My story and waiting is driving me crazy

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Hi everyone

My name is Karen and my journey began almost a year ago. I had my gall bladder removed back in August and they noticed a "cyst" on my ovaries. Went for some scans still not that concerned as many women have them, then saw the consultant and my life changed. It turned out I had cervical, ovarian and vulva cancer. I had symptoms prior but I though I was just perimenopausal. Due to it being a "complex" and "interesting" case it was January before any treatment took place.

In Jan, they operated on the vulva and ovarian cancer and removed this. Procedure went well but then I ended up with pneumonia and then they had to put stents in my kidneys as they weren't functioning properly due to the mass sqashing them. I ended up spending practically the whole of Jan in hospital. 

At the end of Feb, they finally started dealing with the cervical cancer. The wait for this was hard again as this was the one that was stage 4. Orignally my next treatment was going to be chemo radiotherapy, but due to growth before treatment I had to have 6 rounds of chemo which finished in June. This has shrunk the tumour by half but then at the last consult this week they mentioned a lymph node issue, although very small at the moment still was something else. They said it could have been there from the beginning but was unseen due to the whole area being completed filled with cancer. 

The next stage is going to be the chemo radiotherapy but I am playing a waiting game again of when that treatment will start. It looks like August but no real dates yet. I have been positive throughout, even when I ended up neutropenic sepsis after catching a cold in May, but I am really struggling emotionally the last couple of weeks. I break down in tears over the silliest things, this may be partially due to the enforced menopause, but I am a person who nears structure and not having a clear plan is really messing with my head. The fatigue is really frustrating, and you just feel like a burden on the people around me. I have to ask to go anywhere as I am no longer driving due to pain meds and I don't get anywhere on my own as I struggle with dizziness etc. I am sure I will snap out 9f it once the next stage begins but it is tough going.

  • Hi  and welcome to our group.

    I’m saddened to read your story-you have been through a huge amount in a very short time.

    You say your cervical cancer is stage 4, so I’m assuming that is because of spread to the other areas rather than you having 3 separate primary cancers? The waiting for treatment for this must be really upsetting but there is a lot of planning and testing before treatment actually starts, though the wait is a tough one. You’ve had a lot of previous treatment/surgery so maybe this is impacting on things? Typically you need some recovery time between procedures to let your body heal before the next stage. 

    Can you share with us what chemo regime you were on before? Will it be a different chemo next time? Typically Cisplatin chemo is given concurrently with radiotherapy, and many of us have been through this treatment. It would be really helpful, if you can, to complete the details on your profile so that we can see what treatment you have had. This saves you repeating yourself and having lots of questions asked. 

    I hope you’ll find out soon about the next stage of treatment, and please feel free to seek support in the group. I’m sorry to ask so many questions, but it helps to give a clearer idea of where things are for you.

    Sarah xx

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  • I have updated my profile, but I was on paclitaxel and carbonatin last time, 6 sessions every 21 days and I will be on cisplatin next time alongside the radiotherapy. I appreciate there is planning involved and my body needs to recover but if that was set out clearer in the 1st place it might not be so bad. Also my cancer went fro  stage 3 to 4 due to the initial wait so I think I am more sensitive about the waiting in between. X

  • We have used humour quite a bit through this journey, especially when it came to the vulvavectomy ( a designer vagina for free). Also looking for the benefits help, like losing my hair, its been good with this heat, quick when you get out the shower, no shaving of the legs etc. I have just been having a couple of down weeks and I am sure I will perk up again. It is difficult as my partner really struggles when I am emotional  he can't cope with it. I think he likes to pretend it is not happening most of the time. I know I need to think of myself but I have always been the strong, protector type who looked after everyone else so it is hard when roles are reversed x

  • Hi  

    Thank you for your update-you’ve been through so much. I can understand the feelings about the endless waiting and I think there’s a huge lack of “joined upness”in the nhs, coupled with a lack of communication with us as patients which only serves to increase our stress. I’m going through similar problems currently with quite a serious issue unconnected to my cancer where I am the one chasing, and trying to organise blood tests prior to a meeting with my consultant. Nobody has said I need the blood tests but I know I do, otherwise the meeting will be pointless without those results to see if I go forward with gall bladder removal.

    It must be devastating to have your cancer stage upgraded due to delays-that must be a real body blow to accept. Mine spread too, in a very short time when I was in that waiting limbo which I found difficult to cope with.

    Many of us in the group have experience of the chemoradiation regime, so will be happy to help from our own experience if you have questions going forward. 

    It’s very difficult to go from being strong and resilient to being vulnerable and needing help physically and emotionally. I think I have come to accept that over the last 3 years as I don’t have any choice, but it’s not easy. I have huge limitations on my life now, but do my best to think of what I can do, rather than what I can’t. And humour plays a large part-you need it living with two unpredictable stomas! 

    Sarah xx

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    Cervical Cancer Forum

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm