Mental health. How do you keep yourself sane when everything around you feels like some alternate version of reality?

Hi JenW

I so get this, but I definitely think it's cause you are more sensitive/ aware. When I was diagnosed and then when going through treatment and even a little bit now it seemed like every post on social media or news article etc was cancer related. Xx

Would also like to apologise for posting yet again. I've got so much running on 'low level' through my mind, whilst trying to just be 'normal' day to day when I speak to my friends/family... I'm also freaking out that my symptoms have been there for around two years or more, but until only a few weeks ago I was reassured over and over it was internal hemorrhoids and now I'm seriously worried how this delay is going to affect the outcome. Even on the day of my op on 6th March, they ran through how they would 'fix' the issue before I was put under. They seemed confident. Then I woke up... and was in recovery for around 6 hours before anyone came to explain. I was completely out of it and fully numbed down below so I couldn't feel a thing. When they did come to see me, I was told they had found an 'ulcer' or some kind of 'wound'. It took two scans over the next week or so before I was brought back in to be given the diagnosis. This pain has become steadily worse over the past year and I've just been muddling through, telling myself not to be so melodramatic. So many people have hemorrhoids and still work and function.... (and that's not to say that hemorrhoids aren't extremely painful and affect people's ability to function normally)

I guess I'm just scared.... but I spend most of my time in what I can only describe as a very unnatural state of calm. Xx

Hi Jen,

What you are experiencing is so understandable. Once you have the diagnosis it seems that everything you read, hear and look at is suddenly cancer related. I think it’s just that we are suddenly tuned in and hyper aware. You are most definitely not losing your mind!

You had such a long journey to get to the point of diagnosis and don’t even underestimate the impact of that. I was told all sorts of things too in that process - that I had diverticulitis, a fistula, skin tags, a rare ulcer and eventually the biopsy which took almost 8 weeks to report and only found out through my gp accessing the hospital system that I had SCC.  

You have had 2 years of waiting and worrying, knowing that something was wrong. That’s a lot of stress to endure and of course you are worrying about the potential impact of the delay.

I really hope that once you start the treatment you will feel more in control, knowing that you are finally getting the treatment you need, and that it is effective. All the waiting is truly the worst part or at least was for me.

Never apologise for posting here Jen. We all ‘get it’ and are here to support each other.

Big hug to you xx

Thanks Peb x I don't think the sleepless nights are helping with my mood and mental state. At times in the middle of the night, I just feel full of despair... I got pretty upset last night because I'd had a relatively good day with little pain, but then it came back with vengeance :( just spoken with nurses again and they've emailed my GP again to see about increasing the slow release meds. I'm hoping that will stop me waking so many times in the night for pain relief. 

I can't believe you had to wait so long for your biopsy results and that you actually had to chase it up to find out! That is absolutely disgusting. Thank goodness you did chase it up or who knows... I used to have so much faith in our health services, but now I feel like you have to question everything to make sure you get the help and treatment you need. It shouldn't be like this and not everyone is able to advocate for themselves as well as others. 

Jenna xx

Hi Jenna,

Sleepless nights due to pain are the absolute worst. All the worries can really intensify in the small hours and I’m really sorry that you are going through this.

 I hope your gp is responsive this time now that the nurses have emailed and that you get a better pain regime. If you can manage to sleep it somehow makes everything else more manageable. You have had such a tough time accessing help up until now. 

You are right about having to self advocate sadly. Thankfully not everyone has this experience but for those who do it’s a challenge to keep pushing when feeling unwell. 

Really hoping that the increased medication will ease your pain and that you get some much needed rest. Xx

Hi JenW , I hear you!

I remember when I was awaiting my biopsy results & also post diagnosis every other advertisement or TV programme had some kind of cancer reference! It truly was unbelievable how often on tv cancer was actually spoken about & I remember thinking to myself that this was a sign & was connected to my personal diagnosis!

As PEB24  has said you’ve had all of this time prior to  your diagnosis suspecting something more is wrong & now 2 years worth of your worst fears have resulted in this diagnosis, you’re bound to be spiralling somewhat. We really do understand as we’ve all been there too. You mention the waking in the middle of the night, this happened to me too & everything seemed so much worse in the middle of the night when everyone else was fast asleep & everywhere was so quiet, I would have to put on the tv to try & distract my thoughts even just a little bit. 

I’m sure the people around you aren’t expecting you to carry on as normal right now, nothing about the situation you’re in right now is normal is it? If you feel that speaking with someone would help you please do ring the MacMillan Helpline, you may find that being able to verbalise honestly how your feeling to another person might help you even if that’s just a little. 

I hope that your meds getting tweaked helps with the pain you’re experiencing & remember we’re here to support you however we can.

Nicola 

Thanks guys.... it's really is helpful just to write this stuff down and hear from people who understand through their own experiences. I have spoken to Macmillan and am going to be having 8 talking therapy sessions with them, which I'm grateful for. 

GP called me earlier and has advised to try taking 2x 10mg slow release at night instead of just the 1 and see how that goes. First night trying it, so really hoping I wake less tonight. Fingers crossed

Jenna x

I’m so pleased you’ve spoken with someone from MacMillan JenW & you’ve managed to secure some talking therapy, sometimes it is helpful just being able to get the true way you’re feeling off your chest & this is often easier if the person you’re talking to is removed from family or friends as I think we try to protect those we love & care for & therefore sometimes hold back our deepest fears etc., so hopefully you’ll be able to fully open up & gain some coping mechanisms to help you through this.

It's great to hear also that your GP has reviewed your pain medication, I hope you found it helped last night.

Nicola 

Hi Nikki,

Thank you x unfortunately, last night saw no change :( still waking every couple hours with pain. I'm really at a loss to know what to do. I wonder what benefit taking morphine is really having tbh. I really thought it would help significantly, but it's not. I slept pretty deep in between taking pain relief, but for no more than two/two and half hours each time.... then took ibuprofen with yoghurt as soon as I got up. 

Jenna xx

Oh JenW

I hear you, I really do.  I am three years and one month out from treatment (counting, me?) for a stage IV diagnosis and because of visiting cancer sites, all these cancer stories come up on Facebook, Instagram and yes, television, news everywhere.  I do vaguely understand the technology and opt out but they still keep appearing.  I would like to shove it away and close the door hard.  I really feel for all these tragedies but not from every source, every single day.  And the really dramatic (and unbearably sad) ones are a constant reminder of the fragility of life and I think I really need to take a step back.

You have had such a hard time, in your quest and delay for a diagnosis and I am not at all surprised (and so very sorry) that you feel this way, and my heart goes out to you.

I can't offer a solution, only saying that I commiserate and a hope that the chattering voices in your head will be still.

Big hug

Irene xx