Am I ill or depressed? Do I care?

First of all, welcome. You are not alone. The treatment is a shock at first. very often they will put you on very strong meds to start with, so that can make you feel a mess. The thing to emphasise is that we are 'living with' cancer, with the emphasis on living. So we need to try to live our lives, what we have, as fully as we can. I try to keep myself busy, try to do stuff I enjoy as much as possible. The challenge, I find is lack of energy so I am constantly stoking myself up with energy foods and proteins. But good sleep is also important. And if they have given you painkillers then try not to take too many of them. 

As regards is your treatment acceptable then no it is not. Cancer treatment is supposed to be premium but it really isn't. You are just another patient so if you aren't happy, say so. In particular try to get some of the oncology nurses on your side. Some of them are brilliant, but as you have found the service level can be frustrating. "Service?" Yes, that's what the S in NHS stands for.  They are pressed, for sure, but often could do better. So be a bit pushy sometimes.  

I only signed on today here looking for some advice myself and have ended up giving it!. But maybe that's not been wasted. Good luck in your journey.

Andrew, 67, incurable myxoid sarcoma since January 2022. Doing ok. Hope you are too. 

Hi Sledge, sadly these are some of the realities of living with our prognosis, regarding your experience from the emergency Onco, it's totally unacceptable, but not uncommon, you have to fight your corner, if your not happy, tell them, be polite but assertive, if progress isn't good enough then consider PALS,  or a letter of complaint. Their is also the option of changing  consultants or indeed hospitals.

Cancer, especially our cancer is a very aggressive disease, which needs a corresponding treatment to tackle it head on, and all treatment used to kill cancer cells will also damage many healthy cells which means impacting other parts of the body, IE, side effects, I don't know anyone who hasn't had a few.  I myself have 11, and it's tough, losing the life you had,  and my friend, the emotional impact is enormous and it's hard/impossible to be positive all the time. I get fed up with, how am I going to feel in the morning, what surprises will my treatment throw at me, will I be able to eat, will I want to eat, how much pain will I be in, will I have any motivation or energy and where will my thoughts take me. It's tough my friend, but I'm not going to let this b#st#rd disease control my life, I focus on the positives, no matter how small they may be, try to be positive, it gets easier,  and try to have something to look forward to, enjoy the good days and accept the bad ones and move on, today I was readmitted to my hospice, not what I expected, but I ll move on. as someone else said I have cancer, cancer doesn't have me. It's time to pull those big girls knickers up my  friend.

love Eddie and Sheila xx 

Hiya sweety...I am truly sorry u r suffering so. But try and take heart from the friends around u in this forum,  because they truly know about some of what ur going through with ur treatment.

I think the depressed state maybe because you have no control, no direction and little faith in ur oncologist team. I had this in the new year, I went really low which is very rare for me. But my results appointment gave me a chance to talk and now have a road map. 

Write ur list and ring your team again...

I am sorry it's a short note but i am thinking of u and here for u

Huge hugs

Hey, first thing I thought when I read this was "why is this person still trying to work?". There are times and places for everything. You should be focusing on you and you alone. Get a little bit better first before you start caring about other people. It will come but give it time. Have a good evening and stop hating yourself and life

Thank you all for your responses.

This was truly intended as a rant. I know I'm still adjusting but I've always been demanding of a person's profession. In terms of complaints for the hospital I've already started. I'm already looking to replace the oncologist. Spoke to PALS last week and I got a call from another Oncologist a few days ago looking further into it. So I've outlined what I need from my Oncologist in the future. As far as the Emergency unit I will document issues and proposed improvements. Standard of care should be challenged and measured. 

The bad news is that without much discussion my tumours have grown and spread further in my lungs. My cancer is very aggressive and there's a possibility it could be in my brain too. The treatment I am currently undergoing is ineffective. By the time they figure out the right treatment it may be too late. My instincts are already telling me this but I hope I am proven wrong, but I won't be surprised if I am right.

In terms of work. I happen to love my career and I won't see my husband struggle at this time to make ends meet. Until I am told I am terminal I will carry on. 

Pain management is something I had a disagreement with my current Oncologist. I don't take painkillers unless I absolutely have to, as they become ineffective overtime. This is seeing the effects of usage over the last 40 years.

The big girl knickers were never off but sometimes I just get frustrated by the level of incompetence and what nurses should or shouldn't say to a patient as an excuse/reason.

Fatigue has definitely shown its face and I am learning what the new boundaries are. What should be understood is I am a person who has spent her life adjusting to constraints introduced by age/wear & tear. This is no different. I haven't been a fully able bodied person in 20+ years. 

Thank you all for your support and well wishes. I do appreciate it. 

Love 

Sledge x

Thanks Ramsbottom

Hope you get the answer you were looking for.

Sledge x

Hi Eddie

Thanks for the advice. 

Hope your time at hospice goes as well as can be expected. I'll keep you in my thoughts and prayers too. 

Say hi to Sheila and I hope she is doing ok too.

Big Hugs from me to you both 

Love 

Sledge x

Hi Fleabane 

You are absolutely correct. It does frustrate me that I don't have control. I don't appreciate being hurried along because I have run out of time of the appointment and I always come away incomplete.

I'll wait to see what happens with the new Oncologist. 

Thanks for your support x

Love 

Sledge x

Hi Patrick 

In answer to your comment. I love to work!!! I like my career. Since the day I was born I have been told I wouldn't survive or I wouldn't be able to do things. If I had taken the advice given I wouldn't have ever worked, let alone build a career. If someone says I can't do then my reply is 'watch me'. Where there is a will, there is always a way and I am going to find it.

Not everyone is like me and I know it can be tiring. I just have to find the happy medium.

As the hating part - I was definitely having a rant

Hope you have a good day.

Love 

Sledge x 

Morning Sledge, your welcome my friend. my advice to you was also aimed at me, I do relate to a loss of your previous life and control over your new one, and sadly having to put up with lies and incompetence from some of those "caring", for me, and cancer that's spreading no matter what treatment I'm on, it's shit 

But it's a lovely day, I  feel ok"for me", so a little walk with Sheila and the dogs, and lunch at the garden centre with friends.

Sheila says hello, and asks what are you up to today.

love Eddie and Sheila xx