Phone call

Hi Janet500                                                                                                                                                                                      Its an absolute nightmare at the moment and i just cant see it ending soon.I have been newly diagnosed and being pushed and pulled in all directions. I have no port of call as my consultant finished what she has to do and have not even been assigned an oncologist yet.I have at last got a telephone doctors appointment that has taken me a whole week to get to ask him to keep me informed of the latest news. I know i wont even start any treatment for my bone cancer till after June and then i will have to join a very long queue.I am concerned for my mental state at the moment and so are my family, so incurable cancer, no treatment, no job, no money,unless i go on universal credit which i don,t want to and corona virus just to finish me off, welcome to my world its all so over whelming Keep safe and well xx

Hey Janet, 

Surely you knew the phone call was coming from all you've read here and on the other sites you've been looking things up on? Why would they put someone at risk of catching the virus when they don't have to? If an appointment can be done over the phone for someone, then of course they will. I'd say count yourself lucky that you're still getting the appointment at all. Lots of people aren't even getting phone appointments to replace the cancelled face to face ones.

As for you having to wait and see about your chemo, that's not cruel at all, it's procedure. You started stressing and crying weeks ago when you first found out about the NICE guidelines and told us about them. So just continue on with whatever coping mechanisms you found helped for a bit longer. It's like waiting for test results, only the doctor can give you them, not a nurse or a receptionist, so you just have to wait. But I would probably start preparing yourself for it not to be started up again - but without panicking because that will do you and those around you no good whatsoever.

This is a crap, to put it mildly, situation the entire world has found itself in. The doctors are doing their best with what they have available to them. So whatever decision they make, it is in your best interests. Falling apart momentarily is fine and normal, but you've done that already and so you need to find a way of coping and getting through this period. Did you try any of the mindfulness and meditation apps that have been suggested previously? Have you tried reaching out to the mental health charities or the samaritans? There are lots of things available to help get you through, so it's def worth investigating them!

Heya wino, 

See above for advice on your mental health as well. Lots of things to try that might resonate with you and help you get through. 

Regarding no money, my own opinion would be that you can't have that as something to complain about when you could get money from benefits but you won't apply for them. If having no money is an issue that's causing you stress, apply for benefits and remove that stress and worry. Can I ask why you don't want to apply for benefits? After all, the help is there exactly for this sort of a situation and is part of why you pay tax when you work. 

Good luck to you both, I hope you find the help you need and that suits you and your personalities. 

Lass

Xx

Dear Janet

please done take the abrupt nurse to heart. I know it’s hard not to to when you have more questions than answers but she probably does not know the answers.  It’s the consultant that you need to speak to, so hopefully she will have a plan and will explain everything on the 15th.  You just want to Get started and it’s soo hard not knowing.

i hope the consultant gets things sorted for you on the 15th, I really do.

wish I could help more

Stay safe

Hi Janet & wino, I just wanted to send you my very best wishes & hugs for the terrible position you find yourselves in, I can’t imagine how stressful the wait is for you just now.

remember it’s ok to feel upset or angry - give yourselves time to feel this way and don’t fight it, I won’t tell you to try gardening or walks or anything, as it’s ok to feel this way, this is a tough time. And weeping, rage etc are all valid emotions to feel.  That’s probably not helping either but I just wanted you to know that you are not alone in this.

one thing someone told me when I was waiting for scan results was “don’t rush towards bad news” - Janet, you may hear your chemo is stopped on the 15th but equally you may not, in which case you have spent 2 weeks agonising for nothing.  I really really hope it goes ahead.

stay safe and I wish I could help more too xxxx

Hi Roobarb      it was very kind of you to take the time to offer such good advice.I will follow your advice Thank you Xx

Luckily I’m on oral meds so I had obs done at gl, a chat with the nurse over the phone and the tablets will be sent out. When this is all over I wouldn’t be surprised if more appointments aren’t done remotely.

Thank you Roobarb for your kind words.

Janet

I can see how worrying and frightening this is for you. I don’t think people are being deliberately unkind but this is a very difficult situation and it must seem very unfair. I hope you can find some peace while you wait for your phone call. You’re allowed negative feelings. It’s too much like hard work to keep trying to bury them. 

Hi Maybug thank you for your reply. I hope the antidepressants will kick off soon because I have no joy from this life at all.My positivity gone down..if they will stop my chemo basically they leave me to die.I am sorry but i am so depressed I am only 42 but my life is over if they stop it.

I have a plan if they stop my chemo I will return back to work .vulnerable or not and just drop somewhere.At least my work gave me joy.Not sitting at home and waiting tumors growing without any help.I disnt get any help even for with my painful arm.

I cant live like this anymore.

Oh I don’t know anything about antidepressants but I believe they can take a while to work. Don’t be afraid to phone your GP again if you still feel as bad. Is there anything that can give you a little bit of pleasure in life, even a nice bar of chocolate? I find YouTube can be a good distraction. Would it amuse you to look up music from when you were a teenager? It’s amazing what we used to like. That can easily fill a good couple of hours and takes no mental or physical energy. There are comedy clips on there as well. Try to hang in there and don’t be afraid to ask for help. I’ll be thinking of you. x