The 10%er

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Hi Everyone.

I was diagnosed with inoperable cervical cancer in May 23. My friend told me cancer was 60% dealing with other people and 40% helping yourself. Best advice I got! Hardest part is watching reactions to your news.

Waiting for the Plan is hard but treatment starts. 26 Radiotherapies, 3 chemotherapies, 3 Brachiotherapies, 1 ipicc line, 3 kidney stents, 3 kidney drains, 1 minor chemo leak, 1 Spinal leak, 1 Blood transfusion, 3 hospitals, lots of wards, endless numbers of staff and a Partridge In A Pear Tree!

Funny parts - chemo leak happened in Treatment Chair 13, didn't sit there again! Brachiotherapy, I just had to ask for a remote control after all when else would you get so many electrical leads attached to THERE. Radiotherapy, still have the suntan ladies, but not sure you want to see it! Prada, Tiffany's 2.0 and Gucci (kidney drains bags) were a source of amusement (not least when you catch one in a doorframe!) And a Spinal leak makes you infamous. 

Don't get me wrong the journey was challenging, the tunnel was dark at times but while there are treatment options there is light even if only a pinprick at the end. Keep moving forward, each day is new. Find the funny where you can, positivity heals faster. But as much as it healed me, it healed my family more and that was nearly more important. 

3 month scan shows no cancer and hopefully 2 kidney stents being removed soon. Long may it continue! Xxx

  • Hi  and welcome to our group.

    What a story you’ve got to tell! But you tell it with positivity and humour, and these qualities are so important going through everything this cancer involves. 

    I’m glad to hear that your post treatment scan has shown treatment has been successful and you have no evidence of disease-that’s  a great result! Hopefully you’ll get your kidney stents out soon-I’ve not had them, and I’m sure you’d rather you didn’t! 

    Your experience is such a positive and encouraging one for other ladies facing treatment to read, and I hope you’ll continue to contribute to the group to support others. You may want to add details of your story to your profile so that it’s easy to see the particular path you have travelled. You can see my story if you click on my name, and it saves you having to repeat yourself. 

    I had lots of hospitals along the way-I used to call it my hospital bingo card-I was only missing the dental hospital for a full house! Joy

    Lovely to have you with us, and I hope you’ll also benefit personally from sharing, and connecting with others.

    Sarah xx


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  • Hi Chuckles,  I have so much admiration for your humour throughout everything you've been through and I'm also convinced that this humour has helped your recovery and such a good outcome.  Thank you so much for sharing and please keep us updated on your progress.  I thought I had it rough!!  But you are so correct, there are funny situations to be found in every scenario. I wish you the best of luck going forward - a big fan xxx

  • Hi Snobird. Thank you so much for your kind thoughts. I find I have a lot to be thankful for, an amazing family and support network which got me through, but its hard to lie down and say Woe is Me when the uniforms still need ready on a Monday morning! Not to mention that it is very humbling when you see how many people round you are going through worse. Humour is so important because making those around you feel better has a direct knockon affect for yourself. The running joke was that the forms we complete for every procedure which show 90% of people are likely to have X syptoms, etc, well we could bet I was the 10% bracket every time. But that was 2023 and it is now 2024. New year, new start. But if I am able to help anyone in any way I would love to be able to give back the kindnesses which were shown to me. Best of luck to yourself also! xxx

  • Firstly, I have been scrolling and navigating this forum for several weeks now, absolutely in awe of the inspirational stories and support this community offers but trying desperately to convince myself I am not part of it.

    chuckles, your story really resonated with me. I am so sorry to read of your stage 4 journey. Your humour and positivity is a real inspiration to me at a time of complete chaos and uncertainty.

    my journey started a whole year ago. I always experienced normal periods until I started passing clots for several months. I went to the drs who did a blood test and transvsginal ultra sound and albeit known to me asked me to book a Smear.

    I had the bloods done and ultra sound which were all fine but for sone unknown reason I forgot/didn’t register that I needed a smear.

    i have always been up to date with my smear tests, the last being in aug 2021.

    fast forward a year and I started to experience pain in my top bsck/shoulders. I felt breathless. I have ended up pretty much having my whole body scanned other than reproductive organs.

    the last few weeks the pain has moved to my lower back and tummy and the penny has dropped. I checked back on my health record and I was asked to attend a smear a year ago that I didn’t do. My heart is braking.

    I have two small children who are my absolute world. a loving family snd everything to live for.

    each day that passes I feel more and more zapped of energy. I feel more and more pain every day in different places. i am scared witless.

    i have now had a smear test. The dr says the cervix looks healthy but I know that doesn't mean anything.

    i have paid a lot of money to get this all fast tracked but in my heart i fear it is all too late.

    i am not coping. i have been signed off work. taking anti depressants and constantly crying. whilst i haven't been diagnosed i know what is coming. 

    chuckles your story helps immensely and i hope when the time comes i can be just as strong.

    Natalie

  • Hello, my heart is breaking reading about your story and how you are feeling. Everything you said sounded just like my story . I also missed  a smear and was losing clots everyday . I didn’t know why to do even though I probably did really . Think I didn’t want to acknowledge this could be serious . I was diagnosed with Stage 3 cervical cancer  after having to go private for the diagnosis as my GP was no help and wouldn’t do a smear while I was bleeding which was by now everyday. I had a wonderful consultant and radiographer . I had radiotherapy everyday for 5 weeks, brachytherapy and fast forward I have been clear of cancer for 18 months . You will find absolute strength from somewhere I have no doubt but it’s ok to have days when you are not strong . I am so sorry you are so worried but please know you can reach out anytime from support from us all . I wish you lots of luck and love as you navigate this and will be thinking of you . X

  • Hi Debbie,

    thank you so much for your quick reply. As you can probably tell, I am not sleeping well hence the ridiculously early post!

    it is a real help knowing there is such a supportive community out there.

    this is putting a real strain on my family who are having to bear the burden of my emotional outbursts and financial implications of each test.

    i hope to have the smear results back early this week then hopefully we can move things forward at pace although I think we will have to refer back to NHS.

    i am already worried it has spread to neck or base of skull as having excruciating head aches sickness etc.

    it is all becoming so overwhelming.

    thank you again for your support it really means so much.

    natalie 

  • Hi Hantshog.

    I am so glad if my story can give you hope. The first thoughts I can give you are BREATHE! Slow your world down... You are not lost, you have a wonderful family you adore, friends who care deeply and a support network in us, MacMillans, your GP and colleagues. You are not alone. If I learned anything on my journey, it was that my moods directly impacted my family, if I had a good day, so did they, there was a lot of work to do to retrain the thought process that it wasn't all about me (but sometimes it was! Joy). Push for your results on all tests... She who shouts loudest gets results. Panic is not your friend, in our house you can wake up each morning and be a victor or a victim... There are no victims in our house. And each day is a new day and a new start. 

    Positivity is a life generator and life is far too short to be unhappy. Cancer is not necessarily the end of life as so many of our stories can testify, it is sure a difficult journey but one you can share with many of us. My journey still continues, while I have beat cancer to this point, my kidneys are a bit slow in catching up and stents had to be replaced. There are many changes to my new normal but I am here and that all that counts. Take care, breathe, you are not on your own. Xxx

  • Thank you chuckles!

    after a few terrible days and 15 hours of sleep last night I am feeling much more positive today.

    connecting with some of you lovely ladies has actually helped immensely already. I am trying not to burden my family with so much of my worries as I have seen the toll this has already taken on them and I am yet to even receive a diagnosis which may sound slightly crazy.

    i am hoping this week will bring me a little closer to diagnosis and treatment.

    if you don’t mind me asking - where was your cancer found other than the cervix?

    Thanks

    natalie 

  • Can I just add a point before you get a reply and that is that inoperable cervical cancer doesn’t mean it has spread, and doesn’t mean it is incurable. Cervical cancer can normally only be treated by surgery (a radical hysterectomy) if it is staged at stage 1, or rarely stage 2a. Inoperable does not mean incurable, as many of us had chemo and radiation at stage 2 and above, with a view to cure.

    Sarah xx


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  • Thank you Sarah - that’s really helpful to know. Xx