A Rant About My Chemo Care

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!

Eyebrow Tattoo

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 ;)

Chemo Hairgrowth

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

Brave The Shave

 

 

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5 Responses

  1. Annie August 21, 2015 / 12:32 am

    Stay strong. And tell of those nurses. When one becomes a nurse one takes an oath to CARE for the sick. It’s not about the money they earn. Tell them to bugger off if earning money is their priority.

  2. Stacey August 21, 2015 / 2:03 pm

    Hi Zoe-good to see you’re still kicking cancers arse! I didn’t need to have chemo which is something I am very grateful for and I was very very lucky it seems to have consistent care here in Dubai-I have one oncologist, one surgeon and my surgeons nurse=all of them have been outstanding. The one thing I really feel is missing now I am in remission is help dealing with the impact emotionally that cancer has on your life and the ‘putting your life back together on your own’ feeling. BUT I can do it, I just need time.

    Good luck with your next chemo sesh!

    Stacey | Expat Make-Up Addict
    Stacey recently posted…What’s in my handbag? The Anya Hindmarsh Smiley Maxi Featherweight Ebury ToteMy Profile

  3. Ben Thomas August 21, 2015 / 2:29 pm

    Hey Zoe,
    Didn’t actually know about your blog, but saw it through Alex’s FB page. Will keep following. Sorry to hear the care has been rubbish – makes me so sad and angry to think how badly the NHS has gone downhill. Sign of the times sadly. I wouldn’t have been able to keep my cool. Sounds like you’re soldiering through, fair play. Hopefully you’ll be recovered soon. Wishing you a speedy recovery!

    Bx

  4. Cath August 22, 2015 / 1:54 pm

    Yey high fives for your hair reappearing! Altho you do carry off a head scarf v well!

  5. Anita-Clare Field August 23, 2015 / 2:37 am

    Hi Zoe,
    Great post. So sorry for the loss of your Sister-In-Law, my love to Alex. I spend quite a bit of time there too, with my Mama. I agree totally with everything you’ve written here and in the past 13 years I’ve seen things just get worse. I arrived the clinic named after Churchills house last Thursday to pick up my Mama’s drugs. I am told to be there for 0830. They kept me waiting for an hour. No nurses appeared until 0910. Shift changes at 0800. Then I was informed that my mothers details had not been logged in the diary. I had to tell them what to do and what I needed. I agree about the oncologists unless you see MH that is. One Oncologist has right royally messed up with my Mama’s scan results this month. I’m considering my options here. keep fighting lovely and if I see you in the waiting room next time at least we can chat to each other during the 3 hour wait xxx
    Anita-Clare Field recently posted…La Petite Bouchee Crowdfunding Project UpdateMy Profile

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