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

 

 

Just checking in…

Crikey! It’s been a while hasn’t it? If I’m honest, I sort of lost the will to blog for a while because it felt like I was repeating myself after each chemo session and I didn’t want to bore you. I’m now recovering from chemo round five and have decided to pop back and fill you in – My special treat to you… Aren’t I kind?!

I’m not going to lie; things are pretty tough at the moment. At chemo round four, I managed to get a cold and was in bed for ten whole days. I shall never complain about the common cold again once all of this is over, that’s for sure (I will). I’ve now had my fifth round and am being treated with a drug called Docetaxel. It has different side-effects to previous medication I was on, and boy are they painful. My bones are aching terribly, I’m getting numbness in my fingers and toes, and I have constant stomach pains. As well as all that, my poor old taste buds (used to delightful gourmet treats cooked up by Alex) appear to have done a runner. I’m finding it pretty hard to eat anything at the moment, what with my furry mouth, but am persisting because I know that it’s the nutrients that will help me recover quickly. I told you I was here to give you a treat didn’t I? It’s all so glam in my hood.

As a special surprise to me the other day, the hospital sent me home with a box of eight syringes full of G-CSF, which I’ve been told to inject myself with. Should have been easy enough… unless, of course you have a problem with needles! Anyway, we got there in the end and after a few days of Alex and I struggling to do it (think along the lines of the Chuckle Brothers), he has taken full control. Today was the day that I had meant to do it myself, but I just couldn’t bring myself to do it. I do feel a bit useless, but I’m not going to stress myself out, because quite frankly I’ve got enough on my plate.

Some lovely home accessories provided by the hospital for my used needles… eek!

G-CSF Bins

Hmm, what else can I tell you about. Oh yes, I’m off to Paris next week. Hurrah! A very stern oncologist asked me what I was going to do if I get ill when I’m there. I responded with “um, go to the nearest hospital?” (obvs). There’s no way I’m missing this trip after having cancelled our holiday to LA a few months ago. I’ve got my special chemo alert card; I’ve got my EU health card thingymabob, and I’ve noted all the nearest hospitals… It’ll all be fine. We really need this holiday, and Betsy the Chihuahua certainly doesn’t want to miss her annual trip to the pet-sitter. She’s been cooped up far too much lately, as she never leaves my side when I’m ill in bed.

Aside from all the chemo action, I have managed to drag my sorry butt out to do some lovely things over the past month. I’ve also seen so many of my amazing friends – most of whom live in countries as far away as Australia and Berlin – who luckily for me, had UK trips planned in my hour of need. Everyone has been amazing, and I’ve constantly been receiving get-well gifts that have made me a very happy girl indeed!

The thing I miss the most at the moment is having the freedom to do what I want, when I want, and as it’s Summer, that mostly means travelling. Seeing those good friends in London really gave me a boost, and I hope that it won’t be long before it’s me that can get on a plane to visit them, wherever they may be. I’m also really missing my eyebrows, as it’s a struggle to draw them on when you are in a rush. I am however, getting them cosmetically tattooed on during our trip away, so fingers crossed that will be one less thing to worry about. I shall report back soon.

As you can see – some days the eyebrows just don’t match!

Chemo 5

FUCancer. I’m not letting you win, even if you are giving me a battering right now.

Five rounds done. Just three more to go.

Until next time x

Oh, and I’m still waiting for my MRI results, which will tell us more about how things are progressing… I’ll keep you posted.

Just checking in

I Get Knocked Down (But I Get Up Again) – Chemo 3

I went into chemo round three with much smugness on Friday 29th May. Having been prescribed the ‘wonder drug’ for sickness (Emend) that I’d been told would make the world of difference, I thought this one would be a breeze. How wrong I was! On the previous two occasions, chemo knocked me sideways, from about two hours after the treatment, until three days later. This time round, I was feeling ropey before I even got up from my chair. Say what?! Gah, this was not the plan, Stan… This was not the plan.

Nausea had hit me before I got out of the ward, so the nurse sent me on my way with some of those lovely-looking cardboard sick bowls… Who says you don’t get anything free gifts from the NHS, eh? They’re still sitting on my bathroom floor right now. Fancy!

The tablets did in fact work because I didn’t actually vomit, but that evening, I had such severe stomach cramps Alex had to call the chemo ward. We were talking a nine out of ten on the pain scale people. I wasn’t just whingeing for the sake of it. I was in real agony. When I heard the word A&E being bounced around, during Alex’s phone call, I was in a mad panic about how I was actually going to be able to drag my sorry butt out of the bed and into the car. Thankfully, the trip was avoided because I didn’t have that all important fever that I’m meant to be watching out for, and at some point I must have just passed out for the night. Phew.

Anyway, eight days of recovery time for this one, so it goes down as the worst yet, but I’m over it now and am really looking forward to my two weeks of better health. It’s quite an odd thing to get excited about really, but those two weeks out of every three are such a highlight that I find myself enjoying a lot more than I ever usually would. I’m particularly happy that my birthday falls tomorrow when I hope to be feeling in tip-top condition.

The really good news is that my boob lump has shrunk, so the treatment is working. It’s a regular occurrence for tumours to shrink to nothing early in the treatment process, but alas, you must still plough on with the chemo and see through all of the sessions before your operation. I’m not sure if I have previously mentioned that I’m having a lumpectomy, rather than a mastectomy – I’m happy not to be losing my boob right away, but if the margins aren’t good after the lumpectomy, I may need the full chop. Then, the question is, do I go for one or two? Jeez, what a thing to have to think about!

I’m actually quite surprised by how many people opt to have mastectomies instead of a lumpectomy for ‘peace of mind’, but each to their own, I guess. From the research I have done, lumpectomies and mastectomies have similar results with regards to the cancer returning, but a lot of women believe that the latter is a safer option. Obviously each case is different. Anyway, I’m going to take my chances and keep what’s rightly mine for as long as I can. Even if my left boob is a traitor, I’m not one to hold a grudge!

I hope to do something or have something other to talk about other than my illness before I blog next time. I do hate to bore you with all the same details, but until next time let me leave you with the gifts that chemo has given me for my 30 (something) birthday…

Things that chemo did to me this/last month.
Stomach cramps.
Tired, oh, so tired.
Horrible taste in my mouth – mainly in the evenings.
Tiny bumps on my tongue, that went away quickly.
Twitchy boob – Which is a good sign, but weird.
I have a hardened vein in my arm – from my first chemo session before the PICC line. It hurts. Ouch.
My eyelashes are slowly falling out, which is a nightmare with hay fever, let me tell you.
Watery eyes – separate from the hay fever watery eyes. Thanks for that.
I have no nose hairs left. How can I tell? Drip. Drip.
My eyebrows are thinning dramatically. – Nooooo! This is the one I have been dreading… How will people know when I am cross?! I have a plan though and will let you know about it soon.
Some of my hair tufts are slowly growing – I’ll need to shave it again, but I quite like knowing it’s there.
I’m cold ALL of the time – the hottest day of the year and I had a jumper on. I’m sitting with a hot water bottle right this second when it’s 20 degrees. Brrr.
It has given me the munchies – I’m grazing all day long, but luckily I’m not gaining any weight… Yet.
I’m craving chips and crisps ALL of the time – I’m not meant to eat potatoes, so this has been a tricky one.

And that’s all really…  I’ve heard worse ;)

In other news…

You need to get your chops around these Vietnamese spring rolls with crispy tofu with a side of
Stir-fried Chinese Cabbage

Vietnamese spring rolls with crispy tofu

We popped into Ms Cupcake in Brixton to grab some vegan/gluten free treats last weekend. A little market research as I bought the cookbook the other week. Our cupcakes were tad bit on the dry side, but they still tasted pretty good for vegan alternatives. They really need to make more of the store though. Definitely due a spruce up!

Ms Cupcake

Just reminded me of the old days…

 

Until next time x

The Waiting Room – Vegan Grub in Deptford

I thought it was about time I got out of the house and blogged about something else, other than this rotten illness that has kindly been bestowed on me by the powers that be! So, last Saturday Alex and I decided to head out for a fun-filled day in Deptford. ‘Eh, what’s in Deptford?’, I hear you say… Well, I’ll have you know that it may not be everyone’s number one choice for a London day out, but we discovered a little gem of a place called ‘The Waiting Room‘ that will definitely have us going back for more!

On the day that I was diagnosed with breast cancer, I immediately adopted a vegan diet. I’d toyed with the idea a lot in the past, but decided that this was as good a time as any, so that was that. There wasn’t a last (meat) supper or anything – just a straight swap, and it wasn’t all that hard because I had a lot of other things on my mind. It certainly helped that Alex became a culinarily vegan whizz overnight. Nothing better than your own personal chef! I shall bake him cakes in return, don’t worry. Eating out, on the other hand, has become a whole lot trickier.

Anyway, we found ourselves at The Waiting Room because I was missing the foods that I used to eat and was in need of a little ‘junk food’, to get me back on track. The Waiting Room is a vegetarian cafe, which offers plenty of vegan options. Veganism has never been so easy! You just choose what you like from the menu and say ‘make it vegan’ and they’ll pretty much deal with the rest. Now, that’s my kind of place – no stress over whether or not you can eat something. Just let them take care of the finer details, sit back, relax and stuff your face full of lovely food.

It’s not just vegetarian and vegans that are catered for here. The Waiting Room also offers gluten free alternatives, and I hear they do pretty darned good coffee too. I had my eye on a few more cakes and treats, but we had already gone a little overboard… All for blog research purposes naturally! I noted that they also serve amazing-looking Brick Lane Bagels… Mmmm, bagels.

The staff are all pretty hip in this establishment (like myself, obvs), and even though there was a queue for the whole time we were there, they got on with things quickly and didn’t seem flustered in the slightest. Alex and I had obviously got far too used to inflated food prices in fancy carnivore restaurants, and were pretty surprised with the total bill. The food here does not cost you the earth… What’s not to love!

We kicked off with these bad boys – I went for a Caramel Milkshake and Alex had ‘Bloody Kevs Bloody Berry’! 

The Waiting Room

Looks aren’t everything… This Hot Dawg was pretty tasty.

Vegan Hot Dog

We did prefer the burger though…

Vegan Burger

Ermergerd! This Brownie was epic… I told you we ate a lot.

Vegan Brownie

The Waiting Room

More food please…

Vegan Cafe

The ones that got away… We’ll be back for you – don’t worry.

Goodies

As for the area, Deptford is slowly improving and small businesses, just like this place, are definitely helping, but these things do take time. Don’t let that stop you paying them a visit though, because you’ll be missing out on a real treat. After we ate, we took a stroll and spent some time (and a little money) on some artwork at the Cockpit Arms Open Studios, who had opened their doors to the public, as part London Craft Week. By the time we got home I was pretty worn out. Unfortunately, my current health status doesn’t seem to carry me as far as it used to, but I had such a great day it was worth being totally wiped out for!

Until next time x

 

Feeling Down and More Test Results

There was bound to be a time where this breast cancer lark would have me feeling down, and I have to confess, Sunday was not a good day for me. I had round two of my chemo on Friday and my hospital care hadn’t quite been up to the standards I’d got used to… Nothing too serious, but when you’re someone who likes order, a little disorder can be very unsettling.

I was somehow fooled into forgetting the unpleasantness of my first chemo and round two came right at me with a great big punch in the face. Charming. The problem I’m having is that I’m being really sick, before I’m allowed to take my first anti-sickness tablets. I then feel a little better, take the anti-sickness tablets and they make me feel sick again. Something that needs looking into obviously, but when you don’t get to see your usual oncologist before the next round of chemo and see someone who doesn’t know your case for precisely three minutes, how are you meant to sort all that?!

I took one look at my still not completely bald self in the mirror on Sunday afternoon, and just became a total misery guts for a few hours. Cutting and shaving my hair made me feel in total control, but as I sit and wait it for it all to drop out, it is no longer down to me, but those nasty toxins. My morning ritual for the past few days has been shaking out my sleep cap, which catches the evenings ‘droppings’. How times have changed!

Ah, well, it’s Monday now and things are looking a little better. I’m still feeling nauseous, but I have just been made aware of an expensive drug that I need to push for, to stop me being sick. Apparently, no one should be vomming as much as me, so we’ll get that nipped in the bud, that’s for sure. I’ll probably get Alex to ask for the drug though, as he has a better way with the doctors and nurses than me – I’m more pally with the surgeon, which I think will pay off greatly in the end!

Don’t worry, It’s not all doom and gloom here in Camp Zoe. Last Wednesday, I went to get my results for the second lump and was told it was benign. Hurrah! I was then asked if I’d started my Herceptin treatment (by the temp oncologist who didn’t even know which round of chemo I was on). After explaining I didn’t know what she was talking about, she said “Ah yes, your results show you are ‘HER2 positive” – Great. Next time, I’ll have the results first, thanks.

Anyway, apparently HER2 positive is what all the breast cancer ladies hope for. This means that my cancer cells are more likely to grow and divide…  Stick with me here, it gets better. Between 15 and 25 out of every 100 women with breast cancer have HER2 positive cancers. It doesn’t sound like good news, but Trastuzumab (Herceptin) is a wonder drug that will reduce the risk of the cancer coming back. See the slight bonus there? As usual, the good comes with the bad and I will most likely have to have a stingy injection in my thigh, every three weeks for a year… A whole year! *sobs*

It’s good new Zoe. It’s good news. Hmm.

I have survived round two of Chemo – Just six more to go!
Until next time x

 

This little chihuahua has been very supportive. Barking to get out of her crate, and then running to me whenever I’ve got my head stuck down the lav… True love. 

Feeling down and more test results