Been reading first time post

My name is Judy and my diagnosis was a serious cancer grade 3

Found by accident within 3 weeks the surgeon did the debunking surgery or radical hysterectomy he was pleased with it and said he closed thinking he got everything not in any other organs or lymph nodes

So then with a ca125 reading of 160 I started chemo carboplatin and taxel

Both the first week then just taxel for the next 2 and so on for the next 18 weeks straight I dropped to 44 the fist round then to 24 by the second and 11/12 by the end no Real problems I didn't feel Nauseous as the meds kept me comfortable I'm going for my first three month checkup on Tuesday very nervous the doctor said to me after I finished treatment I was in remission just hoping it stays that way but very anxious I have been suffering from neuropathy of the feet and hands and my body has just been aching and sore almost like arthritis since treatment finished people say I've had a really good attitude all the way through but I'm finding I'm feeling more down now just being scared of what might happen I'm 65 had been in great health before

I lost my only son 15 years ago so when I was given the cancer diagnosis I remember thinking this isn't as bad as hearing about Christopher so I've come to this from a place where the worst possible thing has already happened to me so I've been a bit like okay let's get on with it what will be will be but I am nervous about the next stages and after reading some of the other ladies posts think I must be grateful for I am where I am

15 Replies

  • Welcome. I hope you will find us a source of friendship and wise experience!

    Everyone has different lives and histories and some, like you, have had to live with some very very hard stuff.

    What we all share is feeling hit by a steamroller at the end of our first treatment and taking longer to pick ourselves up than we expect and feeling very very anxious about every checkup...

    I've found that the neuropathy in my hands tends to lessen far more than in my feet over time and it has been my main side effect too.

    It sounds as if you've done very well so far and you will get back to feeling in good health.

    Fingers crossed for your appointment. xx

  • Thanks for the reply I really appreciate it and I hope you're doing well as well xx

  • Hi, congratulations on completing your treatment, but nearly all of us feel the same when it's over, feeling alone and nervous about what next! The regular check up trips can wreck your head with what ifs, but in time the anxiety lessens and you begin to relax and learn what the new normal for you will be. I too have neuropathy in hands and legs but that to usually eases as time goes on. I found a structured walking programme helped me with my feet and in months I went from only being able to stagger around at home to being able to walk 6 km in an hour. I try to walk every day and gradually the tingling lessened and also the fatigue. Now I don't allow it to bother me . But that has taken nearly 2 years so be patient with yourself, the body has gone through a lot and you have to allow time to grow stronger. Join your local cancer support centre as they give invaluable support after treatment, especially when it comes to getting our mind in a good place. That , most will agree , is the hardest thing to control, as with every little twinge or tummy upset our mind can take us, to being dead and buried! I hope you continue to make a good recovery and get to be out walking in the sunshine enjoying the fresh air, appreciating how good it is to be alive, along with the rest of the great ladies on this site.😀🚶🏼🏃🏼

  • Hiya, welcome, I am so sorry you lost your son to his cancer, it's an awful disease and totally indiscriminate in its victims. You sound like you have a positive attitude to your diagnosis and have strength to continue with the fight and you have done amazingly well.

    I am over two years in remission, I think that once treatment finishes and you're let off the rollercoaster of seemingly endless hospital appointments and chemo and you're told you're in remission, it feels a little like you're in the wilderness. That's just a normal reaction and it does take a little time to adapt to the new regime.

    I also had my taxol weekly and I had carbo every three weeks, I found that the weekly visits were reassuring as I knew I was OK, and suddenly they're not telling me that but you do get used to it. The follow up checks are a little daunting and they do mess with my head but there's no reason to think they won't be good and fortunately so far they have been fine but scary nonetheless.

    I still have the neuropathy in hands and feet and I too find walking really good for my feet and do around 5 mikes a day on average weather permitting, and knitting is really good for my hands. If I get stressed at all I feel the effects of the neuropathy more so try to stay calm, not always easy when in traffic with crackpots who shouldn't be behind the wheel though 😊.

    You've done really well and long may you continue to do so, your fatigue will gradually lessen over time and you will start to feel more like you again, many people find their neuropathy goes within a year and I hope yours does but if it doesn't then it's not the end of the world, we are really good at adapting. You will start to look positively on the future and you will come to live your new normal life and cherish each day as many of us do. Stay well, if you have any questions at all just ask away, some lovely person here will have the answer for you ❤️Xx Jane

  • Thank you for your reply and the great advice makes me feel much better

    My Christopher did not die from cancer but a senseless car accident caused by a hoon driver 15 years ago I miss him every day

  • I'm so sorry for my assumption 😔. I know how it is to lose a child, I lost a baby at 26 weeks but that was natures way your loss was senseless and wrong on so many levels. Sending big hugs and love ❤️ xx Jane

  • Calluv, You are right. Losing Christopher was the worst thing that could happen. My heart goes out to you for suffering such a devastating loss. I am certain he's in no rush for you to join him. I think he's an ever present sweet spirit rooting you onward! He'd be overjoyed at your excellent response so far. Your results are actually quite wonderful.

    Fear can ruin any good day. I think the actual "fight against cancer" is about maintaining mental strength. None of us knows when our dance will end. NO ONE, not even "healthy" people. When the fear creeps in I think of my son's smiling face as he hugs me and thanks me for raising him to be a kind man with integrity. Just thinking of his gentle smile makes me grateful to be here, right now. Your Chris would want you to be content and present for each moment of your life, enjoying small pleasures like warm cookies, fresh bread, a good book, new socks, clean sheets, home made jam and butterflies. Our lives are a mosaic of memories. As long as we remember and share our joys we can fight off the sorrow. T

  • Wow such kind words brought tears to me eyes

    Thank you xxx

  • Welcome to the site and thank you for sharing your story. It is a sad one isnt it. But now you are finished treatment you should plan a trip away even if for a few days if you can. Sometimes we need this space. The neuropathy is horrible from this regime but in time will get better. Try putting epsom salts in your bath water, it helps relax the muscles and nerves in our bodies. A cup of salts to warm bath water. It helped me I also would soak my feet in a basin of warm water with epsom salts added. Wear comfy shoes or sandals like Heavenly Feet or Rieker. Also it might be a good time to go and speak to your Macmillan advisor and see what services they offer as in counselling, light massage, support groups. I have found finding such support a godsend. You probably feel alone because you dont have the regular visits to the chemo unit but I am sure if you have a particular problem they will still help you out.

  • Welcome to our forum. How your feeling at the minute is perfectly normal. I think most of us have felt that downer following completion of first line treatment. Your not running up and down to the hospital each week so you have more time to think. Once you have HD your 3 month check, you'll hopefully start to settle down but if you find your struggling do seek help from your GP or counselling from a local cancer charity.

    Hope all goes well. Ann xx

  • I thought I was reading about me for a minute.............we have so much in common. I am 65, was diagnosed last July stage 1c2. I have my first three month check up next Tues too! I often get a sore spot in my tummy and worry its something sinister, though its usually after I have tried to do some gardening or lifted something heave, had full hysterectomy in Aug. My heart turned over when I read about your beloved boy, I lost Matthew in 1994 he was almost 15. He walked into my garden and collapsed and died instantly, no medical explanation to this day. Our hearts are broken forever............I know your pain. As you said nothing compares to losing your child, so we can get through this, we will do it for them. Good luck for Tues, love Anne xx

  • Oh Triplets, to lose your child is indescribable pain. I just want to acknowledge your long ago yet ever present loss. My brother died in early adulthood. My parents never recovered from the loss of their only son. Their smiles never shone so brightly again. For you, the delight of your triplets must be energizing. I imagine joy x 3 and bet they're your source of strength and inspiration. For me, I decided during my OC treatment odyssey that no matter what happens I will be OK and so will my family. (They are all grown now.) My emotional housekeeping is complete. Love abounds. I live in the moment. T

  • So sorry for your loss, I believe that Chris gave me the warning and has not been ready for me to join him yet as is probably the case with your boy. Yes, our hearts are broken and only another who has felt or should I say feels that pain can know. This journey however is something else again, best of luck for Tuesday, fingers crossed all round, much love xxxx

  • Hi Judy- i am so sorry for the loss of your son. A mothers worst nightmare to lose a child. I have a similar story to yours. I have finished my chemo last October. The worst feeling was after chemo was done. I only saw the doctor once a month. The anxiety was horrible waiting for my first scan then waiting for the monthly blood results. Now I see the doctor every three months but the anxiety gets bad right before my exam. I want to think I have beaten this but it always there in the back of my mind. Stay strong and believe you have won. Know if it does come back there are new treatments every month coming out. With immunotherapy and PARB research they will find a way for us to live with this beast.

    Sending you strength and support.

    Xx Carol

  • Hi and its great to hear you have done so well. I was diagnosed with stage 3 last year and had ovaries etc removed and peritoneal lining as have had bowel cancer also. Finished treatment in January and blood readings and Ct scan were good. Yes you feel very apprehensive when it comes to follow up appointments, only natural. I came back from a trip to Germany to see my daughter and had been suffering pains in stomach region for 2/3 days, not food related. Went to doctor who was great and sent off a blood sample to check CA125 and CEA for bowel. Came back as normal, what a relief as was convinced it was serious! Yes still have neuropathy, more in feet and toes than fingers which have improved. Epsom salts baths help and I walk a lot as exercise helps me. Think a lot of ladies have neuropathy for some time after chemo and am told it may not go away completely but if I stay free of cancer I am not bothered. I think if you normally have good health that stands you in good stead, it has in my case as I am a walker/golfer. The longer we keep going the better as I think there is so much being done on research side that before long cancer will be a manageable disease. So sorry to hear about your son too. 12 years ago we lost our young grandson who we looked after quite a lot and like you that was probably worse than my two diagnoses of cancer.Hope you continue with the remission and keep positive. x

You may also like...