Our experience - staff

I've wanted to write a post about this for a little while and didn't get round to it but I've just been prompted and wanted to write whilst it's still fresh in my mind.

I've written quite a bit about the experiences we've had with some doctors, oncologists etc regarding Steve's treatment - I've had numerous battles with lots of hospital staff due to not feeling like Steve was being taken seriously, not feeling like the side effects of treatment were being dealt with efficiently, and lack of referral for further tests where they were clearly necessary.

I stick by everything I have said with regards to these things - I still feel that he has been let down in some aspects, as have many other patients I've heard of, and I feel I've had to get more worked up than necessary on some occasions before anyone took notice and realised that I've done my research and (although not a medical professional), I sometimes know what's best for my husband.

That being said, I really wanted to write a quick note about the more positive experiences we've had too. We have genuinely had some outstanding care. The chemo nurses in general have always been lovely, caring and accommodating and it's clear they always do their best to make sure chemo runs as smoothly and comfortably as possible for all the patients.

The oncologist I mentioned a couple of posts ago had been fantastic recently too - I'm not sure if this is because I scared him with my outburst, or whether it's just coincidence, but he has shown real compassion for us since our appointment in February and always makes a point of trying to see us in person whenever possible, instead of us being assigned to any of his team.

What's prompted me to write this post today is this: we've just had a district nurse out the flush Steve's chemo lines before his penultimate session on Wednesday (I've been trained in doing this myself and have all the equipment but Steve had an appointment he had to get to today and the district nurses tend to be much quicker than me so we asked them to come this time!), and I have to say she was the loveliest lady! She was slightly late, so when she was finished, Steve had to quickly rush off to his appointment. I expected her to follow him out and leave as she had finished but she stayed and chatted with me for 25 minutes after Steve left, asking how we were both coping and if there was anything she could do for us. We're actually both coping extremely well, but the fact that she was so interested/concerned for our well-being reminded me that we're both humans, not just a patient and a carer!

So I know I'm a bit of a complainer when it comes to Steve's care sometimes, but I wanted to write a quick post just to show my appreciation for the NHS (who are amazing and who, quite frankly, we'd be screwed without) and in particular for the people who make a real difference and have made us feel like people. It will never be forgotten and we are so grateful to people like you who have the ability to make a horrendous experience that little bit easier. Thank you.

Lots of love Xx

Another (very late) update!

I've done it again! Forgotten to keep you all updated! Ooooops... Sorry.

Just a quick one this time :)

Chemo has been pretty smooth sailing so far... At Steve's 6th pre-chemo, all hyped up thinking he was going in for his final one, he was told that because it was working so well, they wanted to increase treatment from 3 months to 6 months. Given how blasé some of the doctors have been in the past, we can't and won't complain about this, but Steve felt so deflated when he learned that he was only half way through. Although it hasn't been as bad as the oxy/cape regime last time, he's been totally exhausted and feeling sick all the time. He's also getting horrible acid reflux, sleepless nights, infections in his tunnel line... The list goes on. He's somehow managed to work full time through all of this and I have to say I really admire that!

Fast forward to now, and we have two sessions left out of twelve. He's had the occasional reaction to certain medications etc but in general all has been going well. He had a second scan and they're still really happy with the progress so here's hoping it will continue to work its magic!

That's all for now, please leave a comment or tweet me @GinaParker21 if you have any questions or comments :)

Lots of love Xx