Nervous

Tomorrow morning we meet with oncology consultant for the treatment plan and hopefully a date for treatment to start. Until tonight I've just wanted to get on with it and tackle this beast head on. Now I'm overcome with nerves about whats coming next. Id got a general idea of what was coming and then the staging changed. I now have a stage 3 to beat into submission!!!

Whatever it is that around the next corner, I will be giving it everything I have. 

Just an inkling as to what's to come might help right now as I think sleep is going to be a long time coming tonight x

 

Given your staging I should think your treatment plan will be chemoradiation.  Mine is 5 chemo,  28 radio &  3 internal radio.  Following on from my appointment with oncologist I had to have a radiotherapy planning CT and kidney function test (due to chemo).  These happened fairly quickly.  Then be prepared for a wait while they plan radiotherapy.  I'll havechad a 4 week wait by the time I start next monday. 

Every individual is different so things may differ but I would think it would be broadly similar.  Some ladies on here have also had a hysterectomy prior to other treatment. 

We are all here to support one another so best of luck for tomorrow.  Keep fighting. 

 

Rachel x

Hi Rachel, 

did you finally manage to clear up the confusion with your staging? All we have been told so far is that surgery isn't possible due to leaving me with stomas. I have assumed it will be a combination of chemo and radio and I guess it's just that tomorrow will hold the answers that's making me nervous. It's also not helped that we have been told that if treatment is in the local hospital, there is no room to have a friend or family member with you for chemo. I'm a indepent person but when I'm low I want the people who I know love and trust around me, and that's not looking likely to be happening.

The 28 radio sounded daunting at first, until I realised it's daily for 5 weeks with a dose of chemo weekly too. 

I just need tomorrow to come, to have the answers and to crack on with kicking butt.

Gloves on and its time to fight xx

Erin 

Hi Erin,  No haven't cleared up staging yet.  I will but either way treatment is the same. It is all pretty daunting to be fair.  Definitely would rather pop a pill to make myself better. 

I too am a strong independent woman but couldn't imagine doing any of this without my hubbie by my side.  I'm meeting with the chemo crew for the first time tomorrow.  Hopefully they won't say the same. 

I hope you managed some sleep last night.  Will be thinking of you today. 

Let us know how you get on. 

Rach x

Hi Erin, Hi Rachel,

Just to let you know that because I live in a very small and remote community, I had to have my chemo-rads a very long way from home with not a soul I knew. Should you find yourself in a similar position I think you will be astonished by the kindness of strangers. I am actually very grateful for the fact that I had to go it all alone and experienced for myself the warmth of human nature. I think it has made me a kinder and more thoughtful person.

I want to wish you both all the very best for your forthcoming treatments. Remember to take the anti-nausea pills and get all the rest you want.

Keep us in the loop about how you are getting along, we are all here for you.

Very best wishes both

Tivoli

xxxxx

Hi ladies and thank you for your replies. 

The appointment was ok and we now have 'the plan ' 5 weeks radio, 5 chemo and 3 brachy, so pretty much as you said Rachel. We are thinking this is the standard line of attack. We have the CT for planning next Monday and to have started treatment by the 7th July.  They are right when they say once the ball starts rolling, things move quickly. 

This week is completly hospital filled with a blood transfusion tomorrow and PET scan on weds. The transfusion is on the chemo unit so I'm treating it as a test run as to what's next. 

From today's experience alone I agree with you Tivoli, from the time we walked in to the time we left, people could not have been nicer, kinder or more reassuring. It is as you say at times like this we really experience the true human kindness that is out there and even for me, it restored my faith in people. Even in the waiting room, where everyone has their own battle to fight.

I'm glad I know the how, and what's and am looking forward to the when as I need (for my sanity) to crack on with this now.

Thank you for the good wishes all. Rachel let us know how you get on next week, I will be just behind you in my treatment.

keep strong 

erin 

 

Hi erin

just wanted to say I totally admire your fighting spirit along with Rachel. My nurse has me convinced I'm going to die soon (me prob reading so much into every word) but feeling very very dark.  I hope whatever stage I get it is fightable and I can still be here for the people I love and to hopefully start dishing out some support on here instead of being a taker!! :) 

can I ask are people sometimes given a stage and treatment after biopsy with a pet and ct to follow? I've been told she will call with biopsy but will get pet and mri soon. Dreading the call and not sure if sometimes they just start treatment straight away.

if anyone can offer a smile or light of Hope that would help as I'm typing in a dark room unable to sleep and feeling very alone.

 

thanks ladies

 

kimmy 

Hey,

You are so going to fight this! Your nurse was an idiot and spoke completely out of turn, especially given the information she had in front of her (not a lot!). 

I can only speak from my experience but when I had my biopsy and a good old look around under General anaesthetic my consultant afterwards said she thought it was stage 3 (before results). That was a provisional staging. It's not biopsy that stages- it tells them what type of tumour they are dealing with. Official staging from a big team of specialists including an oncologist happens after MRI and PET. Only after these can they know what they are truly dealing with. I was restaged to a 2b after this.

Treatment doesn't start straight away after this. It can't. There is a lot of planning that goes in to it. I've waited 4 weeks for mine to start. Think this is also because I had surgery to move ovaries out of radiation field and needed a little time to heal. If you are early stages ie stage 1/2a I believe surgery is the preferred option so without the need for numerous other test this is probably a much quicker turn around time.

However if you need to go the same route as me then other investigations are required. I had aCT with contrast to plan radiotherapy. Also had kidney function testing to prepare for chemo. They use a slightly radioactive solution for this so it can't be carried out within 7 days of the contrast from CT. Have had numerous other sets of routine bloods which I assume are normal as haven't been told otherwise. As I say I've had 4 week wait to begin from seeing oncologist (3from planning CT) but Erin has a much shorter wait so everywhere is different.

Try not to drive yourself completely nuts with worry. I don't have an absolute clarity with staging as oncologist has said one thing and written it in my notes (2b) then dictated letter to my GP as 3b. Either way she most certainly told us that the treatment they were planning for me is 'curative'. So I'm hanging my hat on that!

Big hugs and super amounts of positivity.

Rach xx

Hi,

This fighting spirit has taken a while to surface. I think we have all been in that dark place, some more than others but it's part of this process. I can also relate to the nurse not wording things in the best way. On the day I had cc confirmed, she went on to mention palliative care which having not so long ago lost a family member to a stage 4 brain tumour, was not what I wanted to hear. Only later did she explain the true definition of the word (  being to to treat the symptoms too ) followed by me letting go of the breathe I didn't know I was even holding. 

Rachel has had a different journey to me, I had the biopsy, got the diagnosis and then had the mri and only today the pet scan. I have been waiting about a month for the treatment plan but have had other things done during this wait. I was supposed to have my pet scan before Mondays appointment with the consultant,  but with 3 children, couldn't make the appointment over a 200 mile round trip away and juggle everything else So had it done today, much closer to home. If any changes are needed in the plan then they will just adjust it. 

Having some clarity on what I am facing and fighting helped me to be positive again and hopefully will do the same with you. Every hospital has their differences. 

Stay strong and be positive xx

Thanks Erin.

just feeling very abandoned and alone. They basically said after the colp that they were very concerned about how my cervix looked and that from how the things behaves they are certain it's Cancer.  I'm terrified as it must be bad if they can tell straight away and they are using terms like very concearned. I just feel like I have no hope and it's their way of telling me I'm going to die. Plus if they are so concerned I thought I would have heard from them by now (I know it's only been two days! ) but no one has told me anything.

 

just feel feel scared and alone and that they know I'm knackered so not really in a hurry. I know it's being negative but I feel so bleak.

 

 

kimmy

You aren't alone, and they will be doing everything they can to make the best plan for you. At the end of my first gynae appointment, the Dr just cane out with cancer doesn't just appear it takes time!!!  What a loverly way to have the idea put in your head. The fact that they haven't told you yet doesn't make it worse news, it maybe and probably is that they want to do further tests and scans to ensure that they get it right. Stagings change both ways. 

Don't worry that it's been 2 days and you've not heard anything, I waited 10 days after the call from the nurse, it takes time for the results to come back. I was told it could be up to 3 weeks before we had an answer. It wasn't until we finally went back that they said had I insisted they would have said over the phone...although it's not their preferred method here. 

There isn't anything I can say that will stop you from being scared but we are all here to try and help each other and you are most definitely not alone although it may well feel like it.  Have a good look through the site and back stories, they have helped me no end to find the hope and positivity. This phase will pass, you will get to the next and find reason to be positive and in the mean time we will try our best to help you through xx

kimmy, My tumour was visible at GP & certainly cc at that point and I have been given a positive prognosis. It's hard not to think the worst but please try.

Erin, Blimey a 200 mile round trip that's quite something. Makes me appreciate the fact that my local cancer centre is 15 minutes away. Must be a logistical nightmare with the children as well.

Xx

Thanks Rachel and erin

i guess not knowing the procedure and timescales makes me read into everything. I just wish I could be positive as my darkness is hurting my boyfriend but I just feel lost and unable to cope. I have felt glands in my back now so have effectively written myself off. I feel horrible moaning esp when everyone else is so strong.

Erin and Rachel - I'm going to be having the same treatment as you. Did the possible side effects and potential complications scare the hell out of you like they did me?!

Kimmy - wish I could say something to make it better but it is all cr*p! 

After my diagnosis I had pains in places that weren't there before...I am sure it is psychological

....stupid iPad doesn't let me comment properly!

do not apologise for moaning

Hi sweet pea

 

was thinking about u, how did today go? Are u feeling a bit better? 

 

Kimmy

Thanks Kimmy- I've put it in a new post xx

 

how are you today?x

Hi again.

Kimmy,  we have all been there and moaned, no apology needed. I still panic now when I hurt somewhere new or unexpectedly, it's human instinct to worry. 

Sweetpea,  I'm not as concerned about the side effects and complications as I am about the spinal anaesthetic that I will apparently have for the brachytherapy.  The thought of that terrifies me having never had anything other more than a local In my life. 

Bloody hell is that standard?! Can you not have a general?!