Hi

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HI

I have been dealing w cancer for some time and a member of the anal cancer forum. I didn’t tell many people outside that forum because I wanted to feel normal, the cancer was curable and let’s be honest it is a bit of a downer!! January 2020 was a massive cause for celebration because there was no evidence of disease and the prognosis was good.

Jump forward one month and we all get hit with coronavirus and one month more and I am told that it is back with a vengeance recurring in my liver and lungs. I am now deemed incurable but treatable - I can’t pin them down as to what “treatable” means, but courtesy of google I think it is to try and slow things down and get more time.

The doctors are shocked and surprised at what has happened (I can’t start to tell them how I feel!!) – they don’t have any answers as to why, save to say I am just unlucky. Worse still the consultant had to tell me over the telephone as face to face appointments are not allowed during the pandemic and there are strict restrictions on what cancer treatments can be provided until the pandemic is over which could be months.  As it is apparently aggressive and the long term prognosis not good they have agreed to start chemo asap subject to me understanding that if I were to get covid-19 I would not be a priority and unlikely to get treatment but apparently that would be the same without chemo given my diagnosis/prognosis.

I am trying to be positive for the family but inwardly struggling - does it get better?

Deb1E 

  • Hi all

    Finally got to see consultant face to face or rather mask (me - I was given a single use one by the nurse) to full PPE (her) - was difficult to talk but it helped speaking to her after being told I was incurable in a phone call. 

    Prognosis on basis of scans etc = months but she did say she is always being surprised by patients - their real concern is at the speed of recurrence and spread given the treatment last year but there are lots of things they can try so my only job for now is to make sure I keep well and focus on this treatment.  So 3 cycles starting tomorrow and then a scan...  

    Roobarb - no going outside... so will get a walk in early tomorrow morning.  Apparently being bl**dy minded when dealing w cancer is good xx

    Carpe Diem
    Deb1E
  • FormerMember
    FormerMember in reply to Deb1E

    We know we're living in a very different reality when that is good news. It does sound positive and gives you something to work with so I'm really pleased for you.

    Wishing you the very best of luck with your treatment, you have to be your own best friend. Have a lovely walk in the morning Blush

    xx

  • Hi All

    Not been online for a couple of days - was shattered on Thursday as it was a long day and then got my copy of the Consultant's letter to my GP yesterday - I knew the diagnosis and prognosis but seeing it in black and white really hit home... so went from being positive at starting treatment back down in less than 24 hours.

    Daloni - you were spot on with the treatment I was really worried but aside from an issue getting the cannular in partly because the visors they have to wear slightly distort things it all went ok but it was a long day.  I am sorry to hear about your day but pleased that things have improved a bit.   

    Maz59 - pleased to hear yours went well.

    Wig has arrived today so got that to look forward to!  Hope you are all enjoying the weather.

    Love and virtual huuugs x

    Carpe Diem
    Deb1E
  • FormerMember
    FormerMember in reply to Deb1E

    Hi 

    Ah yes. The letters. They can really stop me in my tracks too. Read, file and forget. That’s my recipe. The chemo will mess with your head too so don’t forget that. Knowing it doesn’t change much except that you can at least explain it to yourself and know that it will pass. You won’t always feel like this.You won’t always feel like this.

    Today is another day and I hope that you, me and Maths are all moving forward again.

    Lots of love

    Xx

    edit: maths? That should have read Maz. Sorry! 

  • Hi

    Good to meet you. Welcome. 

    I've had carboplatin and paclitaxel too - horrible drugs but I came out the other end in one piece. Please be kind to yourself and do lots of nice things just for you - no time to be meeting others needs with these horrible drugs in your system. 

    I noticed you mention a wig - I was told those drugs would lead to my hair falling out on the first round after just a few days, lots of people kept saying 'it won't happen that quick, it'll take 2 rounds', but the doctor was spot on and it fell fast. I decided to take matters into my own hands and clipper it off as I thought this would be less traumatic. My husband was on a night shift and I did it all by myself. I then looked in a mirror and broke my heart. I looked like an army recruit with tiny hair sticking up all over my head in a spiky, awful formation. Too late, I'd attacked it (yes, that's the correct verb) and I regretted it. I wish I'd had some support, some laughter and some kindness over that - I thought I was taking control and I wasn't that bothered as it's only hair but actually it's one of my defining moments! My husband had the shock of his life coming home that morning - I won't forget the awful look on his face either! Dreadful.  

    Just a thought, you do as you need... 

    Be thinking of you as you adjust to life with taxol. 

    x

  • FormerMember
    FormerMember in reply to Gobaith

    Oh Clare! What a horrible night that must have been. I want to cry for you, even now so much later. 

    I had a better experience of taking control and the first time I went to Toni and Guy where a charming young man spent an hour shaving my head by degrees, making it into different styles as we went before the final chop. He refused to accept payment.  My husband came with me and we went on to buy a couple of new dresses and swing by the Body Shop for a free makeover. 

    Of course with corona lock down that’s now impossible so perhaps my second experience is more useful. I invited my friend and neighbour over. She clips her husband’s hair. She clipped my hair gently with lots of laughs along the way and a few photos. I made a Facebook post really to help spread the word that I was back in chemo and give people the chance to deal with the shock of my new look before seeing me in person. I know that’s not for everyone but it worked for me. 

    How are you feeling now? 
    xxx