Awake and up all night

Thank you uki. 

I know what you mean but some take it too far. I think since the pandemic and over use of mobiles makes some folk robotic as they forgot how to interact lol

You are absolutely, blooming coping, you hero

Thank you dingg for your kind words. I have got a lovely family thank god and a very good friend pat. I value everyone on here who have been supporting me since my diagnosis. So thank you everyone. Sending you hugs and love.xxx

I've got to say that everyone here has helped me so much. Each one of you in your own way has shown me what it is to be human, honest and caring. When you've struggled, panicked, cried, despaired and still laughed and given support. You're all bloody heroes. Well that's what I think and Pippin seconds that.

Aww bless little pippin. You deserve support uki. Everyone loves you.xxx

Evening Uki, and a cracking post from yourself and Pippin, our wonderful therapy kitty.

I've been MIA for a while as I've been chatting to friends on our small group. The chats have been similar to here, about getting wrong information or sometimes none at all, and how it impacts patients. The lack of proper interaction between 'us and them' affects us all. I appreciate how busy things get but there are several ways, using technology, to prevent breakdowns in care and communication.

Many folk get too exhausted and generally give up the ghost, but I urge you all not to do that and keep pushing until you basically get your own way. I've done it several times and got positive results for OH. What I really don't like is how cold some of the 'higher ups' can be and we've encountered a few. I've got a well practised death stare and glare at them. It might not do any good, but it certainly makes me feel better and I refuse to cry until I leave the hospital - it's usually OH who sheds tears and then they fawn round, maybe because he's a man. I don't know, but I'm pretty fired up tonight.

This is off topic, but when I came back online I noticed  the armchair has been changed to a computer screen by our usernames?

Hugs and love to all, and especially those going through the mill at this time. Take care my friends xxx

My ongoing battle is administrative, rather than clinical, and I took out a formal complaint a couple of weeks before I went into hospital.   I haven’t had the energy to do anything since I’ve been out, but will have to get back to it soon

i’ve been trying to get access to my medical records since 5th February, when I submitted the necessary formal application.   They are supposed to respond within 28 days,  they’ve ignored my follow ups, so I tried to get help from PALS - they’ve proved to be as useful as a chocolate teapot!

I’ve said to both that I’m undergoing cancer treatment,awaiting surgery and need full access to be properly involved in decision making about my care…..nothing.

i couldn’t believe how responsive and efficient the cancer pathway has been throughout for me, but sadly this doesn’t  extend beyond the tight borders of the pathway.

Oh hell, Rose, this was pretty much what we were discussing on the other group. Is the form a Subject Access Request? If it is, it took my friend nine weeks to get his, but I believe PALS did help him with that. His records go back several years and the revelations he gained from them didn't make for pleasant reading.

I hope you'll eventually regain enough energy to pursue your quest Rose, as you owe it to yourself. I really feel for you my love, and hope you can keep going through this awful time you're having. All I can offer is sincere empathy and heartfelt hope. Love and hugs sweetheart xxx

Hello Gill, I agree it is a sad state of affairs when patients or carers have to be alert to medical treatment in hospitals which is going off track or is clearly wrong. My hospital has been very good with me but even with my tendency to 'see the other side' (NHS overload, insufficient investment and political pressure to improve statistics = greater throughput but reduced quality of care) I have had a few instances when things could have been handled a lot better. I actually self discharged myself on one occasion after comments I overheard about me. I was so ill that I had explosive leakage from all orifices in the ward toilet. I was so embarrassed that I was in there for over an hour cleaning up the mess. No one checked on me. When I returned to my bed, I accidentally knocked my urine receptacle over. More mess and comments that I'd done it on purpose because I was scared of it being analysed. Now some of this may have been affected by my dangerously low haemoglobin level i.e. my judgement may have been going to pot. After I was re-admitted (ambulance ride) a couple of days later, the following 3.5 weeks were touch and go at the beginning but the care I had was absolutely superb. After my eventual discharge I needed psychiatric help (an appointment) to discuss the troubled earlier events. It helped, but I basically had to accept that I was going slightly nuts and have had to put a caveat against those memories.

One nurse who wheeled me in to the op theatre with my daughter was actually shedding tears. Another nurse who was constantly attending me when I was gravelly ill agreed to pray for me when I asked her about her religion. I am not hugely religious but receiving the last rites an hour or two earlier from the chaplain did not really help. The nurse was my final attempt. Coincidence or otherwise, I began to pull out of my nose dive. So, on balance, I have never complained but fully understand those who do. Cages need to be rattled at times. Recounting that has brought tears to my eyes. Cancer puts patients, carers, families and medical staff under immense pressure. This forum helps all of us to hold ourselves together. We all try to help each other.  Ray xxx