In Limbo.........

I attended an oncology appointment today, just the usual routine one after a CT scan for abdominal bloating. I went expecting, well I don't really know what I was expecting, but certainly not what I was told. I am stunned and currently can't think straight.

My cancer has returned. Less than 12 months after Chemo and 6 months after Radiotherapy and now I have to go through Chemo all over again. For another 6 months.

I have inflammation of the Ureter (tube that leads from the Kidney to the bladder). I've been told it been caught early enough but I am now placed in the incurable club. I really don't know what to think, how to feel or what to expect. I just feel numb, as though it's not real. I just feel it will get me eventually (though not without a fight).

I was due to fly to New Zealand next weekend to spend Christmas with my hubby's daughter and her partner. Now I have to cancel and disappoint a lot of people. Still, I'm sure they'd only want what's best for me.

Sue xx

  • Sue , So sorry to hear your news. Sending a virtual cuppa and big hug. What blooming awful timing for you with your big trip.  The future looks like it's come crashing down around you at the moment but I hope  in time you will feel that you can regain some hope and joy from your life despite this blow.  Nan x 

  • Hi NorthernNana

    I'm in the process of cancelling everything and informing family and friends. I'm awaiting a letter to send to my insurance company to make sure my "holiday" is covered. Hopefully they don't play up. Fingers crossed that it's not, well you know what I mean.

  • I’m so sorry that you are going through yet more difficult times. You’re in my thoughts. The unfairness of it all with holidays coming up just feels brutal and heartbreaking. I’m so sorry this has happened to you. Your family will understand and they love you and just want what’s best for you. Time to be kind to yourself and do what’s needed for you.

    Hope you don’t mind me asking but will you have other friends/family to spend Christmas with? X

  • Hello Sue,

    I feel so badly for you having this news at this particular time. This is plain unjust and I can understand you must feel at a total loss. Your family will be disappointed, however, they'll just want to see you well again. Just know that you're in my thoughts and prayers.

    Everyone here will support you through the coming days.

    love and huge hug,

    Jan xx

  • BondGirl, I'm so sorry I confused your name.

    Extra hugs!

    Jan

  • Dear Sue I’m so sorry to hear your news. What a dreadful blow. Hearing the words treatable but not curable takes some processing. I’m jsorry you’re having to put your plans on hold but I’m sure your family will understand. Gentle hugs. You are in my thoughts and prayers xx

  • Thank you to all who replied,

    I do have other family, so I won't be on my own thankfully. 

    I was told postpone the trip and go next year when all is "clear". Then I was told I will always be "treated" in one way or another, that I'm incurable but treatable. I don't think there is ever a good time to hear news like this. I was stunned when they told me. I'd had CT scan at the end of August and by the time I saw my Oncologist I'd developed a pain on my right side, roughly where your appendix is. She decided to send more for another CT and this one came back with a slight thickening of the tube. I do consider myself fortunate that it's been caught so early and I do not know whether it's "Serous" returning or a new one. There's not enough material to do a biopsy. 

    I'm in the waiting game again for a schedule etc.

    Will keep you all up to date.

    Love Sue xx

  • I'm so sorry to hear your news, Sue. Hang on to that word "treatable" and remember that everyone in the group here will be supporting you every step of the way.  We're all thinking of you and sending a big collective hug.

    Gillxxx

  • Hi Sue, yes mine has decided to take up home in my right lung ! Endometrial Cancer of the Womb in my lung. I was admitted to hospital on the 31st October , 2.5 litres of fluid drained off my lung. Went in for Lung biopsy on the 25th November, got my diagnosis 2nd December saw the team on the 3rd and starting 6 rounds of chemo on Tuesday. When I have finished that I will be put on hormone therapy for the rest of my life. I decided I only wanted to know if this was treatable, I don't want a prognosis or a grade or stage. Head in sand working for me at the moment ! I too am hanging on to the word treatable, that's all we can do. Like you I think I am in a state of utter shock and disbelief after going through hard treatments first time around. We can do this together and with the support of everyone here.

    You take good care of yourself, and so sorry that you have had this happen to you.

    Biggest of hugs,

    LC

    XX

  • Hi sue bondgirl, sorry I'm late into this thread. I too was saddened to hear this news. What on earth is happening with this disease barging in and ruining people's plans in what should be the run up to the happiest time of the year. I mean there's so many people on this site recently that have been devastated, little critter, daloni, to name a couple but there's many more. A huge collective prayer is needed I think to put this damn disease in its place and tell it where to go. I agree that your family would only want what is best for you and will understand the reasons behind your cancellations but it is disappointing for everybody especially you because there will be no let up from it. What a horrible Christmas gift although I'm pleased your team is on the ball and they've caught it early and it can be treated. You will be in my thoughts and prayers and I hope your pain goes soon. Hugs and love coming your way. Love lamb.xx

  • Hi LC, 

    So sorry to read your news. It's devastating when you get told it's back, I just want the world to stop and let me process everything. What Chemo are you having? I've been told I will have Carboplatin (again) and Liposomal doxorubicin and they tell me it's not as bad Taxol/Carbo combination. That remains to be seen. I asked if I was going to die and the registrar laughed "heavens No, you are not terminal" Nice that he could see the funny side of it.

    Sending Hugs to you xx

  • HI Lamb,

    I don't think there is ever a good time to hear this kind of news, Christmas is just a more poignant time. My 'once in a life time trip' has been postponed until next year, providing all goes well. 

    My team were massively on the ball, there's not enough to take a biopsy from. I suppose they see this know of thing every day and know what to look for. Although I have doubts as to whether the pain I have is related to the cancer they've found. I was told "you have 2 kidneys and can function with one if needs be". So, if chemo fails, I have more major surgery to remove my kidney and all it's attachments. 

    Thanks for the hugs and love

    Sue x

  • Oh Bondgirl that has made me titter ! yes the same as mine re chemo, she wouldn't have given it to me and would have gone straight to the hormone treatment, but the fact that my breathing is atrocious sort of made it a no brainer. I can't have the Taxol as I had an anaphylactic shock to it, not a pleasant experience. 

    We will get there, wherever there might be, I haven't asked about dying, I will wait till I am told that hopefully in at least another  20 years or so ? 

    Take great care of you, will be thinking about you, when does your chemo start ? 

    LC
    XX

  • Hi LC,

    Not had a schedule yet but I've been told I will have one before Christmas. Taxol is a dreadful chemo. I had a slight allergic reaction and my oncologist upped the steroids. I took 8 before I went for a session, on a drip whilst I was there, and then for 3 days afterwards. I did nothing but cry for a week after taking them. I hope it's not as bad this time. Will post when I get my schedule.

    Take care

    Sue xx

  • Hi bondgirl61, I recurred 6 months after hysterectomy I was Stage 1 a grade 1.  I feel for you having the recurrence diagnosis after such a short time.  I had brachy as mine was at the vagina vault. Hope all the best for you. XxDawn

  • Hi Chickplc and Bondgirl61

    I'm so sorry for jumping on this thread Chickpla, but could I ask if you experienced any symptoms to suggest that your cancer had returned?  The reason I ask is that I was Grade 2, Stage 1B and had brachytherapy x3 sessions, surgery on 17 September.  At no point was I told what signs of recurrence to look for. TIA.

  • Hi Zigoin123

    Yes I began with a yellowish/greenish discharge and I telephoned My CNS she said that it could be an infection however 2 days later I had a bleed, not a spot a watery bleed. My CNS arranged for me to see my Consultant, she felt a tiny nodule at the top of my Vagina.  She couldn't see it. A doctor told me that they could see Cancer in the Vagina but mine couldn't be seen.  It was taken away via the biopsy it was 5mm.  Hope this helps. Dawn xx

  • I had a recurrence in a paraortic lymph node after 3 years picked up on scan. I didn't have any symptoms. It was removed by surgery. At hysterectomy the cancer had spread to a single pelvic lymph node and I had regular scans in case the cancer recurred to where the node was. They were very surprised it came back in a different place entirely.