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The following represents an amalgam of the experiences of many, many of us before, during and after diagnosis and treatment. We hope you will find it helpful, and address the questions and concerns you are bound to have. If it doesn't then please post your question and someone will endeavour to assist as, in some shape or form, we have all been through this and come out the other side. Equally if you have some advice that is not covered, then please add it (especially if you are a male AC sufferer, as we don't have as many posts and yet this condition affects us in equal numbers).
What they don’t tell you and what you can do about it
This is intended to give an indication of some of the side effects and some feelings you might experience if you’re being tested for anal cancer, or if you have been diagnosed with it and are facing the gold-standard treatment of five and a half weeks of chemoradiotherapy. The chemo is given in weeks one and five, and the radiotherapy in short daily sessions Monday to Friday for the whole five and a half weeks. Please don’t be scared. Not everyone has all or any of these side effects or, if they do, they do not last as long for everyone. But we hope to address fears about whether your experiences are out of the ordinary, as it can be difficult to take in everything that you are told, and the medical profession do not necessarily tell you what can happen. Most importantly we want to share with you some tried and tested solutions to help alleviate some potential symptoms.
Anxiety, fear, anger, frustration - in fact a full range of emotional reactions - are entirely predictable whilst you wait to know what they have found, and what they are going to do about it. The following tests can also have some physical side effects:
Chemotherapy - depending on your health authority you may receive this via a cannula in your hand, which needs to be monitored so you will be admitted to hospital, invariably for weeks 1 and 5 of your treatment. Others are able to stay at home with the chemo given in tablet form, or with a pump attached to a PICC line which goes in at the inner elbow. Some health authorities put you on a course of antibiotics to reduce the chances of getting an infection whilst your immune system is low. They will invariably want you to have a blood test before each of the two weeks of chemo to make sure you are healthy enough to undergo it, especially as your white cell count may be lower by the time of the 2nd phase.
Immediate effects of chemotherapy:
Radiotherapy - this will be given to you as an outpatient (unless you are in hospital anyway for chemo), so you will need to go to the hospital every Monday to Friday. The sessions themselves don’t last long but, depending on your journey time, they can prove pretty tiring. Some people are required to drink lots of water before each session so as to protect the bladder, but this depends on the precise location of the tumour. The length and precise target area of your radiotherapy blasts may change over the weeks, as the radiotherapists may wish to concentrate on a particular area in the latter stages. You may not be able to drive yourself throughout, for instance if you are on pain relief patches (which contain an opiate), or towards the end of the treatment if sitting has become painful.
Immediate effects of radiotherapy -
- diarrhoea and mucus, and considerable pain when pooing. Some find a portable bidet filled with warm water and placed on the loo helps, or a plastic washing up bowl on the floor if your balance isn't so good. It eases the pain to poo under water, you won’t need to use loo paper, and you can tip the contents down the loo
- constipation, which can be even more painful than the other problem. If you are taking morphine for pain relief, this slows everything down so you are likely to become constipated. Some find that taking one or two sachets a day of a laxative like Movicol will keep everything moving satisfactorily
- try using a squirty water bottle to wash yourself, or Epaderm or E45 shower cream
- a hairdryer on a cool setting is good for drying yourself as even the softest of towels can be too harsh.
- the menopause will arrive if you haven’t already been through it, so hot flushes day and night, and therefore poor sleep patterns
- very sore, red, inflamed and swollen lady bits - try oat baths (a cup of oatmeal in the foot of cut-off tights hung under the tap as you fill the bath, squeeze it out into the water and then soak in it). You need to keep the labia skin well hydrated and moist - if it's not too sore to touch, try Flamazine or Cream 7, or coconut oil which is anti bacterial
- shrinkage of the entrance, width and length of your lady bits, for which they will give you a dilator with different size adjustments to help stretch the area once your treatment has finished. Take it slowly and do not expect things to improve quickly - it won’t be comfortable, certainly not enjoyable, but stop and try another day if it is painful. Some try instead with a small vibrator or start off with just a finger, or forget the whole idea.
Longer term side effects of chemoradiotherapy
You may feel emotionally fragile, tearful, depressed, apathetic, angry, and even have feelings of an anti-climax - especially as you can feel you are on your own and not having a daily session with supportive radiographers etc. You may also find yourself grieving for the loss of a certain lifestyle as a result of the treatment, and worried about your chances of resuming a normal, or any, sex life. Bear in mid that your body has been burnt by radiation, poisoned by the chemo drugs, and, depending on your circumstances, you have possibly received more strong opiate painkillers than ever before. So some of the following may hit you at any time, from soon after your treatment ends, to months or even a couple of years later, and they can come and go with considerable intervals of time in between:
- diarrhoea - made worse by too much fruit, veg and other fibre, often worst in the mornings. Codeine phosphate or Loperamide can help, and keeping to bland food
- constipation - if pooing is painful anyway the added complication of pressure will make it feel worse. It can be relieved by eating more fruit and veg and drinking lots of water, and taking a sachet or two a day of a laxative such as Movicol
- sore or itchy bottom due to diarrhoea, or caused by a bowel movement following a bout of constipation - try an anti inflammatory like Ibuprofen, plus a steroidal ointment such as Uniroid for about five days
- abdominal pains, wind, a constantly aching bum and / or a feeling that you need to go to the loo but nothing happens
- incontinence, leakage or a feeling of not being fully in control.
Remember that your sphincter muscles have been radiated and are still re-building themselves, so they may not be as strong as before, or working as they should. Incontinence pads can make you feel a little safer as getting out and about is important for your recovery, but only when you feel like it.
Wow, Louise. That is a very comprehensive collation, you have been busy! You must have a bent in that direction! Excellent for a reference point for others joining the Bum Landers!
Useful info collated by members of the Anal cancer group
You have done a fantastic job and have covered loads,well done.I will read it through again incase there is more to add.x
Take care Carla xxx
can only reiterate what Mary and Carla have written,
All the posts/replies on here have been really useful for me. I have only completed first week of treatment and I am fine so far, trying really really hard not to focus on what's ahead but, as everyone says we are all different, I guess it's better to be prepared and anything less will be a bonus.
I was just wondering - I am having my radiotherapy on my back, not with my bottom in the air. Is there a particular reason for this?
Also, does anyone know how soon I will go into menopause? Is it immediate or am I looking at a couple of months down the line?
Hi, Suzzie. When I was being assessed by the MDT, my consultant changed, one left and another took over. The first appointment I had, I was told I would have a PICC line and radiotherapy on my front with my bum in the air. The new Onc said no, Hickman line and RT on your back! I asked why, but I didn't get a satisfactory answer. Maybe just Onc preference in some cases! Best wishes, Mary. X
That certainly is impressive Louise .... Must have taken so long ...Well done! I will add some comments about my experience once I'm at a computer rather than on a tablet.
I had R/T on my back and think that apart from looking undignified it must e more uncomfortable on your tum with your boobs squashed on a hard table. . Cant answer your question re the menopause as I am well past that,
Excellent collation of info Louise, I think you have covered pretty much everything that we can face, although of course, we are all different and will be affected accordingly. I do think it's good to have some idea of what we might encounter along the way.
However I would add something for the ladies about the menopause, as some of us are affected who haven't reached that stage, or who are only starting to head towards it, in perimenopause. I'm also answering Suzzie's query too - I only wish that the Oncology teams out there would make this clear as it really isn't fair to find out along the road of treatment, or worse, immediately post treatment.
We do go into menopause immediately, by the end of the six weeks treatment, so there is no "winding down" period so to speak and not a heck of a lot (absent even?) support around our gynae issues. Unfortunately, it can be rather unpleasant to be hit by meno symptoms straight after treatment but again, it is very much an individual thing, some have few symptoms or they aren't too bad!
Hopefully the Oncologist should have written to your GP informing him that you may require/wish to have HRT due to the effects of the radiotherapy causing menopause but I would certainly check and ask if this has been done before treatment commences - then your GP will be prepared in advance.
Newbies, please have a read of this!! Info collated from members of the Anal cancer group.
Ok I feel a bit better and a bit more normal about the RT on my back. I am certainly happier to be on my back, a little more dignified, I also have three tattoo marks, one on each hip and one just above my pubic bone.
With regards to the menopause thank you blind faith, I have let my GP know and she is fantastic so she said just to let her know when I start suffering and she will sort something out. I have just started the second week of my treatment and I was due a period last week. I "came on" this morning although it's not quite " normal" so not sure if this is a period or something tondo with treatment? It is not as heavy as normal and much darker than normal?
When can I expect to lose my public hair?
i have had some pain in my back passage this evening, it has subsided now, surely this is far too early to be feeling effects?
i mentioned in another discussion that I had been really bloated a couple of days last week, this also seems to have subsided, thankfully.
blindfaith, you said you hadn't heard of anyone else having to drink 6 glasses of water, I will see if anyone at the hospital can shed any light on this tomorrow. To be honest I never questioned it. Has anyone else had to do this? maybe it is due to the location of my particular "beastie"
As an aside, and just because it's good to talk to you guys I dropped my daughter off to uni yesterday. What an emotional wrench, had lots of tears and we have had more today. Trying to be really strong just to make sure she can get through the next few weeks! At the moment I feel so emotionally drained, can't quite see an end to this but I am hopefully the next few weeks will go quickly. Roll on 2016!
The next weeks will go quickly Suzzie, just count them down xx I guess the bleeding could be period related although to be honest, I doubt it. I did have some nasty issues with bleeding but they were down to a severe reaction, it certainly isn't like that for everybody so try not to worry! (easier said than down I know). I do remember that bleeding wasn't uncommon though and I was told that it was the beastie "breaking down" so maybe that could be what's happening to you. As for the hair - I can't remember exactly! I think it was a couple of weeks in but because I had burning early on, that would have affected it too I think. I know all these tales must be scaring you but it honestly doesn't affect everybody badly. Try and deal with any problems as they arise, if they arise I should say, it makes things easier to handle.
None of my kids ever went to uni but I do know the wrench of watching them move on into their own lives, they are emotional times but hopefully in years to come, you will look back on it with smiles too. Just think, by the end of October it will all be finished with and you can get on with your life, recovering your strength and getting better. It will happen, life may be different in some ways, but us humans are remarkable beings - we adapt. All will be well.
Thanks blindfaith, maybe I should mention the bleeding tomorrow. It is not causing any discomfort or pain. I told them today that I thought it was a period but wasn't sure if I should be having a period because of menopause? The nurse said I should ask the rest if my family members what age they started their menopause, I had to point out I would be going into early menopause because of treatment! Bit of a worry they weren't aware.
As ever, thanks for the support
Just thinking about my treatment.I had the coil so needed to be out before starting treatment.I was good for a few days then had a period,nothing too heavy. I was a bit embarrassed as not only did I have to flash my arse to them ,they now had to see my bloody pads !! They took it all in their stride.I was on my front too which was a bit of a pain when I had the chemo pump as it got in the way.do our tattoos ever go??.
I think by the end of treatment I was pubeless and hardly got much now ,which is good(it's all gone to my top lip haha)
As for menopause,for a while I was having hot flushes very frequently then earlier this year it suddenly dawned on me that I was hardly getting any.now I'm not to bothered by them.if this is as bad as it gets ,I'll be happy !!
Anyway off to bed,I had my sexy boot taken off today and I can drive but had to buy some supportive shoes with memory foam so I can walk around but I need to'rest often as it's still going to take a couple of months to heal completely.night night x
Suzzie, I had to drink two glasses of water before treatment. It was to move the bladder out of the way of the radiotherapy beams.
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