Hit another hurdle! Need some support from you lovely ladies!

[Newbery3]

Just got my kidney function blood test done and while I was at the hospital the consultant said she'd like to see me quickly as she was away on my 1st visit and i had some unanswered questions, long story short they have changed my diagnosis after 10weeks waiting to start any kind of treatment to stage 4 from 3a hgs, I'm starting chemo Monday and was positive and ready and now I'm so upset again! It's turns out that i have 3 lymph nodes in my diaphragm next to my heart and she mentioned avastin bit thinks we should go with just chemo 1st as avastin slows recovery during chemo. And hopefully get full debunking but not sure when! Any of you had thus knock back last minute? I need a big positive push back of my backside!!! I'm generally a happy go lucky person but with every appointment it's getting ripped away from me xxx

[wendydee]

It’s so hard to get used to each new bit of info but thank goodness your oncologist is on the ball and prepared to adjust treatments to suit you. I’m sure that the picture for the medical team is getting clearer with each new piece of information that they get from your tests. That’s why the plan keeps evolving. I know it’s hard to get your head around, but just have the thought that they’re adapting everything to your current needs and they’re going to pull out all the stops to do whatever they can to get you to NEDland. Just try to plan a few diversions…..try not to dwell on things, if you can divert your mind with a little treat. I won’t say ‘stay strong’ because I don’t like the thought that the opposite is ‘weak’. Just try to stay diverted and things will settle. Sending you a big cyberhug (((xxx)))

[Newbery3 in reply to wendydee]

Thank you again Wendy! 💓 just want a good news day! X

[MH500]

Oh I can completely understand that you thought that you knew the plan and stage and then it changes. You are at a very difficult part of the process but once the plan is sorted and treatment started you will feel better.

Like Wendy says, try to not over dwell on the numbers. We are all here to support one another. Marian xx

[Newbery3 in reply to MH500]

Thank you Marian, just need a good news appointment next! X

[MH500 in reply to Newbery3]

You certainly deserve one. We are mostly all late stage but chemo works well for us along with surgery. You can do it 💪x

[Litchick]

Unfortunately OC is unpredictable and it is tough to have to deal with new information, changes to treatment plans and the anxiety created. Try to remember the one thing that is predictable in all this, is that this forum is here with a whole bunch of teal sisters ready to listen, share experiences and if we can pass on information we have learnt living with this flipping disease.

We are all here to give and receive support and encouragement, to share good and disappointing news and yes, to send out love and get it back in spadefuls .

So, I’m sending you best wishes for Monday and a great big Yorkshire hug too.

Jan.xx

[Newbery3 in reply to Litchick]

Thanks Jan, hug 🫂 taken xx

[Lyndy]

Hello, I think it’s easy to get too hung up on stages and even where the cancer is. It’s advanced stage (that basically means that it has escaped from its original location). Having anything ‘near your heart’ sounds dramatic but actually, the likelihood is that all these sites will respond to chemo… that’s why it’s such a good treatment.

I had my surgery after 4 chemos…the cancer had literally been wound around my organs inside but chemo shrank it right back, making my surgery ‘optimal’.

As I have said, by the end of my first line of treatment, no cancer was left.

Take a deep breath, your job now is to get into that chemo chair and to take real care of yourself as you go through the cycle.

Take it one day at a time, try not to project forward if you can.

Very best of luck with it, don’t forget most of us have done it.. so if you have any questions, just ask xx

[Newbery3 in reply to Lyndy]

Lyndy thank you so much ❤️ yes I think I'm over thinking as yesterday I was fulm of beans and hope! I'm going g to get a good sleep and get back on my mission tomorrow 😌 tonight I am going to eat all my fruit and nut bar though as I've been trying to be healthy!!! X

[Jayniiee]

Hi Newbery, I'm sorry you're going through all this.. The waiting for treatment to start is the worst isn't it. I had an original diagnosis of Hgs 3b, including abnormal looking lymph nodes but that was changed to 4b after surgery I remember being so upset that they had upped the staging.. Five months later though there is no visible evidence of disease and I'm now on maintenance treatment and the op I had in Jan feels like it was years ago. When I had chemo I would visualise the cancer cells being zapped and I'd like to think it helped.. Sending you positive vibes for your treatment xx

[Newbery3]

I will try the same meditation and fight fight fight!!! Thank you! No doubt I'll be after more advice soon xxx

[Realistic]

Your understandably down at the moment its a shock too anyone, but like my Teal sisters have told you there is light at the end of the tunnel.I was devastated when l first got dignosed.

But nearly 5 years on l lead a normal life l am NED after chemo not easy to go through but worth the end results . I know its not gone but its being managed and l can get on with my life

thankfully. There are times when things seem slow but its because all the experts get there heads together for the best treatment for you

Keep yourself well, try and stay positive eat well

And try not to worry thats not easy l know but you can fight this. We've all been through what your going through and really know how your feeling. So l send my love & big hugs to you.

SheilaFxxx

[Newbery3 in reply to Realistic]

🫂 hugs always needed xxx thanks

[Summergold2]

Hang in there Newberry! They did not add Avastin to my carbo/platinum regime until 2nd chemo session as they wanted to make sure I had sufficiently healed from a 6 hour surgery. Started chemo 5 weeks after surgery and definitely still was healing. After surgery kidneys were not functioning properly for one day but massive saline got them straightened out. Every body and makeup is different! Keep a positive outlook as much as possible! It is not expected everyday however as you venture down this road you will be amazed and so will others of your strength and resilience! Was diagnosed at stage 3c and less than a year reoccurred another round of chemo and remission again now on lynparza and enjoying life ! Went to Galapagos, Sicily and now in Portugal! Going to Ireland in September ! Live strong fight hard never give up! Hugs Debbie from San Diego

[Newbery3 in reply to Summergold2]

Debbie that's great news to hear your travelling! That's exactly what I want to do when on my feet!! I only married my soul mate last July! We are so looking forward to a future together xxx enjoy xxx

[Newbery3 in reply to Newbery3]

I haven't had surgery yet so they are holding the avastin back til hopefully get that done as it doesn't help healing the oncologist said xx

[Summergold2 in reply to Newbery3]

Yes my long term man of 13 years married me the day after I was diagnosed he is the best! Good luck !

[Mysticmeg123]

I sympathise greatly with how you are feeling. My original diagnosis was stage 2 and then when the tumor tests came back they said it's 3. I was really upset but I realised after speaking to my oncologist that the treatment plan would be the same regardless of the staging and thank fully, I have responded well to the chemo and now on 3 weekly Avastin and Olaparib. so far so good. I decided to ignore the number because I know that obsessing about it will make me lose my resolve to beat this horrible monster. Please keep positive. There is so much out there to help deal with this disease and it sounds like your oncologist is being pro-active to get the best outcome for you. Try not to focus on the staging and concentrate on getting the treatment underway and keeping yourself motivated and healthy throughout. It wreaks havoc on your body so don't let it do the same to your mind. As Wendydee says, the picture for your medical team is getting clearer with new information. They've got you. Trust in their knowledge and experience. Wishing so much positivity x

[Newbery3 in reply to Mysticmeg123]

Yes I've decided to not tell my grown up children of the change as it will cause a fuss and upset and the treatment is so far the same! I'm focusing on getting ready and following my original plan of getting this sorted as soon as then just try and live as normal new normal will be xxx

[Mysticmeg123 in reply to Newbery3]

That is exactly what I did. I kept the staging to myself and just got on with it! Well done. You are already showing a fighting spirit. YOU'VE SO GOT THIS !!!