Oops! Another month has gone by and I’ve been a naughty blogger because I haven’t been back to fill you in on all the news. Since my last update, I’ve actually been pretty busy and the time between my last chemo and tomorrow’s session has dragged a bit. I’m just willing the days to fly by and can’t wait for my final treatment on September 11th – then it’s onto the op and radiotherapy. Hurrah!
I was thinking about what I’ve disliked the most about this whole cancer process (prepare for the rant) and it may surprise you to know that it’s hasn’t been the treatment and the side effects themselves. As difficult as they have all been, the thing that has been the hardest for me is actually the standard of care I have received from many of the chemo nurses and hospital staff where I’m being treated… and let’s not forget the time I have had to spend in the waiting rooms!
Don’t get me wrong, it hasn’t all been doom and gloom on the care front. When I was first diagnosed, I was really chuffed with my initial oncologist and the attention I received from my breast care nurse, however after my first treatment, things rapidly went downhill. I’ve been having an appointment every three weeks for a little catch up before each chemotherapy session and have so far seen a total of FIVE oncologists. A few have been good and others not so – you get that, but when you’ve been sat in a waiting room for two to three hours, it would be really bloomin’ helpful if they gave you test results without just presuming you know them already, and if they actually knew more about your case, including how far in you are with your treatment. Grrr.
Aside from seeing the oncologists and a few other appointments here and there, I go into hospital every week to have my PICC line flushed and its dressing changed (a process that should take 10-15 minutes). There have only been a handful of occasions where I’ve got out in forty five minutes and all the rest have been over hour-long waits, followed by the actual clean – I appreciate things do run behind from time-to-time, but I’ve been doing a lot of observing in those waiting rooms and I’m pretty sure things could move a little faster, to say the least.
The times I’ve struggled the most with my appointments (and the hospital waiting rooms) has been when I’m in recovery, directly after chemo. There is no special treatment, even if you did have chemo four or five days before – you just sit there in the waiting room with everyone else, counting down the minutes until you can get back home and crawl into bed.
I’m not sure if I’m just one of those patients who blend into the background, but I can’t remember a time when a chemo nurse has asked me how I am, or how my last treatment affected me. There’s no chit-chat; no time to make you feel special. To me it just seems they hook you up and carry on dashing around looking busy, even if the room only has a few patients in it. I’m most disgruntled by the amount of staff that don’t even say hello to me after seeing me for months and on many occasions. It’s like I’m just another file in their system.
I’ve overheard that the nurses don’t get paid overtime in my hospital, the pay is not anything it should be and that they have to spend far too much time entering data into a computer system that doesn’t work very well, but the way I’m being ignored is just not on. I haven’t even seen my main breast care nurse for a good few months and the other one doesn’t even know who I am. It just really angers me because I also see lots of other patients being treated this way and many of them are elderly. Luckily for them, they tend to find that time useful for a little nap. Me, not so much… Some of us are trying to carry on working through this cancer lark because they can’t claim any benefits at all (and to keep themselves sane).
… and breathe.
Anyway, it will all be over soon! I’m going to leave this one there and will hopefully be back soon with a more cheerful post. I just need to get through the last two, and hope that my brain unscrambles itself soon after as writing doesn’t come so easily to me these days. #chemobrain
Until next time x
Here’s s pic of me after I had my eyebrows tattooed in Paris… I’ll blog about the whole process once I get back from my next trip… Yes, I have to return and get them touched up!
My hair has been growing back for a few weeks now. Hurrah! I was expecting not to get any back until chemo was over, but apparently it’s normal on the medication I’m on. Nothing like a head start ;)
Last, but not least. Alex managed to raise £1,126.50 for Macmillan, by taking part in Brave the Shave. Sadly his sister lost her battle to cancer just before we left for Paris. She fought a good fight over many years, but sadly lost. I didn’t know her as well as I would have liked, but we all know the Parsons family are a lovely bunch. Rest in peace xxx