Tosoast for Breakfast

Saturday, February 25, 2006

Back for a Bit

The drains have been done bar a man hole cover, and we are awaiting the report and bill from the company. As are the insurers, who will then decide how much (if any) they will pay for. So on Wednesday, Paul hobbled to work, having done his knee in again. (and what did they put him to cover? PE! He could barely walk..) I came home and cried. There was no longer an open sewer outside, but mud had been trodden into our new kitchen and bathroom, and considering what might have been contained in that mud... I then spent the next hour or so on the phone ringing round various cleaning companies, asking if there was any chance...
Two had numbers unobtainable. Several had answering machines on. A couple said they would ring back but didn't. One just laughed at me 'Molly Maids couldn't come out at such short notice'. Others said they couldn't today, but later in the week... Finally one company Did ring back to say they could come out, and later in the afternoon, No limits came round, sized up the job, got my hard earned cash, and did an excellent job. No uniform, no frills, just got on with it.
So we're now back home, confident I'm not going to catch some nasty stomach bug. I do have a cold, that I've had around 10 days now. It's improving, and apparently my white blood cells are up and fighting it. It was at it's worst in the hotel with a nasty persistent cough which is not what you want when sharing a room with a 2 year old daughter.
So, having had a taste of the high life and hotel living, we're planning on going on holiday soon and staying in a cottage for a few nights. This time for a break.

Tearing my hair out

On the Monday the day before I had my line put in, I noticed a few more hairs in the bath than normal. By Thursday, hairs were coming out whenever I ran my hands through my hair. The toilet and drains at home also became blocked. No, not because of my hair! Because they are 100 years old and falling apart, or because they had become damaged with bricks through them. We (and the insurers) are still awaiting the report from the drains people. Thursday night we ended up round the corner at a friends house since he was away on holiday and we had his keys (never leave your house keys with the Harrisons!). By Friday night we were ensconced at the Old Farm Hotel in Bournville. This is a lovely hotel with excellent full English breakfasts and very friendly. But not exactly what we were planning. We shared a room with Eleanor which meant we had to creep in very quietly when we went to bed and watch her wake up anyway. We spent the evenings in the hotel bar with the baby intercom on. By Saturday I was quite literally tearing my hair out.
It was quite odd. I'd get hold of a clump of hair, tug gently, and the whole clump came out. I wore a buff scarf all Friday and Saturday, and by Saturday night it was getting very frustrating. It hurt if it was brushed the wrong way (a bit like if you have your hair tied back too tight) and looked horrible, and hairs were getting everywhere!
So, on Saturday night, we went round to a friend's house and Paul clippered my hair and gave me a no. 1 all over. Photos can be found on Paul's blog. Eleanor when she first saw me just held her hand to her mouth then pointed at me. She's asked me several times since where my hair has gone. Although I look most 'normal' in my wig (I also have a 'fringe wig' to go under hats) I am most comfortable wearing nothing (on my head!) or a buff. At one point I was on the phone in the hotel reception when I realised that I wasn't wearing anything on my head. The following morning I had a full head of hair, In the evening, just a head scarf...
I've worn the wig twice so far, both times to work. It's not the most comfortable of items, but I guess I'll get used to it. On Wednesday, I got fed up of even the No 1, as it was irritating when brushed the wrong way, and every time I rubbed by head, there were showers of hairs coming out. So Paul shaved my head completely. Wearing a wig after that was far more comfortable, though wearing nothing is somewhat chilly. Meanwhile, I've just had an offer through the post of a free family photo session and photo from a local(ish) photographer (in the hopes that we'll then spend hundreds of pounds on copies and enlargements!). So I'm considering booking a session and getting photos done in all the different styles...

Valentines Day: Straight in to the Jugular

Tuesday was due to be my second chemo day, but then I also got a letter telling me I was to have my Hickman line put in. So, 7am on Tuesday morning, after a light breakfast before 6, Paul dropped me off on the ward. The nurse showing me to my bed made it very clear that Paul was not welcome to stay and support me, so I spent the morning waiting for results of a blood test before I could go to theatre, getting more and more nervous. Although I have had several operations before now, this was due to be under local with sedative, and I was dreading it. I was also trying to make sure that I would have my chemo later in the day (you don't expect different departments to coordinate, surely?)
Finally, after watching the other people in the ward have dinner, I was given a trendy hospital gown and wheeled down to the x ray theatre. Here my line was to be inserted under the guidance of x rays to make sure it went down to right vessel ad didn't puncture a lung or anything (the joys of being told all the possible side effects before you sign the consent form!)
I then waited for ages in an anteroom which was piled high with boxes and with lead aprons with cat designs all over them. By this point I was quite upset, especially since there was a bloke in the next cubicle, who had hi wife with him. If she could be there, why couldn't Paul? I was finally seen by a nurse who provided necessary tissues, then by the surgeon. The surgeon was wearing a lead apron: but his was plain black and looked rather more like a Roman soldier than a worker in a cat home. The surgeon was also quite dishy, which helped. And he explained properly what was about to happen. I had spoken to a registrar earlier, who said that the line would go into one of the 'big veins that goes into your heart' : The surgeon told me that he preferred to go in on the other side from previous surgery, and to either use the sub clavian or the jugular, but the jugular was better. Apparently with the subclavian vein there is a possibility if it gets blocked that your arm could swell, and considering I’m at risk of that on the left anyway, I don't want that possibility on the right too. But with the jugular, since there are two jugulae (?) I'm unlikely to end up with a swollen head (!)
The surgeon the looked at the line they had provided and told them to take it away and bring a groshong line instead: 'you don’t want that cheap rubbish'
They gave me a choice of walking into theatre or going in in style on the bed. Considering the open nature of hospital gowns, I chose the stylish option. I was then hooked up to various machines measuring my heart rate, oxygen saturation and breathing. I spent a fascinating few minutes changing my breathing and trying to lower my heart rate, before they put me on oxygen and I had less control over the readings. They then injected the first (double) amount of sedative and started cleaning me up. Beyond that I am only vaguely aware that something happened: It wasn't like being out for a general, but it wasn't as awful as I thought it'd be. I now have a stitch on my collar bone, and a tube coming out of the side of my right breast (they told me that I would still be able to wear plunging necklines. I'm not sure whether that means I’ll be able to start wearing plunging necklines...)
Chemo, when I finally got there, was a doddle. They plugged me in, and let it drip. And blood tests too will be easier. But I will need to have the system flushed each week and the dressing changed. That joy is for next Tuesday.

A note about dates: I wrote this on my Psion whilst in the hotel last week. So next Tuesday has already happened. I've had the stitch out using a curved razor blade thing. The nurse was tugging quite hard at the stich and I had visions of it suddenly giving and.... but it didn't. The flush, dressing change and blood test went fine.

Monday, February 13, 2006


At the end of the first cycle: tomorrow I should have my second chemo session. I still have all my hair (well all that's left after the hair chop!). Not done too bad at all really. I felt a little bit sick the first few days, and have been off chocolate until the last couple of days. (amazing, but true). I felt very tired over the first weekend, but well enough to get into work in the middle of the second week. I went in for two days for a course that I'd organised, and was determined not to miss if I could help it. I coped with that very well, especially as part of it involved lying flat on the floor, while my colleagues measured me to see if I was asymmetrical or not. (I'm not, or at least my ribs aren't.)
Back to the Breast Clinic today: an hour and 3/4 wait for a short appointment to discuss my lack of side effects, and to get the last of my results. I am her2 negative: that means that Herceptin would do nothing for me. It also means that my cancer was somewhat less aggressive than if I was positive. I will also be saving the NHS money by not having to take it.
Tomorrow I go in to have my Hickman line put in. I am allowed to have a 'light breakfast' before.... 6am, and have to be in by 7.30. We are dropping Eleanor off at very wonderful and long suffering friends at 7am (and this during half term) who will take her to nursery. If my Hickman line is done early enough I should still be able to have my Chemo done as well. A thrilling way to spend Valentine's day.
In fact, the whole timetable seems calculated to stop any celebrations. I'm having chemo on Paul's birthday and our wedding anniversary, and an injection on my birthday.
I'm unlikely to be able to bathe with a Hickman line in situ (clothes pegs will be offered to all visitors!) so I had luxury tonight: wine, chocolates, candles, book, and a long soak in the new bath.
And now to bed, to prepare for an early start tomorrow...

Saturday, February 04, 2006

Shorter hair, but still upright!

I've got through to Saturday night, and I'm still in one piece. I've finished most of my medication this time round, except for the antibiotics which have begun tasting horrible. So far I've got away with feeling a little bit sick occasionally, somewhat tired, and a dry mouth. We had went to Frankie and Bennies rather than our normal Balti last night as a concession to my stomach.
Paul is currently uploading photos from last Wednesday. Louise came up for the day to assist with wig shopping and hair cutting, along with absently rearranging the contents of the fridge in a spare moment (one shelf for dairy, one for meat...).
The wig place is very plush and private, with pleasant staff. I discussed my current hairstyle with 'Tina' (ie, no style, no hassle).. the words she used most often in describing it were 'disheveled' and 'messy': I'm not sure if that was entirely the message I intended to get over!
The wigs all looked very convincing (have a look yourselves!) but I'm not sure Tina was totally impressed at my request to try on the long blond wig. It has to be done though. I was advised to go for one with a bit of a fringe, otherwise the 'wiggy' bit would show, and I can't just tie my hair back now (more 'wiggy' bits), so a shorter style was in order. The colour match was very good too (not with all the wigs I tried on, but they could have ordered them...) except they missed out the white hairs.
One of the wigs was even called 'Lucy' but that one was a bit too curly.
In the end we narrowed it down to two: one that looked like my hair when it has just been cut, and the other that looked more like my hair does after I've washed it, gone to bed with it wet and then brushed it. However, the neat style took less effort as a wig than the messy style, which has to be styled and arranged to have just the right amount of messiness. We arranged for Paul and Eleanor to come the following day to have their say.
Then back to Brum for the haircut. I'd told the hairdresser I wanted two appointments, one for a restyle, one for a trim. I explained when I got there how radical the restyle was to be. She took it well, though I don't think chopping off long hair is the task she looked forward to. She did an excellent job, and I now have a short and funky hairstyle... the shortest it's been since I was about 6 (I can still remember being mistaken for a boy by a bus driver in the mid 70's!).

Wednesday, February 01, 2006


First Chemotherapy yesterday. We were warned that we might have to wait a long time before being seen: you announce your presence, they tell pharmacy, pharmacy take up to 2 hours to prepare your drugs, Then you get called in. So I went prepared with book and knitting, and planned a trip into Harborne in the interim too. As it was, we arrived, asked to see the trial nurse, were told she wasn't around, waited a bit, asked if they could ring the trial nurse, a message was left on her answering machine, went into the waiting room, saw the trial nurse, got checked out by a doc to make sure a queried infection wasn't a problem (not sure, it might be cellulitis, might not, have some more antibiotics just in case) and then went in for Chemo.
We'd been having some discussions about how you describe the process of sitting there with a drip in you for a while. Are you being dripped? Injected? Infused? We asked the chemo nurse and came to the conclusion that I was being infused, which made me feel like a cup of tea. Actually I felt more like a jelly. Having gone through the op with no qualms (having had several in recent years!) I was downright scared of the chemo.
I had cause.
I was sat in a comfy chair and my hand warmed with a wheat pad. They like to put the drip in your hand at the beginning, cos once one bit of the vein has had the chemo drug pumped through it they then can't use that bit of vein again, and either have to insert the drip further up on the same vein the next time, or use another vein.
The first needle bruised me. I was then moved into a private room, in need of tissues and some reassurance. In fact I was in floods and being a complete drip about having the drip inserted. The second attempt on a different vein worked for a bit then stopped. The third (second opinion sought by this time)hit a valve. The fourth and fifth attempts didn't work. The sixth, in the elbow, worked. So that is that for that particular vein. My left arm can't be used as I have to avoid injury as I have no lymph nodes in my armpit. They reckon they can get one more treatment in, using the only other visible vein, then I'm going to have to have a Hickman Line inserted. This will mean that all the drugs and blood tests can be done using this, so each individual treatment will be easier. However it will mean having (yet another) minor operation.
Once the drip was inserted, the chemo nurse then injected the Epirubicin into the tube (and therefore me!) It was a disconcerting red colour and took a good while to go in. This was followed by another couple of syringes of other drugs (antiemetics I think), one of which she warned me could feel like I was sitting on nettles for a minute. And it did, but not too bad. Maybe small nettles.
Meanwhile, Paul was sent to the pharmacy, to collect 7 different medications, 6 of which we had to pay for. I've drawn up a chart, as one of them is 4 times a day on an empty stomach for 5 days then discard the rest; one 3 times a day with meals for 3 days then as needed; one once a day; one 2 tablets four times a day for 5 days... I think... Plus a mouthwash, and suppositories (if needed) (not to be confused).
I've been back to the hospital today for an injection, then I need to go back next Tuesday for a bloodtest, and the following Tuesday for my next lot of Chemo. And more tablets.
Meanwhile, the only side effect I've experienced is pink wee (only temporary, I'm assured!) I've got around a fortnight left of my hair, so I'm going to get a wig this afternoon, and get my haircut, with a friend from Poly, Louise, who is coming up anytime soon. Photos will appear on the website!