30. the week after chemo [in bits]

Wednesday 9th to Friday 11th April

The two days after chemo where fine. I actually felt better than I had felt since the surgery, I think it was relief, that it hadn’t been as terrifying as I’d thought it would be. Ate my tablets, as instructed, and only felt vaguely ill first thing in the morning. The third day was revolting, as I felt sick until lunchtime, but didn’t take the ‘emergency’ tablet [this is called stubbornness, aka: stupidity] finally took it and some toast and marmite [Marmite! YES!! LOVE it. Tastes so strong it obliterates the horrible taste that occasionally arrives in your mouth – but more about that in a bit] and felt much better almost immediately. It’s not that you feel like you’re going to be sick, and I think [in my case anyway] ‘nausea’ is a misnomer – it’s more like that feeling you have when you are with an upset stomach. A sort of persistent roiling in your tummy, and it makes you exhausted and a bit white round the gills. Far better to take the tablets! Yes, I know – no brainer...

Had a lot of peculiar pains on the 3rd day too – very difficult to decide if they are from the surgery, the chemo or the menopause. Life is filled with confusion these days. Ignored them.

Friday night I decided I would clean the floor in my office, as I felt as if I was being ruled by my belly. Plus the floor was getting nice and dusty. Hideous! Time to get a little control back here I think! It’s a teeny weeny floor, about 2m x 3m. Nothing radical. Got Aj to bring the vacuum down for me, and used the hand held thingy to slurp up the dust and stuff, so no shoving a machine around, then quartered the floor and cleaned it bit by bit. You have to get on your hands and knees with a rag for this floor, as it’s tile, and needs cleaning properly. Got it all done, felt shattered, but I was really pleased, as I had achieved something. BAD idea...spent the night awake with stabbing pains in my stomach. Apparently the nerves complain rather a lot when they are growing back, and I obviously gave them a reason to ‘Be Serious’. Grr. Next day I had to take a pain killer. Sorted. But irritating, as I now ‘Know My Limits’. Pitiful.

29. 1st chemo session - 1 down | 5 to go!

Tuesday 8th April

Early. Yuck. I do so detest having to be civil first thing in the morning. Appointment was at 8.15. Aj dropped me off [he would have come, so would Mum and ten other people, but I decided to go alone, as sitting around for 8 hours or so is tedious, especially with a grump like me] and I raced into the little shop, grabbed a sandwich, bar of chocolate, a big bottle of water and a bag of sweeties. Some Werthers Mints – never again. They are so sweet I was at risk of diabetes...dumped them in the free sweetie tray for general consumption. Anyway, I was late going in which freaked me out totally – waiting is not my strong suit, and particularly not today.

Eventually got going at about 8.40. had the pre-meds, which take ages, but as the pharmacy are merrily mixing up your chemo in the interim, it’s just as well. First they soaked my hand in hot water to get the veins up, then they throttle your arm with a band, and put in the cannula. Didn’t feel a thing. Marvellous.

I then had Ondansetron, Dexamethasone and Piriton. All of these for anti-nausea and ant-allergen. Having been told some chuckalicious tales about the Piriton tickling your nether regions by Tracey, I was rather expecting some amusement there, but nope! Nada! Everything went in through the cannula, and then they chuck a bag of saline in there to clear the line for the chemo. Piriton made me very dopey, and for the rest of the day I coasted between being sleepy or wide awake. Had the Paclitaxel first, that took 3 hours. Then a bag of saline to clear the tube, then another one of glucose, as the chemo is in glucose [I think that’s what she said], then the Carboplatin. That took about half an hour. Then another two clearings, and out! All told, I was there for about 8 and a half hours.

The Paclitaxel is exhausting, and it made my arm really hurt, near the cannula, and further up the arm. Not screaming pain, but painful enough. The nurse put a fluffy heated blanker around it and that knocked it right back to bearable like a small headache, with occasional sharp stabs of pain [it obviously is an attention seeking drug this one]. She said it’s because it’s so cold it bothers the veins. My veins were NOT amused. I could read my book and ignore it [during an awake bit!]. Also made me feel a bit delirious for a while. But nothing radical.

1 hour in my hand was ok and I gave back my new friend, the fluffy heated thing. Once I sassed out the system, I could unplug myself from the wall and trundle about. Just as well, as I drank more water than a thirsty camel, and was nipping back and forth to the ladies and the water machine for refilling my water bottle every half hour. WHAT a palaver trying to get reorganised clothes-wise with all those wires hanging out of my arm! NOTE TO SELF: must plan better clothes next time. Roll on summer. Oh, and remind veins that this is a team effort and they should kindly not be so disruptive.

In the meantime the lovely ladies from Force were nipping in and out with cups of tea and coffee, biscuits and smiley faces. Managed to trundle out to the waiting area and get a coffee myself too. Rather startled the waiting people I think. Woman And Personal Darlek get A Cuppa. Hmm.

Lunch time the nurse came round with sandwiches – thank goodness I bought one – all they had was egg and tomato. YUCK! What?? Who thought of that for people who are trapped in chairs for 8 hours? Are they mad? I had chicken and stuffing – far more civilised. But at least they offer you something. Better than a poke in the eye. And the coffee is ace.

Aj arrived as the Carbo was due to go in, what a nice thing to see his face! By the way, the chemo comes in huge great bottles instead of bags, and everyone dons a big smock to deliver it. The Carbo was ok for me – feels very cold going in, but apart from that, no problemo. One of the other women had a side effect of a very red face with breathlessness, and had to have oxygen and a lot of attention, but she was ok after a while. Poor thing, she was very stressed. I was very grateful that I didn’t get that. This time.

The place was like Piccadilly Circus today – full to the rafters, and I was amazed at the nurses having such a lot of people to deal with all at once. I don’t think they had much break time, and they were running all day. Ran out of chairs too, and everyone looked a bit frazzled. But everything still done with a kind word and no fobbing off if you needed to know anything.

Hoorah – last glucose wash and: ESCAPE at last – raced into the car with Aj, lighting a ciggie on the way ;o] Felt ok apart from a sort of wobbly leg thing, but I think that was sitting around for so long. They joined the veins in making their disgust felt. We went to the Quay for a quiet glass of wine, and then home. I felt slightly queasy, so took the tablet they command you to take, drank yet more water and sipping a glass of wine as I type this. I am not tired today, don’t feel too bad at all. Still a slightly wobbly tummy, but it might be psychological? Anyway, will see what tomorrow brings, as that’s supposed to be the day it hits you. I have 2 more tablets to take tomorrow for in case of nausea, then a pack of ‘in case’ ones for the days after, and hopefully I won’t need them. Hand still having stabbing pains but I think that's just from the cannula - had it after the surgery too.

If each one goes like today, I shall be eternally grateful. One down, five to go!!

Righto! Back to the wine and water!

28. ha! hair cutting sorted at last

Remembered today [this was on Saturday] that I really need to do something about the hair situation. So I rang Exeter Hair & Beauty, where I normally get my hair cut etc. when I am home. Left a message for Jenny the owner to please call me back. I didn’t fancy talking to anyone else, and Jenny has always struck me as a pretty thoughtful person.

Long and the short of it is [oops – sorry bad pun there] I can book myself in late night this week for getting a short cut, then Jenny, bless her heart, will come round to the house herself to do the dreaded deed of shaving off the rest. How cool is that? Best get my wigs sorted I think, then I can ask her about those too.

Yippee!

27. Last but one of the hurdles...

It never ceases to amaze me how the smallest things can make you totally exhausted. Today I had to do three things. Get my nails done [my treat!], have a wig fitting and go for the pre-chemo assessment and chat. All three seem like innocuous little tasks, but I must say that here I am at days end, completely shattered.

The nails; no problem apart from the fact that they are nowhere near as good as the UV gel I have done in Portugal, they look a million times better. Oh well – as I have discovered that I get a wig free from the NHS, I can afford to splurge on the one thing that I know will look nice [and not fall out! quite useful]. I now have French Polished nails with a sort of UV gel on them. We will see if it last the promised 3 weeks. I also paid in advance for the next three sessions, as they then throw in one for free. Ok. That’ll see me to the end of the chemo – yay, nails will be nice and not breaking and tattered. Loads spent today, but two good things – the manicures are paid in advance, so I shall soon forget the bill. The fact that I have already paid means I HAVE to go out of the house to have it done. Motivation – I think I will probably need it.

Wigs. Well. What can I say? An amusing but also distressing experience. Wigs DO NOT look like the pictures once they are on your head. I tried on one that made me look like Shirley in Boston Legal. She looks great, but is about 60! NO, NO! Long wigs look crap – I think if I had alopecia and this was a long term thing, I would have a fantastic, real hair long wig, but the price range I’m going for, the long ones are not as good as the short. A good idea from the lady at the wig shop - if I have a short wig, once my hair starts growing out it won’t be such a surprise for people to see me with short hair. Very wise. So short it is.

Tried a few. I hated nearly all of them and it all felt utterly surreal, but we managed to winnow it down to two, with another on order for me to try. Took phone pics for review at home. I now need to get a ‘case number’ from the RD&E, so that they can order the wig. Right. Later. Wig arrives next week, will go and try it on once I wake up from the chemo. Then I will buy one, and have the other on the NHS. Sorted! Well, apart from the hair cutting scenario, which I am still trying to resolve. Might go to the hair salon I usually use in the UK. Initially I wanted to avoid that because everyone knows me there, but it may be a better plan. Thinking about it.

Next stop the oncology department of the RD&E. Saw a peculiar video, running over all the chemo info again. Then saw a nurse called Helen, who went into more detail, presented me with a little blue book for recording stuff in, showed us around the oncology ward etc. I think it’s so you know what to expect and to remind you of all the bits that you forgot since the initial meeting.

Seems it will take around 6 or 7 hours, especially as this is the first session. On arrival I will have 3 x pre-meds; anti-sickness, piriton and cimetidine. This all put in one by one through the cannula – while this is all going on, the pharmacy make up the chemo, which takes them about 1½ hours. The Paclitaxel takes about 3 hours, and the Carboplatin, about ½ an hour to an hour. So it’s basically an all day job. Aj will drop me in the morning, armed with Nintendo, books and whatnot, then collect me afterwards.

We made a quick visit to the Force centre as well, as that’s where you can go for lots of support, info and advice. It’s a gorgeous little building, all light and airy, with a pretty garden and smashing people. Really friendly. We’ve decided to meet there in case one of us is early or late, as it’s very calming. More about that later.

26. a surreal day dealing with hair salons...

Wednesday April 02

What an aggravating day. I was very tempted to commit GBH on a few occasions. And if one more person calls me about a driveway / mobile phone upgrade / bank account, my head will explode.

But that’s not the reason I was tempted to violence [surprisingly!]. I decided that today I would A: cut my hair very short, B: arrange to have the rest shaved off at home once it starts falling out in clumps [well, hopefully it won’t do quite that, but you never know]. I had to see the nurse at the GP’s today, as the bottom of the wound hasn’t healed the same way the rest has, so I thought I had better get it checked. Right as rain, so that was step one sorted. The nurse was lovely – she had a problem with hair as well, and highly recommended the ladies at the wig salon in Dingles in Exeter, as she has seen them herself. That was encouraging, as I am going there after work Friday, and as she was so positive about them, I called make an appointment.

But I am getting ahead of myself – I forgot the interesting and infuriating interlude in between. I thought that as we have a hair salon 2 minutes walk up the road, I’d nip in there on the way home from the GP and see if I could have the A and B sorted. Seemed quite simple to me – cut my hair short now in the salon. In a few weeks, one of the girls might be able to walk down to our house, and razor the remains of my hair. A good idea from Aj, as it would be a lot less stressful to have this done at home, rather than in a salon. Nope! It would have been ‘too much trouble’ as ‘everyone is off on their holidays’ and ‘we need 2 people in the shop at all times’ etc – ‘sorry’...very thoughtful girls. As there are loads of women suffering with alopecia and chemo induced hair loss, I found that very un-empathic and was pretty cross. So, obviously they don’t need the business. As a rather bitchy little manoeuvre and to vent some anger, I nipped onto the internet and gave them a bad review – not unkind or rude, but not recommending them either. Right, that was them crossed off the list.

You will note that I refer to ‘empathy’ here, as averse to ‘sympathy’ – I don’t need or want sympathy, but a little understanding makes a huge, huge difference when you are asking questions like that - it’s hard just to discuss the fact you are going to lose all your hair with a stranger, and the girls in there seemed to think I was asking about having the latest ‘Posh’ style – surreal.

Got home and decided to call the wig ladies at Dingles. AAARGH! The internet shows a number, which I duly called – apparently the hair ‘dressing’ side of it has moved. Ok. Call the new number. Deal with a total half wit who should never ever even be allowed NEAR a phone. Ever. Nor a pair of scissors if the phone conversation was anything to go by. I managed to discover, after much difficult two syllable style conversation, that the wig department is STILL at Dingles, but this new number is a hair salon [I am starting to wonder WHO works in hair salons – where do these people come from? the moon?]. And no, she didn’t know anything about wigs, chemo patients etc. Ok. More phone calls – thankfully, Dingles have a person on their exchange who has not yet undergone a frontal lobotomy, so I was put through at last to the right place.

What a relief!! I spoke to a sensible and empathic person at last. She sounded just up my street, understood my mind set, knew exactly what I wanted, how to get it and what I should be doing. Lovely. AND, interesting factoid from this woman, I actually am entitled to a free wig from the NHS, and apparently I can order it through the Dingles wig shop [I will no doubt find out all the names of everyone, and of the shop eventually]. They will call the RD&E on my behalf while I am there and get a case number, and order it for me. Oh yay. Such a relief. But after screwing myself up so much to go to the initial local hair ‘salon’ [grr] and to be so disappointed by them, I was now shattered. But, excellent that I now only have to lay out for one of the 2 wigs. Cool.

Deep breaths.

Now to organise a treat for myself, after all this torture – Mum has been advised by her friends that one’s finger nails get really brittle from the chemo. I am lucky and have very strong, long nails anyway, but I decided I’d have a full set of UV gel nails done – it’s a really hard coating over your own nails, set with UV light. It can incorporate a French Polish, and lasts for ages if it’s done properly. So I rang up about that, expecting more chaos. Incredible – a young girl answered the phone, arranged the appointment, knew quite what I wanted and that was that. Sorted. Hoorah!!

It is very tiring and trying, dealing with people who don’t understand or try to understand what you are going through – and even though it isn’t their fault, it can be very upsetting at the time [yes, I am over wanting to fire bomb the local salon by now heh heh]. You have to be prepared for the fact that even though all your hair falling out is central to your life, it’s peripheral to everyone else’s. And long may it remain so.