Newbie saying Hi !!!

  • 14 replies
  • 57 subscribers
  • 499 views

Im new to the group and just want to say Hi to everyone. I found out 4 days ago I have anal cancer so my head is still spinning and Im looking at some information out there on the world wide web . I have another biopsy in a few days so they can grab a few more cells for grading etc as consultant said the colonoscopy biopsy wasn’t enough. He has already mentioned the 5/6 week chemo radiation I will need 

So Im on the very start of my journey 

Im located north wales anyone else getting treatment north wales or on the Wirral? 

  • Hi Emz , 

    I have just started my treatment , still coming to terms with it all but this forum is a valuable support .. My treatment is in Nottingham , has taken 7 months to diagnose due to some rare malignant cysts as well … 

    Take care 

    Chrissie xx

  • Hi Chrissie

    I hope you treatment now runs smoothly 

    I hope once I get over the shock , I can toughen up and get cracking with this treatment 

    Emz xx

  • There is nothing better than talking your fears through with those who have the same condition .. we are have a different journey but plenty of advice xx

  • Hello Em1976

    I am so sorry to hear of your diagnosis, but a warm welcome to the forum.  Getting a cancer diagnosis is such a massive event and one that we all remember only too well, the early days are the worst when everything is new and strange and (for me anyway) terrifying.  The best advice I could give you right now is avoid Google if you can, much of the information on there is outdated and sometimes wrong.  I say that with a great deal of sympathy, I do know how difficult it can be when you are still reeling from the diagnosis and want to know more.  

    There will be a lot of waiting in these early days, but a lot is going on behind the scenes.  When all the information from scans, biopsies and the like is in, there is a multi-disciplinary team (MDT) meeting to decide the best course of treatment for you.  Once it starts, you will feel a lot more in control of what is going on.

    You are way outside my area but I am hoping someone else in your area will pick up and give you their experience.

    You have come to the right place for knowledge and coping strategies, so please let us know when treatment is due to start.  And the best of luck with your biopsy.

    Big hug

    Irene xx   

  • Thanks Irene

    Trying to stay busy my head is swirling 

    x

  • Hi  ,

    Welcome to our little corner of the MacMillan Online Community although I’m really sorry to learn of your recent diagnosis.

    The very start of your journey is a tremendously worrying, stressful & sometimes very confusing place to be but as Irene has said try not to refer to Dr Google as an awful lot of the information out there is really outdated or completely fabricated, if you’re looking for reliable information then either here at MacMillan or the cancer research website are good places to start, there is also the anal cancer foundation which I believe was founded in the US but now has a UK site too.

    I had my diagnosis in February 2018, I had both surgery & a course of chemoradiotherapy, I was discharged from surveillance last June & I’m cancer free as far as I’m aware. If you click on my username you can read a little more about my journey on my profile. 

    The early days are a whirl of appointments, scans then more appointments but hopefully once a full picture is available your team will get you on the treatment pathway. 

    I hope that someone that has had treatment where you’re expecting to be treated will see your post & be able to give you some reassurance. 

    If you have any questions or just want some general information about what to expect etc., please feel free to ask, we’ve a wealth of experience between us as we’ve all been where you are now & we are an open, friendly & supportive bunch. 

    Nicola 

  • Hi  Nikki65 

    thanks for the warm welcome, Im sure I will have lots of questions in the coming weeks. Your journey is very inspiring 

    Emz x 

  • HI Emz, and welcome to the group nobody wants to join. 

    The first few days after the diagnosis are a blur, aren't they? I was weirdly calm, but I could feel a squirming ball of panic way down deep that I didn't want to let out.

    It's almost impossible not to google, but try to keep it to a minimum. It's overwhelming and usually dramatically alarming.

    It's a good time to focus on practicalities- can you arrange for some time off work, rides and meals, dog walking, getting a Sitz bath or a bidet attachment, making sure you've got lots of comfy pants and loose knickers. 

    And we'll be with you all the way.

    Hugs

    Suz

  • Thank you so much for all the advice 

  • Hello Emz1976, I am sorry to hear of your diagnosis. Its my husband not me who's been going through it, but I would reiterate what others have said, stay off Google and listen to the people on the forum.  I didn't post on here until 2 weeks after my husband had the operation, but took time to read through other peoples posts, and found lots of information from the forums from what other people were saying. My husband worked right up until the day before the operation and I think that helped us both feel more 'normal' as normal as you can in this horrible situation. It helped him to keep busy and focussed. I appreciate that everyone is different though and you have to do whatever is right for you. Everyone on here is very supportive, not just replying to my one post - but just from reading what people post on each others post I have found very helpful and comforting in some ways. You feel like you are the only person in the world going through this, and of course you aren't, but in this little safe space I have found on here everyone has your back. x