Patient FAIL

Went to see the Oncologist on Friday. Very eventful consultation...not.

The Consultant had dispatched his deputy to see me, probably because I didn't have anything momentous to report the time before and guess what? I had more of the same this time too.

Her: How was the last cycle?
Me: Um, same as the one before really.
Her: Any side effects?

There followed a brief and boring discussion about how I suspected the steroids were making me feel worse rather than better and she confirmed I didn't have to take them the third time if I didn't want to.

Her: So, do you have anything else to say?
Me: Erm, no. (Wondering whether I ought to remind her that it was her department that generated the appointment, not me...)
Her: (Clearly wishing to add some drama and excitement to an otherwise boring consultation) Well, after this third chemo you will move on to Docetaxel. That is the strongest chemotherapy drug we use here so you will need to take steroids then and the side effects could be completely different! (Beams)
Me: Erm, ok, erm, thanks. I think I'll go now then.

Went to reception to book in for three weeks later as advised. Discover they don't have any appointments.

I was subsequently sent an appointment in the post, I imagine they feel pretty confident in overbooking these appointments if lots of them are as straightforward as mine seem to have been so far. I feel like a very uninteresting patient. My surgeon found me very novel and interesting but from an Oncology point of view I am one of those patients where nobody is going to remember your name.

Next time I'm going to ask for a full run through of my blood results, just to bring something to the table.

Yesterday I had a follow up telephone consultation with a very nice Breast Care Nurse. You may well wonder what a Breast Care Nurse would want with me nowadays. Well she had lots of options to offer me. I agreed to Lymphodema workshop - don't need it now but might need it after my next surgery later this year; Moving On Group - we're leaving that one until January; Prosthesis and bra fitting - they're sending me an appointment; Reconstruction - available on demand, apparently - shelved indefinitely; and finally, Breast Cancer Yoga Group - needless to say, I signed up for that straight away as my friends will all know how much I adore joining things and meeting new people...

Our version of normality

Haven't posted about any hospital appointments for a while as I haven't had any, yippee! However, this does not mean that my life has been meaningless. Quite the contrary.

Highlights of the past few days have been as follows:

Friday - Morning hospital appointment then Dan and I took Abbie to Babbacombe. What should have happened was that Abbie would play on the Downs with a football (which, sadly, we had not brought) before having a relaxed lunch.

What actually happened was that I stupidly suggested we go down to the beach. 415 steps later we get down there and Abbie has a meltdown. It was too pebbly, apparently. So we start back up the hill. I get part way up and realise I have massively overestimated my current level of stamina. Dan carries Abbie up the rest of the hill, gets the car and picks me up.

Now, during the course of Abbie's meltdown I had threatened not to take her for lunch. Never do that. It always results in self sabotage. On the way back up the hill in the car I re-negotiate the punishment (taking away the iPad for rest of day instead) and we finally all go to Hanbury's and have scrumptious fish and chips in relative peace and harmony.

Get home and realise despite best intentions we have totally forgotten to go to The Willows - or, indeed, any appropriate shop - to buy my mum's chap a birthday present. Gah.


Saturday - I stayed at my friend's house on Friday night. Went for breakfast on Saturday morning. Went in a few shops but then I started to feel dizzy and wanted to go home. I don't like shopping. Almost in the car and home free when my mobile rings. Cue my friend and I taking a detour via B&Q to acquire essential building materials, specifically 6 bags of decorative stone. Waited around for various members of staff to assist us with getting these huge bags in to the car boot, dropped my friend home then drove the car home on two wheels and proudly presented my husband with the elusive stones.

All was not calm on the home front. The render was going off as fast as they could mix it up and Dan later confessed to having had a bit of a "Basil Fawlty" moment that morning. A shovel had been thrown across our cul de sac.

Once the building works were done for the day we had a nice chilled afternoon and Abbie featured in her first ever Chudleigh Carnival that evening, dressed as an owl.


Sunday - We all spent a lovely day at home eating loads of food and playing in our new garden.

Monday - the kids went to nursery and I spent a WHOLE DAY working! Received further work which had been sent home from the office and realised that my boss was generously letting me have a go at all the files that had to date been languishing in the cabinet drawer labelled "headaches". I think you'll find that most lawyers have one, I certainly do. Some lawyers have several such drawers, but don't realise it. Those individuals are one of the most dangerous species of lawyer.

The partner who trained me always used to preface the handing over of such a file with "It will be good experience for you". Yes. Those files.

Working at home I am a captive audience for these files and I have thrown myself in to it.


Tuesday - Today was the best day EVER. I collected my new laundry hamper from Dunelm Mill (irrationally excited about that) and had McDonalds for lunch. Need I say more...?





  

Home working re-visited

I have made a breakthrough in home working. For anyone who is interested, here are the steps to take:

1. Moan repeatedly to long suffering family members about how you have deadlines but never get any quiet time to sit and work.

2. Scope out the entire house for an appropriate table. Clearly the kitchen table is no good as the KIDS are down there.

3. Identify suitable desk in three year old's bedroom. Clear off cuddly toys x 15.

4. Carry dining chair up stairs, lifting it entirely over one narrow stair gate and through another. Wonder briefly what one's surgeon would have to say about this sort of lifting. Decide that Lauren (1) is probably heavier than a chair and proceed anyway.

5. Carry laptop, files, dictation machine upstairs. Return downstairs for stapler, hole punch and pen.

6. Decide to have a look in the computer cupboard for pencil case too. Find pencil case and have a nostalgic episode about all the pens that are in there.

7. With everything all set up at the desk, decide that it is absolutely crucial to go back downstairs and make a cup of tea. Attempt to do so. Get sent back upstairs by my dad.

Seriously, it's just like revising for A-Levels all over again!! 

Chemo drag

Feeling nauseous, tired and fed up these last few days since having chemo. This side effect seems to be lasting longer than last time but I am still hopeful that it will pass soon like it did before.

Time seems to fly past in the days without really much being accomplished. This experience has made me aware that I am the most irresponsible homeworker ever. Sorry about that, work. I got some done and I will try again tomorrow. I did manage to get the computer on and set up and even managed to refill the ink in the printer. Never have to do that myself at the office. Realising I quite liked it at the office, actually. But not when feeling ill and at risk of catching whatever illness is going around there at any particular time.

Abbie is still on her little holiday, coming back tomorrow in time for her pre school. Lauren doesn't seem to have noticed she's not here - she's too busy bulldozing her way around the house and stealing food from the fridge!

Fake Hangover

Well second chemo has produced much the same as the first in terms of side effects. I would say you'll have switched off totally after 6 cycles of this sameness, but fear not as after one more cycle of FEC I move on to the "stronger" therefore scarier Taxotere for the last three cycles, which may bring with it a whole new host of unwelcome physical manifestations. So stay tuned!

For the past two days I have had what I call the fake hangover. All the symptoms of a hangover but cruelly without any of the drunken fun that usually precedes that feeling. Hungry but don't know what I want to eat; feel vaguely nauseous most of the time; fuzzy head; want to lie down but know that I can't as I have to get up, get ready and get Abbie's stuff packed as she is going on a two night holiday in her Grampy's motor home today.

Now I hate packing at the best of times, even for my own trips and holidays. So much to think about and remember, especially where kids' stuff is concerned. Think I will get the packing out of the way before I start getting ready myself.

The good thing about all this is that once the packing is done Abbie will be off on her holiday and Dan and I (well, Dan really...) can put together all her new garden toys on our recently-laid-and-just-cut-for-the-first-time turf, so, when Abbie returns on Tuesday she will have a lovely garden to play in. Then we are taking Lauren to see Abbie on her holiday - it's only in Brixham - just for the afternoon. Haven't broken this news to Abbie yet who seems to be looking forward to getting away and keeps trying to clarify that "Lauren isn't coming". Christ!

Second Chemo and other stories

Second chemo today. My sister kindly came with me. I was armed with numbing cream for the port site this time. Instructions were to put it on a dressing then stick the dressing down over the port half an hour or so before attending hospital.

All very well but when I stuck the dressing down - in the toilets at Occombe Farm, if you must know - the cream spread and started seeping out the side of the dressing. I didn't want a numb armpit too! Looks like I got one anyway, but happily there must still have been enough cream left in the correct place as I didn't even feel the "sharp scratch" (yeah, and the rest...) that the nurses always warn you about when sticking the needle in. That phrase "sharp scratch" appears to be a universal hospital euphemism for "I'm sticking a needle in you. Get real, of course it's going to hurt, but we'll pretend it won't by making you think it should only feel like a scratch therefore you are overreacting".

Except when you have numbing cream - tangible version of gas and air, very useful stuff.

Had a lovely nurse doing my chemo today. She had lived in Chudleigh until she moved a couple weeks ago so we all had lots of Chudleigh chat to talk about.

Managed to drive myself home after the chemo, the post-chemo lack of spatial awareness doesn't seem to affect driving although I have bashed in to a couple of doorways navigating around my home - on foot - since.

The other thing that has happened recently is that like a cat with its whiskers cut off, now I have no hair I have started repeatedly banging my head. For the past 3 years I have managed to operate the under stairs cupboard safely without ever hitting my head yet since having my head shaved I have smacked in to the door frame almost every time I've opened it! How embarrassing.

I have been wearing my wigs sometimes but they are a bit faffy so I have more often been wearing other types of headgear instead. The main drawback with wearing those is that when people see me in them I inevitably get what my Cancer Friend has hilariously termed the "Cancer Sadface". I'm sure you know it. Don't do it.

I am less subtle than my Cancer Friend - when a non blood relative who shall remain nameless came over to my house and started giving me that look, I dubbed it the "Dead Man Walking" look. Said relative still comes over and still does it, coupling it with small talk about "how unfair" illnesses are. Don't do that, either.

Accessing the port

Went to my hospital appointment today for my pre chemo blood test. The nurse looking after me says that we are going to "access the port" for the first time. Sounds like something off of Star Trek!

What actually happens is that she peruses her stash of "gripper" needles (needles with a plastic butterfly grip attached - for easy grip during heavy duty pulling...) before determining that the one inch long one will be sufficient.

She asks me whether I have been given the numbing cream. Erm, no, I haven't. Oh. Usually they recommend applying that to the port site half an hour before accessing it, so too late now, in other words.

I tell her to go ahead anyway, relying on the fact that a) I have very little feeling in the nerves in that area since my op anyway and b) as long as you're not stabbing my actual arm then you can do pretty much anything, love. Bizarre, I know, but the arm thing is just not for me, never has been.

So she grabs her gripper needle in one hand, grabs the port in the other hand (remember it's situated on my chest underneath healed over skin now ladies and gents) and sticks the needle in where she considers the middle of the port to be.

It didn't hurt. Had you going for a minute there though with that build up, didn't I?!

She flushes the port through then siphons off what must be AT LEAST 4 gallons of blood...

Then she gives me numbing cream supplies for next time and also reminds me that if I am ever in A&E I can let them know that the one inch gripper needle is the appropriate one for my port. As that will be at the forefront of my mind in an emergency situation. Perhaps I will have those instructions tattooed near the port site.

How big is a tattoo needle, again...?

Appointment merry go round

I went to hospital today. Hadn't been there for all of, oh, 24 hours? What a treat and a novelty.

Today was in fact an excellent hospital visit, as they go. Oncologist lady checked that I hadn't had any adverse effects outside the normal realms that they expect for chemo. By this I assume they mean that my head hadn't actually fallen off, given that just about everything else seems to be considered par for the course in terms of side effects.

I arrived 5 minutes early. Sat down to wait and noted that the lady I was seeing had nothing written on her "how many minutes late I am running" laminate poster. Her colleague, however, was running 50 minutes late. Bad luck, that doctor's patients - you win some, you lose some in cancer patient world and today was my day. I was called in before my actual appointment time (I know!) and was outta there within 5 minutes. Bargain.

As for yesterday's appointment, that was early too. Genetics lady agreed I was mentally prepared to take the test but had some concerns that my white blood cells might not have risen enough yet post-chemo to provide them with sufficient DNA to properly test. It was therefore decided that instead of stabbing my arm that day she would let me have the blood test pack to take to Ricky Grant Unit on Friday for the blood to be taken pre-chemo. From my port, not my dreaded arm. Yay! The theory also being that my white blood cell levels will be the best they are going to be at that point, and if they're not good enough then the chemo won't be going ahead either anyway.

Back to hospital tomorrow afternoon for more blood test fun and games to establish my white cell status ready for Friday.

Fit

Well here I am sat in the hospital cafe waiting for my genetics appointment as I type. See Helen, I do use the iPad for something other than playing games! Lol.

Assuming that following the "Counselling" part they determine that I am mentally ready and prepared to take and receive the result of a Genetics test, I suspect that this appointment will involve a blood test. I further suspect that the person taking the blood won't be willing to access my port and will want to stab my arm instead. Gah.

Had my hair cut off on Friday - grade 0.5. Feels like a hedgehog, looks surprisingly ok. The wigs look much less 80's mullet now they've been trimmed as well.

In fact, after the hair cutting I returned to my friend's house with my short wig on. Encountered her son and one of his mates in the drive and like a typical woman driver had to get the mate to move his car so that I could get in. My friend's son later reported back to me that his mate took one look at me in my car and pronounced me "fit". Bless him, it's all fake! Nice to receive a compliment though.

I raised £302 for the Ricky Grant Unit. Thank you so much to everybody who has contributed, especially my fabulous work colleagues who contributed more than £200 of that sponsorship. I am humbled and grateful for all your generous donations.

Dan and I spent an absolutely lovely weekend in Bude courtesy of the fantastic Hebasca hotel. Check them out at www.hebasca.co.uk. Really gorgeous place which has just opened this season. Fabulous grill restaurant too, thank you Helen and Jono for shouting us a yummy dinner :)

Spent Sunday relaxing and reading the papers by the beach before heading back to collect the kids from my mum who had looked after them for us. Discovered that my mum's chap had bought them a paddling pool, in the very loose sense of the word given that it is about 8x4 feet. They'll refuse to get in Lauren's 4 ft round paddling pool at home now after trying that! 

Party Trick

Nowhere near as exciting as the title sounds, but my current party trick is demonstrating to people how if I don't like the way my hair is sitting today then I can just grab the offending section in my hand and pull it clean out. Have shown Dan and my Dad. Freaky. This morning I even plucked out a stray eyebrow without the aid of tweezers and with no feeling of pain.

At least this means the drugs are working - I'd be a little worried if they weren't capable of killing something as innocuous as a hair follicle.

Went to the hospital today, had my port insertion site checked, all uneventful and healing spiffingly.

Just warming up now for another five out of six day appointment marathon next week. I will have (deep breath...): Genetics on Monday - to see if I have mutant genes as well as mutant tumours, Oncologist on Tuesday - to check that the first chemo cycle and side effects were ok and that nothing needs to be tweaked, Ricky Grant Unit on Wednesday - for a blood test to check that my white blood cell and other levels are acceptable for the next chemo cycle, Day off on Thursday, Ricky Grant Unit for second chemo on Friday then Turner Ward for white blood cell boosting injection on Saturday.

It's a bit like one of those "I went to the supermarket and I bought..." games really!

Infection risk stops play

My head shave and wig titivation (oh, the irony...) has been postponed until Friday as my hairdresser developed a sore throat and given that I am now within the peak infection risk period and supposed to be avoiding people with obvious symptoms of illness, we thought it best to leave it for today.

So I may end up experiencing proper hair loss after all between now and Friday. It is hanging on at the moment though.

A friend I have known for years has co-incidentally been going through something very similar to me recently. She is now colloquially known amongst my chums from my other walks of life (who don't know her personally) as my Cancer Friend. As you can imagine, she's thrilled to bits by that nickname.

Anyway, I digress. The point was that my Cancer Friend (Aww, Cancer Friend!) recommended I look on you tube for videos about head covering techniques. What a fantastic idea and an as yet completely untapped shopping opportunity! I'm gonna need more than one head at this rate, the number of items I've ordered.

In other news, I still do not have to go back to hospital until Thursday all being well. I have had so much time I even started doing some work today until technical problems related to remote networking arose (don't they always?) - frozen dictation screen, if you must know. This working from home lark is not as straightforward as it sounds. 

At least the iPad is working. Now where's my credit card gone, again...?