Starting treatment soon

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Hello, I have been diagnosed with anal cancer T2 N0 M0 and will be starting chemoradiation soon. I will be getting a line fitted and the chemo will be attached and administered over the 1st week and also the 3rd or 4th week, not sure which yet. The radiotherapy will be Monday to Friday for 5.5 weeks (got the planning scan tomorrow.) I live on my own and have been through all sorts of emotions, and at the moment am feeling lost and scared. Can anyone give me an idea of the side effects from the chemo? Could really do with a hand hold x.

  • I’m sorry to read this and no I haven’t been through this but have just been diagnosed with breast cancer so can really relate with your lost and scared feelings….. it really is an awful feeling, I actually feel sick a lot of the time with the not knowing. Maybe a virtual hand hold but then what goods that going to do? Lets do this together… take care, speak soon x 

  • Beatrix88

    My hand is right there holding yours - I am so sorry to hear of your diagnosis but you have come to the right place, the majority of us have have experienced just what you are going through right now.  These early days are just the worst when everything treatment-related has yet to start.  I am guessing that you are just a couple of weeks away from starting chemo/radiotherapy.  The treatment is short and sharp but anything that rids you of this disease is bearable, just keep thinking about the end result.  And once treatment starts, you will feel a lot more in control. 

    I am not 100 percent sure if it was the radiotherapy or the chemotherapy which gave me diarrhoea especially towards the end of treatment so I wore Tena pants from about four weeks in although I never actually needed them. I didn't have other side effects from the chemo, I was much more affected by the radiotherapy with very sore skin, but again that didn't happen until about the fourth week.  Please remember too that not all side effects come at once, it is very much towards the end of treatment and for a couple of weeks afterwards.  Fatigue is common, your body is using every ounce of energy repairing itself, so be very kind to yourself and rest as much as you can if you need to.  If you start having pain that is difficult to bear, please don't be a hero - shout out to the team treating you, they normally prescribe painkillers and creams and potions the same day.  Just be aware that if you are given opioid-based painkillers (Oramorph and Co-codamol) they cause constipation which you really want to avoid if your back passage is raw.  Laxido is a stool softener (not a laxitive) that I would advise taking alongside strong painkillers to make the passage of stools easier.

    I couldn't have done without the Sitz bath, a very cheap plastic bidet which sits on the loo and is wonderful for soothing the area when it gets very tender.  I also used mine for bowel movements, somehow going under lukewarm water was a lot less painful and the Sitzbath is easily emptied and disinfected.  I used disposable incontinence squares on the bed as I did have some leakage towards the end of treatment.  I wore very loose comfortable clothes going to and from the hospital and stripped off the minute I got home.  It would be a good idea to get lots of ready meals that take the minimum of preparation.

    We are always here to offer support and coping strategies or if you just need to talk.

    Sending a big hug

    Irene xx

  • Thank you Mumof3, and sorry to hear your diagnosis too. I haven't been sleeping which makes everything worse, but my GP prescribed a strong anti-histamine which has helped. Thank you for the support and yes we can do this! xx

  • Thank you Irene that's so helpful, I will make a list. I was wrongly diagnosed with hemmorhoids over a year ago and bought a sitz bath then, so it sounds like it will get plenty of use. xx

  • and thank you for the support Irene xx

  • Beatrix88, it is so sad (and extremely worrying) that so many come on here and talk about an initial diagnosis of haemorrhoids.  I am so sorry that you are yet another who had this happen to you.

    Thinking of you xx

  • Bless you… I may have to have a word with my doctor because this lack of sleep is really not good and yes we CAN do this x 

  • Hi  ,

    Firstly welcome to our little corner of the Macmillan Online Community although I’m so sorry to hear of your recent diagnosis. It really is a scary place where you’re at right now, I’m sure we can all sympathise with you on that one, I certainly can, I was terrified after my diagnosis even though my Dr’s were telling me I’d been caught early & stood a good chance of being cured. It was the complete loss of trust in my own body & my health that frightened me too, I’d never suffered any major health issues before I was diagnosed & really wasn’t prepared for cancer! 

    The misdiagnosis of haemorrhoids is unfortunately too commonplace in the case of anal cancer & often leads to much later diagnosis which just isn’t on & needs rectifying! I was listening to the radio on the way to work yesterday & there was a leading oncologist speaking about why our cancer treatment rates aren’t improving the way they should be & he said one of the problems is that our GP’s are not referring people as early as they should, I know that sounds like a bit of a cop out but it’s definitely true in the case of anal cancers!

    It can be a bit of a double edged sword living alone when going through something like this, I had my 16 year old daughter at home with me but she started her GCSE’s the day I began my treatment so was studying in her room most of the time, my dad came to stay while I was having my treatment & I was grateful for that but I would have been fine on my own to be perfectly honest, he walked the dog for me on days I was feeling particularly tired but apart from that I would have managed ok. The real difficulty is dealing with your thoughts & emotions when you’ve nobody to sound off to especially in the small hours when you’re struggling to sleep but that is exactly what we’re here for, you’ve now found people that completely understand what you’re going through & hopefully we can offer some useful advice along the way. On the flip side of that once your treatment starts you can do as you please & don’t have to worry about getting things done if you don’t much feel like it. 

    You’ll find once your treatment begins you’ll begin to feel a little more in control again & you’ll soon get into the routine of those daily hospital visits for your radiotherapy, I was really surprised on how quickly the weeks flew by. I would carry my treatment schedule with me in my bag along with a bright pink highlighter pen & found it really cathartic to put a big old line through the days appointment as I was leaving the hospital, the pink lines really quickly overtook the appointments left. 

    Regarding the side effects of the chemo side of the treatment, my regime was a little different to yours, I had a short infusion on day 1 of treatment then oral chemo twice daily each day of treatment thereafter. I had little to no side effects from the chemo. It seems some oncologists choose the different regimes, I’m not sure why, we have other members that have had the pump weeks 1 & 5 so hopefully someone will be along to share their experience of that with you. 

    Hopefully it’ll not be too long before you start your treatment if your planning scan is today. Remember you’ve always got someone to chat to here, we’re here to support you however we can. 

    Nicola 

  • Thank you too Nicola, I really appreciate you taking the time to comment and it’s comforting know there so many others to talk to. Take care x 

  • Hi  , I found following my diagnosis that it was so important to have others to relate to, someone that knew exactly what I was facing & everything that came along with that. This forum really was what got me through my diagnosis & treatment & I’ll be forever grateful for those people that offered me support at that time. I hope you soon have a treatment plan in place & can begin your fight back to good health. 

    Nicola