5 years!

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So today I was discharged from the hospital - 5 years, can't quite believe it.  I've cried a lot this morning, a real proper mix of emotions.  
Obviously thrilled and feel like I want to shout it from the rooftops - but time has moved on, people have moved on and I've been stuck in this regular round of fear at every check-up.
I wanted to just tell everyone my experiences and where I am at 5 years later.  Everyone is different, but this is my experience.
I have flare ups of pain occasionally, I have bleeding now and again.  My bladder is pretty goosed and gets cystitis at the drop of a hat.  I rush to the loo every single morning and every now again, I have leakage that I didn't even feel coming.  My stomach is very choosy about what it likes me to eat and I'm learning to negotiate that.  I've not managed intercourse yet, the dilators hurt and I know much of that is a mental block for me and I'm getting help for that.

All that said, I'm not complaining about any of it believe me.  Life is wonderful, I am here, I am 5 years later.  I've been through something I wouldn't want for anyone. I am so grateful to everyone on this forum - there was definitely some dark days in the beginning!!  But I've learned lots and despite it being what everyone says, it truly does give you a different perspective on what's important in life.  And maybe that's something positive to take from it all, I really do appreciate everything, I eat better, I exercise more and have my priorities truly in order.  I guess the fear will never go away, but fingers crossed for the future.

What a day!  Time for a little celebration and a very big sigh of relief!

Deb x 

  • Well Done Deb! Wonderful news! Champagne

  • Hi this is so positive and I am so happy for you x Enjoy today and the relief you must feel, also the hope you give to people on here like me - thank you ! Heart

  • Good morning Debs, I can so relate to your post and I am three years 2 months post treatment and my last appointment is on the 31st October with my oncologist and also to get my results for my last CT body scan don nearly three weeks ago. Honestly I am feeling sad that some of us now have to wait so long for results from scans they say is due to excess pressure on services now. I don’t have bleeding but this past 12 months have had intermittent blisters which they say is friction on damaged skin! I did use a product called wipe and had a breakout of blisters. I cannot wear any tight clothing around my crotch. I have not managed intercourse due to severe scarring at entry but no damage inside apparently. I still juggle diet and bowels and lactose intolerant. If I’m going to be out and about one day I have to restrict certain foods the day before. Just discovered sourdough bread gives me the runs so certain healthy foods I cannot eat. Due to bowel issues and urgency at times I now due pelvic floor exercises which in turn have tightened my vagina which adds to difficulty in intercourse. I’m not young so kind of accept it for me but feel terrible for my husband. I don’t drink alcohol at all as this is for me the worst for my bowels decision to let go! Life is enjoyable and I’m thankful like you but it’s a different life. My oncologist said I may see a small improvement as the years go by but in all honesty I just think I have to accept this can be the after effects from treatment which I found is very well documented in the oncology department. I am a bit apprehensive about my supervision under my oncologist department ends so soon but she has assured me I will still be able to contact them for any problems. I wonder if other cancer survivors who have treatment for other cancers can completely forget it ever happened due to no long standing symptoms from treatment. I feel most of us in this group can’t forget and we just find ways to manage the best we can. We are very lucky to have effective treatments and hopefully this treatment will find ways of lessening the impact of radiotherapy.

    Congratulations on you five years.

    Julie

  • Definitely a time to celebrate so happy for you Deb thanks for letting us know your good news.

    I am 2 years post treatment due an MRI scan end of month.  I agree life is wonderful i have had three grandchildren born since my diagnosis and my son has got married so lots to keep alive for! 

    I seem to have more or less the same late side effects as you although ok bladder wise.  Still have sore skin around the vaginal area especially after wearing tight clothes or riding my bike! Suffer from wind if i eat certain foods and need the loo urgently a couple of times in the morning.  But have accepted this is my life now so happy i am here! 

    I am lucky to have a monthly anal cancer support group to attend in Sheffield run by two Radiotherapy nurses who I saw during treatment.  There are only nine of us in the group it does keep growing and we have also met for lunch a few times and have a WhatsApp group. It was so good to actually meet other people with anal cancer we have such a bond and friendship now. 

    I also couldnt have managed without the lovely ladies on this forum to support me they are the best. 

    Keep on enjoying life!

    Best wishes Carole xxHeart eyes

  • Huge congratulations  , this is amazing news. 

    Nicola 

  • Hey

    the what’s apps groups sounds great! Is anyone allowed to join or is it just for you in Sheffield? xx

  • Deb

    What wonderful news and thank you for giving such a positive and realistic update.  Go have your celebration and carry on enjoying life!

    Irene xx

  • Congratulations   such wonderful news and a huge relief for you! I am 3 years post treatment (my next scan in Nov). The relief is palpable. It’s been a rollercoaster of a journey. Like you I’m learning to live with the “new me”. Bits don’t work and it’s had effects on my parts of my body that weren’t even involved! Or so I thought… but I’m here and my little girls have their mummy. 

    For that alone I can cope with whatever curve balls it has thrown me!!! 

    A hooray for us all Raised hands tone1 it is a truly hard thing to get through and we should definitely celebrate getting through these tough times. 

    Greatly helped by the fantastic people on here

    Cheers to you Deb’s and here’s to many more years ahead of us!! 

    PPR xx