the stories online and gave me sleepless nights.  I’m terrible with pain complete drama queen!

Will update in a week or two when I’m right in the thick of post treatment.

Sorry for late reply this only came through to me now!

Good to hear things regulate somewhat after treatment sometimes online you only hear the failures or the pain stories (which I know are real!) so nice to hear from people that are being positive and doing their best to reclaim their lives and their bodies!

i have today and tomorrow left will be sure to update in a week or so times,  will def follow your advice about keeping things soft x

Hi everyone,

I’ve just been reading through everyone’s posts, I haven’t been on here for a while, thats 2 weeks half term for you!

I was diagnosed stage 3b last March so had the most amount of radiation a person can have. I am now 16 months NED.

It really is a physical and emotional roller coaster this anal cancer malarkey. We receive the diagnosis bombshell, gear ourselves up for treatment, which thankfully is short although sharp. Our minds then want our bodies to be healed as quickly as possible so we can get back to ‘normal life’. The thing is that whilst treatment is short, recovery can be frustratingly long and most medical teams don’t really go into detail about this. Again, we’re all different and some people recover quicker than others, it all depends on your original staging, age, any other health issues etc.

Radiation is fantastic in that it literally melts away tumors. However, radiation is a beast and carries on working in our bodies for months, some believe years. The damage causes all sorts of long term side effects that take time to heal or, we have to adapt and get used to living with them.

Looking back I think its taken me a good year to recover. The first 3 months post treatment were the most challenging thereafter, things continued to slowly improve. Don’t get me wrong, I’ve been able to live my life pretty much as normal, but I’ve had to adapt to lingering side effects that have been more of an inconvenience really. In a nutshell, I felt about 70% for several months.

I saw a quote recently that I was thought was very apt:

In battling cancer, we engage in treatments that are harmful and toxic but ultimately life saving. Only after the war do we realise the high toll it took on our bodies

I think most AC patients experience similar long term side effects post treatment - bowel function, stenosis, fatigue and aching.

Bowel - its common to experience urgency, constipation/runs, cramps, wind, IBS type symptoms. Personally I never had any problems with constipation, I went the other way, but for a long time I experienced urgency. Over time it improved and whilst I’m not completely back to how I was, I think things are the best they are ever going to be. I still have urgency sometimes, I go to the toilet more than I did and my bowel doesn’t tolerate certain foods anymore. Bowel side effects are not nice to live with and are hard to talk about. You will find ways of adapting and living with it and IT WILL get better slowly.

Radiation causes inflammation and stenosis ‘narrowing’ to the anal canal and vagina. As a result, bowel movements can be painful, the skin is vulnerable to itching, tearing, bleeding and fissures and sexual function can be affected. I don’t feel the need to use softeners but every now and again I’ll have a stool that is hard to pass and subsequently I’ll have soreness and blood wipes. Of course this always sends my mind into a tizzy but usually after a few days things return to normal 

Fatigue can be very challenging. I suffered a lot with this for the first 3 months but it then passed. However, for others it can linger and you can feel fine for a while, then suddenly the fatigue hits you big time and you have to rest and slow down. 

Aching is common in the legs, pelvis, lower back, sometimes the whole body. This is something I suffered with for a good year and the aching seemed to move around. It started in my knees, then my whole body ached, like I’d had a tough session at the gym, then it lingered in my thighs for a long time. I did lots of weight bearing exercise which really helped although it was hard to get into. Gradually things improved and now I only have discomfort in my lower back when I’ve been sitting for long periods.

Of course there are other side effects, sore/broken skin, hair loss, weight loss/gain, menopause etc but having read a lot about side effects I think the aforementioned are the main ones. As I once read on here "radiation is the gift that keeps on giving"

Side effects are even more challenging to cope with when you’re recently out of treatment and know that your scans/results are in the not too distant future. Any changes, pain, bleeding etc will send your mind spiralling, “is this normal’ “am I really healing” “has the tumor gone” and so on and so on. Our minds always take us to the worse case scenario sadly. Remember this treatment is very effective, the majority of patients respond well to treatment, there is a 85% success rate.

So after a very long post, my advise would be try to be patient, things WILL get better but slowly. You will probably never completely return to how you were, but you’ll get close. You will get your life back, this whole thing will become a distant nightmare and you will move on stronger, wiser and with more gratitude. Never be afraid to ask or question your medical team or people on here for advise and information. If something doesn’t ‘feel’ right don’t delay and tell someone.

Good luck to you all with your recovery and healing. Be kind to yourselves, this stage in the journey should all be about self-care. Remember you and your body have experienced a major trauma.

Sarah x