Retroperitoneal Leiomyosarcoma part 2

[Earlandmrsgrey]

The power of Mumsnet...I actually had a reasonable nights sleep!!

Work night out tonight. Bongo's Bingo in Clapham. Not sure what to expect but I wasn't going to turn it down. I'm hoping to find a good balance of doing stuff/doing nothing this year. I get so exhausted, but I don't want to spend the rest of my life on the sofa! This blasted cancer has at least resulted in the reconnection of some old school friendships. Every cloud... sometimes you just have to search a little deeper for the silver lining.

www.mumsnet.com/talk/cancer/5394978-likely-pancreatic-cancer-how-do-i-tell-my-mum-that-im-probably-dying-from-the-same-thing-that-killed-my-father?page=1

Oh @Earlandmrsgrey I'm so sorry to see your update, I hope whatever treatment they come with next has far less side effects but with a much better outcome.

Also sorry you had such a rubbish birthday, sounds like you should pick another day and have a do-over, maybe when your mouth symptoms have calmed down. Try and stay cool and I hope your feet improve asap x

I am so sorry to hear your update. Sending you much love x

So sorry to hear this. Sending you love.

Thinking of you @Earlandmrsgrey I have leiomyosarcoma too.

I wish it wasn't so, OP. Sending love and strength to you 💐

So sorry you had such a rubbish birthday and have had to cope with bad news. Sending you love and strength and hope the next treatment gives you a better outcome. 💐

So sorry to read your update - sending you much love and hopes for better news going forwards xx

Sorry to hear about such a rubbish update. I agree that you absolutely deserve a birthday do over on a day of your choosing.

Oh op, this is the first time I have seen your threads. Fuck cancer! I know how frustrating it is to see what medical stuff is available in America as standard that we don't have yet, as I am in a similar boat. But being on a medical trial will help future people with the disease, so thank you for doing it, even if you are in the control group.

I am so so sorry after reading your update. For you and your lovely family. x

Thank you everyone for your kind messages of support. I've never really been one for opening up in a real face to face situation. Growing up, my mum was never really one for talking about emotions and I guess that has really impacted the way I communicate. I've always made sure that I haven't been like that for my sons but with others I struggle to be open about my feelings. Definitely a bit stiff upper lip in person but I do need an outlet and mumsnet it is! There's no way I could talk to a therapist or use a support line. I'm upset, angry and frustrated and I just want to know what the next steps are. The waiting is unbearable. PET scan is booked for Monday, it's going to be a hideous day as its not until 4:15pm. Therfore only water after 10:15 and I don't get to eat until about 5:30-6. I'm going to be so hangry by then.

Today my husband made me get out of the house. We've wanted a new bathroom since we moved in 20 years ago and we're damn well going to do it. After schlepping round numerous massive showrooms and just being overwhelmed with what is on offer we ended up in a small independent. They'll be round in a couple of weeks to measure up and design the whole thing for us. The owner totally understood that I just want a functional bathroom and that neither of us have the headspace to design it ourselves.

Dorset knob and owl painting friend wants to take me to Inverness. If we can arrange it then I'll explain why in another post.

Obviously I've cried a lot over the last couple of days. I'm melting in the heat and my stoma is not liking it...oh boy is she whiffy. Are the drains blocked again? Are they muck spreading the local farmland? Nope it's me and I don't even have a dog to blame!!!

If there's ever a time to be angry and sad and frustrated, this is it. Did the oral thrush calm down? This weather is awful at the best of times.

Do use this as a safe space to vent @Earlandmrsgrey So many people, myself included, have followed your post since the beginning and just want the best for you. I totally get what you're saying about opening up - I think my childhood was similar and I am totally dreadful at being openly vulnerable. I have had therapy myself which was useful but I still held back some even then. Anyway, wishing you well for Monday and hope you have something yummy planned for dinner. Sending hugs x

I'm listening.. rant away..x

@Earlandmrsgreysuch a tough time. I really hope that it’s possible arrange to get to Inverness.