Tuesday, 30 October 2012

Being Mummy

Monday is almost free of medical appointments (Zoladex jab - I made the mistake of looking at the needle and discovering it is really rather large) and it is also half term. After a weekend of DS being a horrible two year old (everything is "NO!"), TN is back to put things on an even keel.

The four of us have a lovely day, carving pumpkins, making Halloween decorations and biscuits and making the Christmas cake. Gloriously domestic and reassuringly normal. Another boost I badly needed after last week and good for the children to see Mummy being, well, Mummy for a little while.

Unexpected bonuses

The bonuses of the delay to cycle 2 are:

1) The portacath can go in
2) I have a prescription to sit down and rest
3) My taste for sweet things and wine has returned! Won't help with the weight, but helps with the head a bit...

Plug and play

Immediately after the reflexologist comes the consultation with the radiologist, so back to hospital it is.

There's some suggestion that Tuesday's theatre slot, around which we have rearranged everything including my next Zoladex injection (not an easy task, had to play the chemo patient card for that one which I don't like doing but thank goodness it works and thank goodness it exists), may not be available. This renders DH, already grumpy about something completely unrelated, absolutely furious and leaves him making all sorts of super assertive noises about not putting up with this. I tell him to hold on until we know there's a problem.

He then further blots his copybook by answering for me every question the consultant asks. I have cancer, I am neither mute nor stupid as a result (although the drugs are messing with my memory. Well, that's my story and I'm sticking to it) so when the consultant pops out for a second I tell him to calm down and keep quiet unless I do miss something out.

The procedure seems both routine and straightforward, and they do it under sedation. This will be rather heavier than that for the colonoscopy; frankly I'm not too bothered as long as there's no Picolax involved. The portacath itself is bigger than I expected, being about the size of a ten pence piece around and about a centimetre deep.  It's titanium, so fine with imaging machinery and airport scanners. It's also pink. I'm tempted to ask what other colours they have.

My line on the surgery - we have rearranged everything around a Tuesday date so please can we go with that - works and the date is duly confirmed. So no more hand cannulas for the rest of my treatment. This also cheers me up; I hadn't realised how much the cannulas were bothering me and had been bothering me since the CT scan.


I had already booked the reflexologist for Friday afternoon, in the hope of helping my system cope with the immediate aftermath of cycle 2. Given the low neutrophil count, I reckon my system could still do with a boost and mentally I certainly could, so I go anyway.

The reflexologist is actually an old family friend who happens to live not far away. My parents act as the taxi as although I can drive myself the appointment had been arranged on the basis that I wouldn't be able to, and I reckoned Mum and Dad would like the chance of a catch up with her husband whilst she works her magic.

I have pretty clear lines when it comes to alternative medicine. Some is proven to work, or at least has some basis in reality and no negative side effects. Into this category fall acupuncture and reflexology, both of which I've had and both of which have worked for me before. Some therapies are just too "out there" for me and make no logical sense, such as reiki and crystal therapy. They work for some people, but they're a leap too far for me. Normally I'd go for acupuncture but frankly I've had enough of needles and all the practitioners I know are in London. I had reflexology when I was pregnant with DD, who was overdue and making me grumpy, and the reflexologist (same lady) pressed on a particular area of my foot, pointed out the swelling there and stated that that area was connected to my uterus. I was sceptical, until after DD was born when that swelling, which was very localised so not swollen pregnant lady ankles, disappeared. Proof enough for me, and anyway I like a nice foot massage.

She is gentle and soothing, yet still manages to tick me off for not resting enough! For 45 minutes she  works on my feet, declaring that most of my organs seem to be ok and taking the time to give my kidneys and spleen a boost. She also picks up on issues with my sciatic nerve, which relate to poor posture when carrying my giant son (that classic sticking out of the hip to rest your baby on it is not, surprise surprise, any good for your back) that then causes problems in my calf when I run. I hadn't mentioned that to her at all, nor the upper back and neck tension I've been experiencing because of poor posture post-surgery owing to compromised core muscles and an old rugby injury that she also picks up on.

Interestingly she tells me to check the ingredients of the fruit tea I've been drinking as an alternative to regular tea, as I thought the fruit tea would be more hydrating. Apparently lots of them contain hibiscus, which can cause stomach cramps. When I get home and check, she's right. All of them do. More water, less tea then. Her other nutritional advice is lots of anti-oxidants.

When she has finished I feel much better mentally, and generally boosted. Even if nothing else happens, the mental boost is worth it. I hadn't realised quite how down I'd become until it lifted a bit.

Thursday, 25 October 2012

Snakes and ladders

And I just hit a snake.

Thursdays are always chaos in this house as commutes and school run and breakfast all collide with the cleaner coming in. This morning was worse as DD woke up last night with a temperature and was still suffering when she woke, so no school run, no activities for DS and DH at home to take me to hospital, which all adds up to a lot of people under foot by 8.30.

Despite this, DH and I make good time and arrive early. The room is stiflingly hot and right next to a building site, but at least has more natural light than last time. There's a weight check and blood pressure check and I am not particularly pleased to find that I've put on half a kilo since my last weigh in. According to the HCA who is doing the checks, some people lose weight and some put it on. Neither is in my plan - given that exercise seems to be a non-starter for me I guess that means a bit more diet control. However, all is within tolerance for chemo so we wait for someone to come and take the bloods.

One of the staff nurses, who I recognise from last time, comes to see me. She asks how I've been and I tell her about the side effects, all of which she indicates are perfectly normal. She puts the cannula in my right hand but seems to struggle to get blood out of it; even once it is flowing properly she finds flushing it afterwards tricky. Finally satisfied, she takes the blood off to the lab.

DH and I sit at opposite sides of the room, not really talking but playing on our respective phones. I read an Internet forum in an attempt to distract myself, but half of me is drifting off to sleep as the room is so warm. My lunch order is taken and coffee is brought - one thing the rest week has done is restore my taste for sweet things, coffee and wine. But nothing much punctures the minutes as the clock ticks on towards midday.

At 11.45 the staff nurse comes back. My neutrophil level - part of the white blood cell count - is 1.4 and the chemotherapy protocol requires that it be at least 2. No chemo today. The staff nurse pats my knee and says she will go and see what the arrangements are for fitting my deep vein line. When she has gone I have a proper cry. It's partly frustration at a set back at this early point and partly fury that next week's arrangements to go away are now completely messed up. It's also quite a lot of despair. How can I get over this, get on with my life, if I can't even get through one cycle of chemo?

DH is determined to be chipper about it all and tells me, in so many words, to pull myself together. I tell him I want to wallow in it for a bit and that frankly I'm allowed to. We go and have a nice lunch and do a couple of chores, including picking up our latest animation cell acquisition from the framers. The cell looks gorgeous and that at least cheers me up a bit, as does going and playing on all the motorbikes in the showroom whilst DH sorts out something with his bike.

But when I get home I'm shattered. Drained out behind the eyes. I make the calls I have to make to rejig the diary for the next few days then give up and go and sit on the sofa and watch telly with my children.

Tuesday, 23 October 2012

A doctor calls

Tuesday evening and TN is just putting the children to bed whilst I idle around downstairs (gathering strength to put them to bed - I might be able to lift DS but that doesn't make him any easier to persuade to get into bed, particularly now we have taken the side off his cot so he is in a Big Boy Bed from which, unfortunately, he can escape) when the phone rings. It's the oncologist. She will be on holiday on Thursday so she wants to talk about the side effects I have been experiencing. I know she's  busy, especially if she's ringing round all her patients, so I keep it to the key concerns that I was going to raise with her anyway.

Chief amongst these is the effect the iv had on my left hand. Two and a half weeks later and my hand is still feeling bruised. She surprises me by not suggesting what I thought she would suggest - turning the drip down - but rather that we put in a deep vein line, either a PICC or a portacath. Apparently she has been receiving more reports of this problem with oxaliplatin, and putting it into a bigger vein seems to help. The procedure is done under sedation; sadly it won't be for this time round but it will be for round three. Somehow talking to her makes me feel more positive again. She's on my side and understands. Not that lots of people aren't on my side - far from it - but she can fix stuff.

Cycle two approaches

As cycle two approaches, my mood isn't getting better. I feel oddly bereft when I have no drugs to take in the rest week and I feel exhausted. At a guess, it's my body trying to recover from the two week assault but it is pulling my mood down as well. DH is working hard and late, and by the time he gets back I am too tired for much of anything so I'm in bed. I don't really want to grumble to him, anyway - it's not what he needs and it is only grumbling, I know I'll pick up.

I have been out and about and whilst that doesn't help with the tiredness it does help with the mood. A couple of nice lunches with old and good friends, who I can give the potted update to and then talk about rubbish and mindless gossip and things that can happen when all this is done. I also went to the hairdresser and, following the advice of the Macmillan nurse, got my long hair chopped short. It turned out that my hairdresser, who I've been seeing for years, has always wanted to cut my hair short  and already had planned what he would do if the opportunity arose! Fingers crossed that will lessen the strain on the hair and less of it will break off. Although the Zoladex may have a similar effect - when I was pregnant I never shed much hair and never grew much either and my eyebrows don't seem to be growing as fast as usual so maybe the one will cancel out the other?

The sad thing was that my hairdresser, after he'd got over the shock of my news, said that he sees four women a year who are in the same position. That's one hairdresser in one salon in the middle of London. How wrong is that? How widespread is this shit?

Wednesday, 17 October 2012


None whatsoever. Zip. Nil. Niet. Zero.

After ten days of my saintly in-laws being here and generally shaming me with their ability to do more in a day than I usually manage in a week, DH and I were really looking forward to having the house back. Much as we love having people around, it's nice to have our space back too.

But the smallest of tasks renders me drained. A walk to the supermarket and some light shopping = 30 minutes' sit down and complete inability to concentrate or process information. DD and I had a major falling out last night because she wasn't doing as I asked and I didn't have the wit to think of a less confrontational way to sort it out. And I can't even begin to describe the lethargy that comes over me when I contemplate the mound of emails I have to write. All of which I know sounds incredibly ungrateful and brattish and believe me I don't mean to - the number of people who pop up and check on me is humbling and marvellous - but I feel utterly wrung out. The decision to take a four month sign off from the doctor is looking like a good one. Now I have to reconcile that decision with my usual need to live life at the speed limit plus ten per cent. Slowing down is hard to do.

Thursday, 11 October 2012

There's cancer and there's cancer

This might be controversial, and is purely my own position (blinded by denial), but I think there's cancer and there's cancer. I was watching a trailer for a programme showing a number of cancer victims who have got together and formed a choir. The voice over tells stories of bravery and courage and fight, aided by the power of music. I can't identify with them at all. Then today I was reading a thread on Mumsnet where lots of people were paying tribute to loved ones who had fought and mostly lost their battles. Still can't identify with this version of cancer. It is a terrible disease but I don't feel like a victim, or brave. I just have to get on with it.

Side effects

One week and 84 tablets later, I am starting to see a clearer picture of the side effects of this chemo. That is to say as clear as mud. I can't pin down at all what might happen, when or in response to what. This does not sit well with my control freak nature but I guess I'd better sit back and get on with:

1) Peripheral neuropathy. Pins and needles, mostly in my fingers and the arm the drip was in. The first day or so of extreme cold sensitivity has given way to cumulative sensitivity in that I can't be in the cold for too long. It is October. This may be tricky.

2) Jaw pain. Again more severe day one to three (where drip day is day one); on eating the first mouthful causes pain in the soft tissue of my jaw hinge. Hospital's initial advice, from the on call doctor via duty matron out of hours, was that this had nothing to do with the chemo. That somehow seemed unlikely given it wasn't happening the day before chemo. Duty matron later called and confirmed it was a known one and to keep an eye on it. This may be tricky.

3) Facial tics. These seem to be a response to cold too, triggering my eyes ticcing shut for 30 seconds or so on one occasion (fortunately when I was walking on the pavement). Also in response to the faces you pull when you're doing essential things like plucking eyebrows or putting on mascara - that left me with a cat's bum pout that at least made me realise that Botox is probably never going to be a good idea.

4) Muscle weakness. I can hold a pen, and type, but with much less accuracy. My handwriting is rotten at the best of times but this really isn't going to help. I may be forced to requalify as a doctor.

5) Nausea. Pretty much a given and most of the drugs I have are to combat this. In the interests of science I conducted an hour long investigation into whether or not watching The Great British Bake Off is good for nausea. I shan't be looking at creme patisserie again. Eating small plain things, like crackers, can help, but apart from putting me off sweet stuff my appetite seems unaffected.

6) Tiredness. At random times and very suddenly. So I sit down and have a rest. At least I have that option available.

7) Dry/tacky mouth with a bad taste to it.

8) Needing to pee in the middle of the night.

Wonder what else will come up?

Monday, 8 October 2012

Things you should never get caught with in your handbag

Small bags containing white powder. In my case it is L-Glutamine, to counteract the peripheral neuropathy from the chemo. However, I'm slightly nervous at taking it into a private members' club in London where signs abound telling members and guests that drug taking will not be tolerated.

The reason I am taking my drugs to a private members' club is that DH and I have a wedding to go to, the Saturday after my chemo starts. Nothing on earth, short of actual coma, would make me miss this. It is the wedding of my text hugger friend and her long term boyfriend and after their two year battle with her breast cancer she is clear and her hair is starting to grow back. They both look radiantly happy and she looks beautiful. The small ceremony is informal, and the registrar who performs the service joins in the fun.

There are long hugs between the four of us. I hope we are in as good a shape as a couple by the end of this.

You want to put THAT in my veins?

C- day has arrived. Like D-Day, but with less chance of being revisited by Stephen Spielberg. Like D-Day, there is a lot of waiting around for action. At least my day is designed to keep me alive though.

DH and I arrive, book in and are shown to the room, which is a fairly bog standard hospital room except for the crucifix in the corner - this hospital's roots are in the Catholic church and I don't, despite being a Christian, feel all that comforted. It feels a bit sinister, like there's a lack of hope in the room, a black splinter in the pale blue paintwork.  I know I should feel quite the contrary.

We wait for a bit, and nothing happens. So I toddle off to the loo, wanting, how can I put this, a bit of time to perform the necessary function. At which point the consultant arrives, and has left again before I can rearrange myself to come out and see her. Then I don't dare move in case she comes back, despite the fact that not going to the loo will doubtless make the constipation situation worse, not better. She does eventually come back with the Macmillan nurse in tow and explains again what will happen today, getting my signature on the consent form we realised yesterday I hadn't signed.

And we wait for a bit longer, so I go off to the loo again. Which is when the nurse comes in. Back to the chair to wait...

Cannula in, the first drip up is straight saline to keep the vein and port open until they're ready. Then a pack of glucose - 10 mins. Then a pack of magnesium and calcium goes in over the course of the next hour to combat the peripheral neuropathy that's one of the major side effects of the Oxaliplatin. After that, a syringe of steroids and a syringe full of anti-sickness drugs before the main event. By this point I've been wired up to a drip of some description for the better part of 2 hours already. Cutting up my lunch - a jacket potato - proves impossible and I manage to distract DH's attention from his iPad game for long enough to get him to do it for me.

Aha, the main course. Which arrives in a clear plastic box sealed with bright yellow tape that says "TOXIC" and carries pictures of skulls and crossbones. Nothing like making it obvious that this is kill or cure. The nurse doesn't seem to see the joke though. Maybe if you do this all the time you don't find it surreal any more. The first 30 minutes are ok, nothing happens. Then my arm starts to tingle. Then I have pins and needles in my whole hand, reaching up my arm and I decide that this probably isn't just me sitting awkwardly. The nurse brings a warm pad wrapped in a high tech cover (pillowcase) to go over my arm, which helps a bit. Other than that there is nothing to do but sit and wait for the poison to go in, which it does over the next 2 hours.

For dessert, there is a final flush of glucose. The drip rate is too high and my vein is throbbing, so the nurse turns it down - it just means it takes longer. All done by 3.30; having arrived at 10 am and we leave with an enormous pharmacy bag containing the tablet chemo and more stuff to manage side effects. The steroids, apparently, should not be taken after 5 pm because they make you hyper. The pill-popping timetable is too complicated for me to get my head round.

The autumn sunshine is extra bright as we leave, and I have that slightly disorientated feeling that you get when you leave the cinema in daylight, as if somehow the day should be all done because my one task has been done. The next obvious side effect hits - the slightest touch of cold feels like ice. Air, water, door handles, taps, everything. First stop is the bike shop for some gloves, and I find a thin woolly pair with a little grip to them that will at least let me hold a steering wheel properly once I'm back in the driving seat.

Sometimes you don't have the words

The morning of the first day of chemo I take DD to school. She's unusually clingy and won't stay in the class line because she says the boys are making fun of her (this is my daughter we're talking about so normally she wouldn't take any rubbish). I squat down to her level to try and find out what's wrong, so as the classes move in to the school we are both little people in a forest of adult legs. But she won't be drawn on it until I mention the word "hospital". I was trying not to lead her, but I hit the nail on the head and can only watch as her face crumples and she clings to me like she's drowning, incoherently sobbing into my coat.

I'm not supposed to, but I lift her up and cuddle her until all the rest of her class have gone in. Then I find her teacher and hand her over, explaining through my own tears what's happening. The poor woman - every time I've met her she's had to cope with a family drama. Yet another reason not to take up teaching...

As I leave I bump into a former neighbour who offers a shoulder to cry on. She is, as always, offering to do anything we might need but this is the best thing she can do for me right now.

When I phone the school office later, the secretary says all is well in DD's class. When I get home from hospital, DD is ecstatic to see me. Turns out she didn't realise I was coming home today and she thought I was staying in hospital. Another lesson learnt.

Thursday, 4 October 2012


My Mum and Dad are babysitting so we can go out. Mum arrives bearing a parcel from Macmillan, containing all the booklets they sent her after she had a chat with their support helpline. I have my bundle of Macmillan leaflets courtesy of the nurse at today's consultation. Mum and I play Snap with the leaflets on our kitchen counter. We have only one in common, about chemotherapy as a treatment. Clearly there is a lot of reading to do - the pile is, in total, about 7 inches thick and covers everything from the medical side about the cancer and the treatment to the side effects of treatment and a number of support issues in between. Nutrition, telling your children, alternative remedies - they're all covered. I think having these as reference will be useful and I wish I'd had them at first diagnosis. Maybe not all of them as that might be too much, but the ones about the cancer itself and telling the children would have been useful.


It's Wednesday and it is back to hospital to see the Macmillan nurse. She has a large pile of booklets on her desk, including my hospital record which is a centimetre thick.

Today's appointment is actually not clinical - the only clinical activity is taking my height and weight so that my dosage can be calculated. Rather there is a lot of talking, explaining exactly what will happen and going over the side effects and what I should do about them. She is very focused on how much of last week's consultation I have understood, and gives me the opportunity to ask questions. She is also very helpful on management of side effects, offering strong suggestions such as using a mouthwash to prevent ulcers and bringing a scarf to sessions because the cold air can make you feel like your throat is closing up. The main potential side effects seem to be: neuropathy - pins and needles - in the hands and feet, hair thinning (she suggests I cut my shoulder length hair to lessen the weight so it breaks less), constipation (from the anti-sickness drugs), diahorrea (from the chemo drugs), mouth ulcers, increased sensitivity to cold, dry hands and feet, brittle nails and fatigue. I'm sure there's a couple in there that I have forgotten. There's a booklet, a bit like the maternity notes you get given here to carry around with you, that comes with a grid listing the side effects and grading their severity from white, which means call us to discuss managing it, then green, amber and red. If you're in the amber or red zone you're in trouble. Side effects apart there is help for everything if we need it - financial advice, emotional support, day-to-day practicalities. We're very lucky we don't need it right now, but it's comforting to know it's there if we do.

What I had assumed was that as week 3 is rest week, this would be my best week for going out and doing stuff. Apparently not - 7 to 10 days post chemo is when the body is at its lowest so the immune system is most compromised and the fatigue is worst. However, as I've already decided to get on with things, make arrangements and then break them if it's all too much, this won't really make a difference.

DH and I leave feeling a lot better informed. He has asked once or twice if I'm scared. Actually, I'm not. This needs doing, so let's just get on with it shall we?

Wednesday night DH and I go out for pre-chemo dinner. This involves rare steak, seafood, soft boiled eggs and a sampling of DH's cheese course so I can have my last taste of blue cheese. Looking at that list it doesn't sound very appetising but it really was! We talk about nice things to do post chemo and all sorts of non-cancer related things, and I leave the restaurant feeling almost normal. I just hope they don't check my alcohol levels in the morning bloods!

Sometimes you need the real expert

The ovary jab turns out to be a drug called Zoladex. I work this out the day before by googling (in breach of all my self imposed rules) "ovary suppressant" and trying to ignore the results of searches that say anything too scary. However the side effects detailed on the reliable sites look scary enough: hot flushes, mood swings, weight gain, vaginal dryness - mini-menopause, in effect. It is the weight gain that bothers me most as, whilst I always like to think that my figure has nothing to do with my self-confidence, I reckon I'm in pretty good shape for my age and history and if I'm honest that's important to me. Given I can't even run 100 yards right now, so exercise is out for another couple of weeks, I feel like I haven't got a chance here.

My Internet research also doesn't show much to support the chemical consultant's position about preserving ovarian function. There are only two pieces of research that mention it in relation to cancer generally. Both are from the US, one is positive and the other negative. Otherwise it is referred to in relation to breast and prostate cancer treatment, where it is used specifically to manage hormone issues. I leave a message for my Macmillan nurse (note for overseas readers: Macmillan is the UK's main cancer support charity and their nurses give practical, informed support of whatever form is needed to cancer patients and their families) to try and talk to her about it but she doesn't call back in time so I have to work this one out on my own. Take the risk that the chemo triggers premature menopause or take the drugs? In the end I opt for going for it. I know the chemical consultant is more up to speed with treatments than I am and whilst the effects will be unpleasant in the short term, long term it may help.

I have an appointment with the GP to have the jab. She wanders off to go and collect it from the surgery's stock and comes back with the nurse and a large-ish syringe. After giving me a telling off for still having my dressing on (to protect the incision site from rubbing - this is apparently not good and I need to take the dressing off now), the nurse talks me and the GP through the procedure. The jab goes into my stomach near my tummy button and into the fat layer. The needle is larger than an ordinary hypodermic and it's a bit painful, but it is over in seconds and both the nurse and the GP are very sympathetic. It turns out that the GP has only administered this jab twice before and the nurse has done it hundreds of times. I'm grateful she left it to the expert.