Newbie 7.7.22

Hi,

Really sorry you find yourself here, but hoping that connecting with others on this site will help you realise you’re not on this journey alone.

I’ve been on my OC journey for 18 months now, but can still remember and relate to how tough the waiting for next steps, and battling the unknown, was in the early days.

Just a few words of advice I’d like to offer in that respect:

1) What I found hardest about the waiting was that everything felt out of my control - so I found it helped to focus on the things I could control, like trying to eat well, getting a good balance between exercise and rest, and generally getting myself in the best shape I could be for the surgery and chemo to come.

2) It’s normal to worry about the cancer getting worse while you’re waiting for things to happen, but in reality none of us ever knows how long we’ve lived with it already, so the most important things are to note and try to manage whatever symptoms you might have, and to fill your days as best you can to make the time go faster.

2) It’s also important not to be afraid to chase up appointments and results if things are taking longer than the timelines you’ve been promised.

I hope you’re able to start your chemo soon, and it’d be great to hear how you’re getting on if you feel like posting here again.

Love and hugs, Bxx

Hi Fatface, I totally understand your frustration and concern. It took two months between my initial scan and start of chemo, each step in the process seemed to take an age. I got really uncomfortable/ unwell with ascites and symptoms and like you was worried about spread. 
I’ve had one chemo and it has relieved my symptoms and resolved the ascites so apart from a few days feeling rough it has actually made me feel better. Next chemo is this Weds. 

Hang on in there I know it is torture, like B.positive says don’t be afraid to chase. I hope that when you have your chemo your symptoms improve.  
Take care and good luck xx

Thank you for your advice and encouragement, B. I hope you are now at a point where your OC is under control and the future brighter for you. I am unable to do much at the moment, due to the tiredness and discomfort, but at least the pain and nausea are being managed by drugs now. I guess I'm just having a lesson of a lifetime in exercising patience. Lol.

If you don't mind me asking, where are you now on your journey?  If you'd rather not say, I won't be offended, but wish you all the best anyway.

Love and hugs back,

Fatface xx

Hi Louise,

It helps to know that my situation is normal, and now understand what is happening to my tummy, and the symptoms of ascites; I didn't know what this was and nobody has explained to me that this is what is causing a lot of my discomfort, nausea etc. They just said that I had a build up of fluid.  It seems to me that, although without the NHS I would probably only be starting the diagnostic process now (and am extremely grateful for being invited to take part in the Galleri Trial), there has been precious little info given to me about what to expect.  I thought my IBS had taken a turn for the worse until I spoke to a Macmillan nurse and started looking at the site.

I'm also not great at taking in information when it's stuff that I'm not familiar with, so I think that I need to do some more reading.  I am glad to hear that the chemo has helped with your symptoms and hope that your next session improves things again in the long run.  I am dreading it, but it can't come soon enough.  Just to be able to eat and enjoy a meal again would be wonderful, but I know that it will take time.

I will be thinking of you tomorrow.  Let me know how you got on when you feel able.  Take care.

Love and hugs

Fatface xx

Hi Fatface,

Really glad you’re getting some relief from the meds now - and keeping everything crossed that you’ll see even more improvement once you start your chemo .

I was unfortunate enough to be one of those whose OC recurs within 3 months of the first round of treatment (surgery then chemo), and it was hard at first getting my head around it then being treatable rather than curable. But there are so many treatment options out there,  and all us patients and our cancers are different, so we just have to keep fighting with every new “weapon” that’s offered to us.

I’ve managed to retain a positive attitude (mostly) throughout my journey, and for now anyway have struck a deal with my “unwelcome guest”…..we can share the same body, but I’m still in charge!!

My current treatment regime seems to have stabilised things for now - so I’m just getting on with living.

All the best to you,

Love ️ Bxx

Hi B,

I hope this is a good day for you.  My cancer is also incurable, but hopefully treatable.  As you say, it is a journey, and not an easy one, but one worth undertaking to fight for the future.  The tablets seem to help through the day, but the ascites gets really bad at night, so I'm barely sleeping and it's really painful to poo; have you experienced this, and if so, any ideas? Can't seem to get through to my onc nurse, but will google it on the offchance that there is some info out there.  

I don't expect a quick reply, as I know you have chemo today and am thinking of you and praying for you. Let me know how you get on.

Love

Fatface xx

Hi again, B.

Apologies, I got you mixed up with someone who is undergoing chemo today (I'm not exactly running on all 4 at the moment. Lol), but do wish you all the best and am grateful for your replies.

Love

Fatface xx

Lol - no problem Fatface, and thanks for your good wishes.

In terms of getting to sleep at night, the only thing I can suggest from my own experience that might make you more comfortable is to try extra pillows or a wedge under your existing ones. Sleeping more upright can make you feel less like the bloating is rising up into your chest (took me a while to get used to as I’m normally a side-sleeper, but definitely helped).

All the best, and keep in touch,

Bxx

Hi again B,

Thanks for your message, I really appreciate it.  I too am a side sleeper and usually have quite a flat pillow, but I'm willing to give anything a go that might get me some rest.  I also got my chemo start date today, so it all kicks off 02.08.22.  Also had the blood test to see if my cancer is genetic; I doubt that is the case, but just on the off-chance, worth doing for my kids.

What is next on your agenda? 

Love

Fatface xx