Rollercoaster 🎢 again!

[Newbery3]

Had my 1st meeting about starting chemo today so was happy to get a step closer! The oncologist told me that I'm still stage 3a hgs but they had read in 1 letter that a lymph was flagged up next to my heart!! 1st I've heard this as I'd had womb biopsy cervix and guided ct on lymph plus ct scan 6weeks ago and was told that these are clear, today mind blown again! Anyway need a kidney function blood test and was told another 2 weeks before I can start chemo. I'm positive but I'm starting to struggle as I'd like a clear plan and picture! Ladies end of rant ❤🙏🤷‍♀️

[Jacky5]

I had paracardiac lymph node flagged up on my scan at the beginning but by the time I was rescanned after 3 doses of chemo it was back to normal. I was told the node showing up had probably not been significant and more likely an inflammatory reaction .

Very pleased that you'll soon be starting the treatment. We just want to get on with it don't we?

All the very best to you.

Liz x

[Newbery3 in reply to Jacky5]

Aww liz that's comforting to hear as I freaked out a bit, I think this is torture waiting to start thanks Rhian x

[Loorunner]

I had a paramedic lymph node show up from the start but 6 chemos and debulking surgery later it's all looking clear. Wishing you all the very best on your treatment

[Newbery3 in reply to Loorunner]

Thanks, everything I go for an appointment I hear something new and it's hard when your trying to to up beat! And I had that ct with dye 5weeks ago so I don't understand why now they tell me. Anyway you and liz above have both said the same thing so makes me relax a bit xx Rhian

[delia2]

I had a lymph node elsewhere very enlarged after my first round of chemo and it turned out not to be cancerous. Sending lots of positive vibes and hugs!

[Newbery3 in reply to delia2]

Thanks 🤞 I think I'm over anxious 😟 that's what everyone is telling me but it's so hard not to be! X

[Lyndy in reply to Newbery3]

Haha! Great isn’t it when people who haven’t been in this situation tell you that you are being over anxious!! No you are not. You are being keen to survive ❤️Having said that, what you are experiencing is pretty typical… incomplete information, bad communication and uncertainty.

But never fear, once the NHS gets into gear it will be magnificent and you will get the care you need.

I have learned to question and check all the time, just to make sure they are telling me everything. I found out I was stage 4 by reading it on my notes upside down when the oncologist left the room!

It does become calmer once treatment is underway and you will get to that place very soon xx

[Newbery3 in reply to Lyndy]

You just made me cry but a good cry xxx sometimes i think I'm moaning xxx

[SUE7777 in reply to Newbery3]

You so are not, Lyndy is great and it's quite true that people who are not in our situation have no idea what this like. Take care, question everything and all the best Sue xx

[Tillymint61 in reply to Newbery3]

In this group nothing is ever thought of, by any member,as 'just moaning ' because we each can in part relate to almost any post. If helps to come in and offload that is so much better for you own wellbeing. Xxx

[Newbery3 in reply to Tillymint61]

Thank you xxx

[wendydee in reply to Newbery3]

No over anxiety at all. It’s all new territory and you’re trying to make sense of this. It’s a huge shock to your system. That’s what’s good about this group. You can say whatever you want to say without unnecessarily worrying your friends and family….and we all understand.

[wendydee]

I’m sure we can totally understand you wanting to get on with it….I had a two week wait which seemed the longest 2 weeks of my life. It’s good that others have had similar experiences that have worked out ok. I have no experience of this at all so can only say, ‘hang on in there, keep busy, and breathe…….’ You’ll get there. 🤗

[Newbery3]

Just goy a call from the chemo unit and starting 13th June! Well I'm going to make the most of next 2 weeks xxx thank you all so much xxx

[Newstart22]

Oh dear waiting is the worst. Hope you get a clear plan soon xx

[Newbery3 in reply to Newstart22]

How are you feeling after you op?? Hope your getting spoilt xxx

[Caleda4]

Hi I just wanted to say good luck with your chemo. Like Lyndy, I question everything, even to the point when told about the chemo they think is suitable,and ask why do they think this will work. I am stage 4 HGS fallopian tube cancer. At present I am on my 3rd lot of chemo carbo/caelyx, and my Oncologist said it has 70% chance of working. This is my seventh year since diagnosis, and I am 77. I am fairly fit fortunately as I have no other problems. If you eat a good diet and try to stay fit I am sure it helps. I walk regularly even short distance is better than nothing. Take care.x

[Newbery3 in reply to Caleda4]

That's an encouraging message too 😊7th year is brilliant 👏 I'm 51 and I walk with my 2 jack Russell's everyday (no choice!) 😅 I'm looking into a healthier diet but lately been craving sweet things, thank you for giving hope xxx

[Jayniiee]

Hi Newbery. My lymph node next to the heart amongst others looked abnormal at my diagnosis of stage 3c hgs. After treatment, seven months later im now NED. You will get there. The waiting for everything to get going with treatment is the worst isn't it. Best of luck with it all. Sending you positive vibes x

[Newbery3 in reply to Jayniiee]

Honestly don't know what I'd do without this group ❤️ it's the only good thing to come out of any of this!! Thanks ☺️ Rhian xxx

[thejoannabell]

The lack of a clear plan/picture is one of the hardest things I find to deal with. During frontline and even treatment for a recurrence was strangely easier than just waiting. Hang in there!

[Newbery3 in reply to thejoannabell]

100% I think the waiting is cruel, 2 more weeks before I get started and I can even feel growth! The jubilee comes 1st though🤷‍♀️ anyway filling my time with walking and seeing my loved 1s at a distance still but ready to go!! X

[Mirrorplace]

That's it isn't it when you're ready to go, you know what's planned, you just want to get on with it. I was told I had fluid near my diaphragm before chemo and was told the chemo would 'mop it up'. I'm so pleased to say that is exactly what happened. I'm happy for you you now have that date set and you will be well on your way to getting it sorted. Wishing you well with your treatment, big hugs. Enjoy your jubilee plans walks and family get togethers in the meantime Xx

[Newbery3 in reply to Mirrorplace]

Thank you x