In three days, I will have my last FEC chemotherapy. It’s my birthday tomorrow and I’ve asked for flowers to cheer me up during the period following chemo of nausea and glum. (The other request is for fruit and tomatoes to dry in my new food dehydrator).

The oncologist

Three weeks ago, I’d been given overlapping appointments – chemo and with the oncologist to hear about radiotherapy. After a bit of confusion that morning with calls, we went to the Parapet, the breast cancer diagnostic centre I went to originally, to see the oncologist.

We saw the same doctor we’d seen after my surgery. There was a lot of information which I tried to write down even though he said it’s all be in the booklet they’re give me. As usual, some things came up in discussion that wasn’t in the booklet and some things are in the booklet that weren’t mentioned in person.

I will start radiotherapy in Reading hospital in September. That leaves August treatment-free, except for the side-effects of my last chemo. I will have 18 sessions on consecutive weekdays. I knew from reading another blog that each session is 15 minutes of alignment and just 2 minutes of the radiotherapy, which is (like?) a high-energy x-ray.

First I will have a planning appointment so that the machine can be specifically aligned to my body and the area needed to minimise the exposure of my heart, lungs and bones to radiation. I will get three small tattoos on my breast (chest?) that will be used in the alignment process. I was told to get a fitted bra – which I will get refunded – as this will hold me in place but be cut by the radiotherapists and, I guess, what I will wear during the sessions.

I didn’t write it down but I think he also said that I will start hormone therapy about the same time (as my tumour was sensitive to oestrogen and progesterone).

Side-effects

There are short- and long-term side-effects to radiotherapy. I knew about the obvious sun-burn effect and possible blistering. I was advised to use a non-perfumed aqueous cream twice daily. I must avoid anything that will further irritate my skin on that side, such as deodorants or perfume, and I mustn’t shave my underarm. I should wear natural fibres and a soft bra to avoid chafing. It all makes sense.

The long-term side-effects can include skin changes such as darkening, thickening or a shrinkage.

There are also some very serious long-term side-effects due to the heart, lungs, nerves and bone being within the radiotherapy zone – explained by the oncologist and in the booklet. They are rare (1% of patients) and there’s nothing I can do to prevent them. I shall therefore not blog about them or try to think about them.

Chemotherapy #5

The previous chemotherapy went okay. I took my camera so that Frank could take photos of the dressing procedure from start to finish. The hand dressing and implements seem very sophisticated. I have added the photos as a set on Flickr.

As usual, we spent most of the time either chatting with the nurses or the other ladies having chemo.

One lady was having her first chemo. After the pharmacist left her the big bag of medications, I gave her some advice about the extra anti-sickness pills. I’d switched from Domperidone (to take before eating) to Prochlorperazine which is a buccal type; you put it under your lip against your gum so that it slowly dissolves and does its stuff. It works within minutes but, as it dissolves, it tastes foul and so I chew some gum at the same time.

The lady in front of me had nice sandals which I commented on. She told me that she had inoperable cancer – against her chest wall – and had been having chemotherapy since October EVERY WEEK in order to shrink her tumours. I asked her whether she felt that her life was in limbo and she said she did. She seemed to be taking it in her stride. How awful.

Dealing with chemotherapy

The nausea and glum feelings lasted longer after my last chemotherapy – about 10 days – but neither was more severe.

I set an alarm the first few days to remind me to eat regularly to pre-empt hunger-mutated-as-nausea. I have cut out lactose completely but sometimes get slightly nauseous after eating – it might be sugar or butter, I’m not sure. Or perhaps it’s inevitable. It’s not bad enough for me to experiment to find out.

I get tired in the afternoon and evening and sometimes take naps if I feel I just can’t stay awake.

I have blood – fresh and dried – under my big toe nails. The oncologist and GP that I was advised to see were both bemused about it. Nail problems are usually a side-effect of the strong chemotherapy drug, Taxotere. I just have to keep an eye on the bleeding toe to make sure it heals quickly and doesn’t get infected.

My hair started growing back several weeks ago. It’s about a centimetre long, mostly white, very thin and soft. There are about a dozen long hairs remaining that have survived chemotherapy.

The loss of my hair turned out to be less of a deal than I expected, and I hadn’t expected to worry about it much anyway.

It’s been nice and cool in the hot weather and I have had lots of nice scarves and hats to wear when I go out. I donated my black wig to Cancer Research UK and the two black felted hats that Becky kindly made for me to The Parapet. I will keep and continue to wear the purple and green hats she made for me.

Plans for the week

It’s my birthday tomorrow. I will be hosting this month’s cake club with my friends who were my neighbours at my previous house in the next village. We take turns hosting a tea and cake afternoon. I will be baking two milk-free cakes I’ve not made before: a chiffon cake and a génoise.

I will also have my pre-chemo blood-test tomorrow, Monday, as my last chemotherapy is on Wednesday.

I will make jewellery to give to the four chemo suite nurses on Wednesday, and for the (up to) seven people who will have be having chemotherapy at the same time.

It’ll be the first time I’ll give thank-you gifts to medical staff in person. And it’s because there will be a fuss made over them that I wanted the onlookers also to get a surprise and receive little gifts too, hopefully to brighten their day.

I figure that I will have about 10 days of annoying chemo side-effects but this time knowing that it’ll be the last time I go through them. I have lots of things to do to distract me during those days.

After Wednesday I’ll post photos of the jewellery and, hopefully, of some of the people.

See you on the other side!

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It started with a birthday

It was my birthday on Monday. I went for my blood test in the morning, had tea and cake with good friends who were neighbours where I used to live, and made jewellery in the afternoon.

We moved here, just a couple of miles from where we rented before, so that I could stay nearby the new friends I made. (I’d found the lump two days before we moved.)

Once or twice a month we host an afternoon of tea, cakes and chat. Some of us use the opportunity to try new recipes. This weeks cake club coincided with my birthday – I tried two milk-free cakes – an orange chiffon cake and a génoise.

I already had a 1950s coffee set (pot, cups, milk jug and sugar bowl) from my late mother-in-law’s house. I also had exquisite vintage hand-embroidered linen napkins that I’d bought a couple of years ago but hadn’t used yet. Last week I looked for vintage cake stands, matching side plates, a cake slice and cake forks. The cake slice arrived late – today – and I didn’t manage to find vintage forks in time.

Present highlights

As my birthday was two days before my last chemotherapy I asked the cake club ladies and my Facebook contacts to give me flowers to cheer me up after chemo and/or fruit and veg to use in my food dehydrator.

Here are some of the birthday presents I received. I love that Yvonne remembered I’d mentioned I’d never had a teddy bear growing up. My new teddy now sits on my pillow during the day.

Teddy from Yvonne

Oregano from Rosie

Basil from Aenne

Roses from Matthew

Thank you for all my presents!

Chemotherapy #6

The appointment of my last chemotherapy started – frustratingly boringly – with an 80-minute wait.

Even though we had a review with the oncologist yesterday, we saw another oncologist first. I’d made a note of the last set of side-effects and was told to prod my breast care nurse if I hadn’t heard about a radiotherapy appointment by the middle of September.

I’d told yesterday’s doctor that I had been taking the buccal anti-sickness pills on demand and he recommended I switch back to Domperidone and take them regularly every day for the first week; he explained that this would ensure a continuous level of the medication in my blood stream. I’d been given five weeks worth a couple of months ago by today’s doctor but I hadn’t been taking them. I feel foolish that I could have maybe been able to eliminate my nausea all this time but it wasn’t until yesterday that it was explained properly. Ho hum.

I started feeling nauseous yesterday – I didn’t eat until 4pm – and, while in the waiting room this morning, I started to feel sick again, another morning when I didn’t want to eat. I mentioned it to my chemo nurse, Anita, and she said that they have a pill for it – to help people ‘chill out’ – if I’d mentioned it.

Thank-you gifts

To say thank you to the various people who have looked after me during my treatment, I have been giving people jewellery I make.

There are four different chemo nurses at the Eden Unit in Windsor Hospital and I have now had all of them tend to me for my chemo drugs. There are three present at one time, plus an assistant.

I made Anita and Lesley freshwater pearl necklaces in a design that has always been popular, but in new colour combinations. I wasn’t sure how the pink and yellowy-green combination would look but I think it’s the best of the jewellery I made.

About an hour into my session, when Anita, the unit sister, came to check my drips, I gave her the two boxes (as Lesley was out of the room) and thanked her. I said that she and Lesley could decide between them who would get which colour. When she opened the box, I swear it took her breath away. I was chuffed! I later saw Lesley opening the boxes and she looked pleased too.

I then called Asif over; he was the first nurse to give me chemo and when I took photos at #5.

I had made him and the other male nurse turquoise and silver cuff-links. I also made two pairs of hematite and silver cuff-links. I gave Asif a pair of each.

I had decided to make and give jewellery to everyone who happened to be having chemotherapy at the same time, so that everyone could feel special for a little while.

There are areas for five patients at any one time but, depending what time I arrive, one or two could be replaced by new people. I made enough for seven women and two men. There was only one man having chemotherapy (his first session), which is how Asif got the second pair of cuff-links.

Being constrained by my drip-stand, Frank went around the room, first to women I’d seen before, to ask them to choose their necklaces. Frank said that two people offered to pay for them!

There were two left and so I gave one to the pharmacist (who said I’d made her day!) and to Gillian, a nurse with a striking black bob hair-cut, who’d sat in on two meetings with the oncologist and who’d always seemed friendly. I had to leave the box, with a note for Gillian, with the receptionist.

I didn’t want to make this a sales pitch for my jewellery shop and so, rather than use my proper shop cards with my name and shop details, I hand-made cards with my name and photo of me in my blue wig on one side, and my regular photo and general web site address on the back.

It felt weird when it was time to stand up and leave the chemo unit. I said my goodbyes, thanked the staff again and left.

Okay, I need to take a nap now. Talk to ya later.

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Black and white

A recent message from a business acquaintance included the sentence “it is good to hear that your treatment is progressing and hopefully you will soon be in remission.” A couple of days ago my mother – who is generously helping us – used the words “given what are you are going through”.

To be honest, I no longer remember what I thought about cancer before my own experience with it this year. Maybe people with no experience of it think that the only options are Never Had Cancer vs Will Eventually Die of Cancer.

I forgot that my mother doesn’t have access to this journal. I wonder what it is that people imagine that I Am Going Through. Maybe they imagine me pacing the rooms in tears, worrying about dying.

I am happy to report that, except for the annoyance and interruptions of treatments and their side-effects, I am fine. I don’t think I have cancer; it might sound like denial, but even my surgeon said it after hearing the results of clear lymph nodes after my lumpectomy.

Other than being at a higher risk of developing cancer than average, I don’t think of myself as being ill or anything being wrong with me.

Whereas 2008 was the year I lost loads of weight, 2010 will become the year that I had a small brush with cancer.

August

For the first time since January this year, August was a month without any hospital visits.

However, I still had treatments.

I had my last FEC chemotherapy on 28 July. I took the extra anti-sickness pills – Domperidone – regularly for a week and the nausea was tolerable. I don’t know why I stopped after a week as the nausea lasted three more days.

My remaining chemotherapy side-effects are:

• inflamed and sore vein in arm
• lines in nails

In the fourth week after chemotherapy – the last week of August – I started being nauseous again.

I wondered if it was because that would have been when I was due to feel sick if I’d had more chemo!

Hormones

I started taking Tamoxifen at the end of week four. It is hormone therapy to remove oestrogen from my body since the cancer I had grew faster in the presence of oestrogen.

I started to feel a different kind of nausea after eating (less the travel sickness kind and more the eaten-something-bad kind) and fatigue again. I’ll be taking Tamoxifen for five years. There are short-term and long-term side-effects.

At the start of the same week, I started having hot flushes during the day. I’d been having them at night for the last two years and already knew that I was pre-menopausal. It’s just ramped up a bit.

Daytime hot flushes are very weird.

It’s like feeling really hot from a fever but without feeling ill. It’s only when I can feel the sweat cooling on my forehead that I realise what’s happening.

I’ve taken to wearing layers which I can remove quickly. I have a hand fan by my seat in the lounge. I won’t be able to take HRT because it adds back oestrogen.

On losing my hair

I’m actually glad that I didn’t go for the cold cap to try to prevent hair loss because losing my hair has been a bit of an adventure: friends have made or bought hats for me and I’ve had fun with my blue wig.

It was great to go bare-headed indoors when it was really hot.

The rest of my hair has also changed. There’s much less of it. What’s left is finer and fairer. My eyelashes are short and my eyebrows are not as bushy.

Ever since my teens, I’ve battled with excess hair and so this respite has been welcome. In fact, at the time I found the lump in my breast, I was taking a high-oestrogen version of the Pill to make the hair on my face less dark and less thick.

I wish I could choose which hair I could get back and which to stay away! I miss my long eyelashes and head hair.

And, in the end, whether I wore a scarf, hat or wig, I always got looks, just different kinds of looks.

I’ll be keeping my blue wig and gorgeous hats to wear again.

Weighty issues

I gained 17lbs (7.7kg) this year. Although I have been putting on weight since I stopped calorie counting last year, I only gained 7lbs last year.

My Weight Chart:

Most of the clothes I bought last year after losing weight are too small for me now. I bought two pairs of larger trousers and blouses from eBay. It was ghastly realising just how big I was in 270 degrees of mirrors in the changing rooms on Friday.

Here are some key dates, if you’d like to try to match them to the graph:

• 26-ish Jan – I found a lump
• 10 Feb – screenings (“lump looks suspicious”)
• 17 Feb – cancer diagnosis
• 8 Mar – surgery
• 24 Mar – results (knowingly cancer-free)
• 30 Mar – Oncologist about survival & chemotherapy
• 14 Apr – chemotherapy #1
• 4 May – chemotherapy #2
• 26 May – chemotherapy #3
• 16 Jun – chemotherapy #4
• 6 July – chemotherapy #5
• 26 Jul – my birthday
• 28 Jul – chemotherapy #6

As usual, I feel as if someone else has done this to me, whereas I’m really responsible.

I remember blogging here about a couple of binges before big events, such as the before the screening results and first chemotherapy.

In the first week after each chemotherapy, my appetite was completely messed up. I never felt hungry. Instead I felt sick when it was time to eat. I didn’t feel like eating at all and so I bought treats and yummies such as crisps (potato chips) and bread rolls.

Now that I am feeling a bit queasy again for different reasons, it’s an effort not to resort to the previous trick of a slice of bread to get rid of it. I have also got into bad habits and have returned to old habits of “I deserve it”, “Just one more”, “I’ll start my diet tomorrow”.

I’ve managed to halt the weight gain in the last week. I know that I’ll only be able to lose a significant amount of weight if I start food diarying again. But I cannot bear the thought of weighing everything I eat to work out and then document the calories.

It occurred to me to refer back to my 2008 online food diary and replay the food I ate in the weeks where I lost weight. We’ll see.

Radiotherapy

I have my Radiotherapy Planning Meeting tomorrow at Reading Hospital.

I will be lined up to the machine and will probably get my lining-up tattoos.

Radiotherapy is a high dose of x-rays. The radiographers have to spend time lining me up with the machine and marking my position at the start so that the rays reach all of the required areas whilst minimising exposure to vulnerable areas such as my heart and lungs.

Because I am big-chested, I was advised to go to the John Lewis in Reading to get a fitted bra to wear during radiotherapy and for which I would be refunded. I was told that the radiographers might cut bits away of the bra.

We went to the shop on Friday and I had my first ever bra fitting.

It turns out that I had been buying bras with too large (+5″) a band size, which explains why my bras always rode up at the back. Because I’ve put on a load of weight, I also got an everyday cotton bra to wear for the next month or so. I went hatless in the changing room as it got quite warm.

The lingerie staff member was so helpful and patient that I said to Frank as we left that I wished I could tip her. When I had thanked her, she said “that’s what we’re here for”. I realised that all the other people I’d given jewellery thank-you’s to could have said the same thing, that they were just doing their job. Since getting help buying two new bras is part of my treatment experience, I might drop some earrings with a card over for them tomorrow.

I’ll be blogging next about radiotherapy.

I’ve just finished my first week (5 of 18 sessions) of radiotherapy at Reading hospital. I have no ill-effects to speak of.

I’m due to have two more weeks of weekday sessions plus three days of boosters for my surgery scar.

Planning meeting

I went in for an initial planning meeting last Monday.

Radiotherapy is a very high dose of x-rays; one has to make sure that the right bits get exposed while minimise exposure to other bits, such as – in my case, having had breast cancer – heart and lungs.

To do this, they have a specialist table-bed-board thing and a detailed procedure to record positional settings during a planning session. These settings are then applied at each radiotherapy treatment.

Firstly, I was called in for a talk with a nurse to go through what to expect. The nurse (H) had a great sense of humour. Frank and I encouraged her and we quipped our own jokes. At one point, H passed over a consent form on which, amongst other things, various side-effect checkboxes had been ticked. I asked “oi, does this mean I can choose my own side-effects? What if I want another set?”

Oh how we laughed. And, apparently, the tattoo ink colours are black, black or, umm, black. H said that, surprisingly, most people went for black. (Frank suggested blue; I’d have liked green.)

LA1

I was asked to change – that meant removing my top clothes and putting on a green robe which tied around the middle. I was then escorted into a room with a linear accelerator (LA1 in this case) and asked to lie on the table-bed thing.

It is a horizontal panel with an elevated head section. There is a blue wedge about half way and I rest my bent legs on a semi-hard red form. The head board has lots of peg holes into which arm rests, and one of three head rests, are placed depending on the person. The table can be raised and lowered or rotated.

Two sources of green lasers produced horizontal and vertical green lines across my body. I could see them in the reflection of the machine and mentioned that I looked like something from Tron, realising immediately that the young woman was too young to know the film.

The two radiographers made some marks on me in pen and read out numbers to each other, shifting me a little, while adjusting the table and machine. They then called in a doctor who was followed by a young student doctor who had I-don’t-wanna-be-here body language.

The main male doctor introduced himself. I said hello but felt a bit weird being seen by someone for the first time when naked from the waist up and not being able to turn my head to make eye contact. He inspected the marks and made one of his own.

I then got my tattoo marks – just pin-prick size – and they felt exactly like I expected, like quick pin pricks! I got one on my right side, one on my chest (by three freckles – the group looks like a constellation now!) and two, I think, on the left, where I had the lumpectomy.

Before I left – and after I got dressed – I was given a sheet with my appointment times for the next four weeks. The first session would be the following Monday.

Week 1

Frank came with me to the planning meeting and my first radiotherapy session. I’ve travelled by public transport for the rest.

Waiting for my first dose

Entertained by Frank and fishes

The waiting room seen through one of the changing rooms

My actual radiotherapy is on a different machine (LA3) by a different (nicer) waiting area.

The first session took longer so that the radiographers could perform extra diligence. They looked at the green lines and tattoos on my body, read out my setting numbers and adjusted the table, me and the machine.

If I am ever a millimetre or so out of alignment from what my set-up documentation specifies, they will gently push my flesh (as if it would stay) as if I was made of clay. Very interesting! I’ve been told twice not to “try to help” by moving and so I have learnt to just lie still and let them get on with it.

For this first time only, they attached one or two diodes to record the actual dosage level.

LA3

Once they are satisfied with the set-up, each radiographer reads out my name and the settings from their console. They then excuse themselves, hit a big button on the way out and then I wait.

A big light on the wall, which is initially off, clicks on yellow for a few seconds. It then turns red at the same time that a buzzing alarm sound starts with accompanying clicks.

The first dose was about 10-20 seconds. There is no sensation whatsoever.

The radiographers return to reposition the table and the machine arm for the second dose administered from above; the machine is rotated to just by my head to the right. I am left alone again and wait for the red buzzing clicking.

A single radiographer then returns to lower the table so that I can get off. I return to the changing rooms to get dressed and leave. I am usually in and out in 15 minutes.

The arm of LA3 has a great smiley face on it. It’s where the alignment lights come from.

Chatting to people

The waiting room seats about 15 people. A couple of times this week, I’ve stayed for half an hour after my session to talk with people. I’ve heard a couple of horror stories in the last two weeks. One was about a near-fatal mistake involving anaesthetic and another about being fobbed off by a GP for a year before being diagnosed with cervical cancer.

I love talking to people to hear their stories but it is very worrying to hear of such serious mistakes when I have chosen not to worry but to put my faith in the system.

That said, I still think that I have been very lucky and, each time I hear these kinds of stories, I am glad that I’m not the one telling them.

Reading hospital

I don’t like Reading hospital. There is a something about it which is oppressive. The staff are wonderful and so I think that the building is the problem. It seems to be a maze of yellowed corridors and areas of bleak darkness. It feels like the walls are coming in to engulf me.

I was grateful when I found out that my radiotherapy was in a different area to where I had my planning meeting. The waiting room by LA3 is brighter and less cluttered.

My hair

The hair on my head is returning steadily.

It’s still very soft and more black is coming through (although there is still more white). People had said that, after chemotherapy, hair could grow back frizzy or different colours but mine seems to be coming back the same as it was before.

My eyebrows are returning with a vengeance.

At the end of the world the only that will be crawling over the world will be cockroaches and my eyebrows, the latter as writhing monsters as if from an old Star Trek episode.

What I am afraid of

I haven’t talked here at all about being scared or afraid but there is one thing that has crossed my mind a couple of times: how I will feel if I am diagnosed with cancer again.

I feel lucky with how things have gone since I found the lump in January, that I have got away with it. But with that thought comes the highly irrational thought that, if the cancer were to return, it’d be much worse.

There’s no logical reason for secondaries or a new cancer being worse; it’s not as if there is a Cancer Balance, that because I was lucky this time that I’ll be unlucky the next time. If I am vigilant and can spot problems early, I could still only get an early stage tumour again.

If there is a next time, there will be a difference in that I will know what to expect.

There is a lot to be said for blissful ignorance when it comes to medical treatment. I’ve only been interested in the next appointment and I haven’t looked beyond.

However, I no longer balk at the thought of more chemotherapy. Whereas, after my second chemotherapy, I thought that I didn’t want to have any more, I now think I could stand to go through it all again.

The other thing I am afraid of is a sudden bolt of realisation of what has happened to me this year, that I finally break down and cry. I haven’t cried this year or had any kind of upset or life-changing episode since finding the lump. I hope it’s not all bubbling away somewhere inside.

After radiotherapy

I visited the Macmillan booth near the entrance of the cancer centre at the hospital today, where the radiotherapy departments are. I spoke to the two volunteers (I’d gone to ask about travel insurance options) and they gave me some leaflets and booklets after a great chat.

I read the general radiotherapy booklet on the train home. There was a paragraph on how radiotherapy marks the end of treatment and that people sometimes need more support then.

I hadn’t thought about feeling alone and uneasy after trips to the hospital had finished, but I can easily see it happening; for the last eight months, my focus has been on my treatment. After radiotherapy, it’ll just be hormone therapy and the occasional screening.

Future thank-you gifts

I have had four different radiographers this week (they work in pairs). I started thinking today about what kind of jewellery I’d make them for their thank-you gifts. Oh, and something for the very fun H we met last week.

I look forward to getting to know them all a little better – I can only grab 30 secs chat time with them before they start their set-up number-calling routine – so that I can make something special for each one.

I also need to find out when I will last see the oncologist for the last time until my next check-up (in months or years?) so that I can give him something.

And, last but not least, I will be making something lovely for the five Breast Care Nurses at Windsor hospital.

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I have just returned from a double-appointment at Reading Hospital. My last three treatments next week will be directed towards my surgery scar. In the second appointment this afternoon, a doctor measured the scar and made a lot of marks on me which a nurse then traced.

On the way back to the waiting room area to change out of the hospital’s green gown, I spotted a lady and her husband I met during chemotherapy. I hadn’t seen them for a couple of months; I sat down so that we could catch up.

After an hour, I was still there, nattering away with this couple, still in my green gown, just steps away from the changing booth.

One of the radiographers walked over to me; she had a long face.

I smiled, knowing what this was about asked, “are you here to ask why I am still here?”

She nodded.

I said, “I’m chatting” and grinned again.

She explained that she’d seen me still sitting there and was worried I hadn’t had my treatment yet. She had gone to give the other radiographers a bollocking (my word, not hers) for keeping me waiting. When she heard that I’d been treated three hours ago, someone suggested that maybe I didn’t know I could leave yet. Hehe.

I knew that this is what she was coming over for as it’s the third time it’s happened, that is, a nurse has check I’ve been seen after I’ve stayed after my appointment to continue to chat with people.

Making the most of it

I’ve been thinking a lot about how I’ll feel after radiotherapy, prompted by the Macmillan booklet which mentioned that some people feel abandoned when others would expect relief at the end of treatment.

I realised that, for the last eight months, I’ve had people look after me, be kind to me. I’ve had places to go and appointments to keep. My friends and family have been thinking about me or attending to me.

I’ve had scores of people to chat to in waiting rooms, sometimes grateful that appointments are running behind, as it is just more time to share stories.

I realised today that I will miss it.

I will miss all the caring attention from nurses and the purposefulness of treatment once radiotherapy is over.

I think that I hang about so long this afternoon, chatting, so that I could squeeze the last drop of positive experience out of it.

Next milestone

Physical treatment (not counting daily hormone therapy pills) will be over but I will  be entering a new phase of change and the unknown.

We had very little project work this year and so we’re returning to contract work. Frank started a contract on Monday and I’ll be looking to start a contract from 18 October, 10 days after my last radiotherapy, when the tiredness should ease off (or for a part-time week from 11 October).

This means a whole new set of things to think about, such as commuting, working in an office again and people – meeting new people – great!

Even though having to go back into contracting marks a very difficult year financially, I am very glad that it’ll give me something else to think about. We always knew we could go back to contracting; other people aren’t so fortunate.

Tomorrow I’m having lunch with another lady I met during chemotherapy. We swapped numbers when waiting for our pre-chemo blood tests. I haven’t seen her since then. She’s only finished chemo next month and will start radiotherapy in November.

P.S.

I found something out today that seems to be yet another positive aspect to my cancer experience.

I spent about half an hour talking to someone in another waiting room this afternoon (the husband of a woman who was having her first planning appointment).

Her tumour was about half a centimetre larger than mine but she has chemotherapy BEFORE surgery in order to shrink the tumour.

He said they were told that, because she was quite small-chested, that it would have been difficult to perform a lumpectomy as they’d have to take too much away, relatively speaking. If that is true, it means that my big-chestedness – the years of embarrassment, always avoiding communal changing rooms – actually contributed to less aggressive treatment. Yay.

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Catching up on my RSS feeds yesterday evening, I noticed an unusual flurry of posts from the blog Ramblings of a Bad Fairy.

The Bad Fairy (BF) started her blog in March this year. She had been diagnosed in June 2009 with secondary breast cancer in her liver. That was when she first found out that she had breast cancer. There were also possible tumours on her lungs. She was 40.

She was immediately put on quite intensive treatment, including weekly chemotherapy to reduce her tumours.

She wrote about the positives of hair loss, soon followed by how she was lucky to have the opportunity to look at her life and appreciate all the good things in it. And then she described how she and her husband told their children, taking them to the hospital to meet the nurses and see where she would get treated, so that they would know where she was when she was away.

And then her writing became very special, such as when she lost her bubble:

All I want is …

…my bubble back!

It’s gone. Don’t know where but I wish it would come back. Maybe it hasn’t gone completely and is just deflated and sulking under the sofa or something. But I want it back please.

It’s a very useful bubble. Some days it’s a bouncy hopper type bubble and we just bound through life together. Other days it becomes lots of little bubbles that fizz around and keep me laughing. Occasionally my bubble acts as a cushion and takes the edge of the not so nice stuff that happens.

The one I like the most is the gentle bubble bit. Not over the top and not always noticeable to others, the little bubbly bits that are me and are just accepted as me. The ones that help me chatter cheerfully, that make me chuckle about silly things. The bubble that stops me sitting in a corner with a blanket over my head wishing this merry-go-round would stop and I could get off.

So if you see a stray bubble with my name on, please return it. In the mean time I’ve added a bubble to my wish list in the hope that someone might have a new one for me ….. failing that a puncture repair kit would do just in case it is sulking under the sofa after a run in with the resident house cat!

It was very telling how serious things were when she blogged that her breast cancer was rarely mentioned, that the focus of concern was her liver.

And then her posts changed and were less about her treatment.

1 April 2010

Aren’t rainbows the most beautiful, awesome natural creations? I still see them through the eyes of a child and feel all tingly and amazed whenever I spy one. I’ve no idea if my reaction is because of their magnificent yet simple colours, a fascination with the power of nature or a wish to hold on to innocent childhood fantasies of Leprechauns leaving crocks of gold at their ends! Whatever it might be, I stop and stare with wonder at them all. Luckily for me we seem to have picked an ideal rainbow spotting area in which to live. Since moving here I’ve seen more rainbows than ever, included double rainbows, something I’d never witnessed before and I never get bored of gazing at them.

So, rainbows … I know a secret. Leprechauns were only ever taking cheeky advantage of something created by fairy magic (ok … and a bit of science and nature!). Bad Fairies have a special affinity to rainbows. Many moons ago Bad Fairies were punished for minor infringements of fairy rules with a fairy ASBO. This resulted in pots of paints and brushes being issued and the instruction to repaint any fading rainbow seen. Now being Bad Fairies following explicit instructions can be very trying and does go against the grain somewhat. So they improvised. Splash the colours by all means but ladders and scaffold (elf n safety at it’s best!)? No chance! The best way to paint a rainbow is to scramble up one in the most ungainly way possible, attach a sodden paintbrush to a belt around your waist and slide down yelling “Wheeeeeeeeeeeeeeeeee” at the top of your voice! Hey Presto, great fun and leaves a rather haphazard stripe of colour in your wake ….job done!

When my time comes and I’m not here to ramble, I shall be sliding down rainbows. No star in the night sky for me, nor cold stone in the ground. Rainbow sliding’s where I’ll be! Bad fairies are good at hiding, but one day if you keep looking you might catch a glimpse of a paint covered, scruffy little fairy out of the corner of your eye, riding the rainbows with a massive grin on her face!

She asked how to label her new free-flowing tears of gratitude:

I’ve always cried, it’s not a new thing. Films, books, songs have all been known to set me off. The sort of crying that involves a few tears meandering slowly and discreetly down a cheek.

But something has changed. My emotions are more free-flowing and more open than ever before. I haven’t got time to waste bottling things up so I’m less guarded, I can’t think of a better way to describe it.

These tears are a whole new experience. They’re not tears for me or indeed anyone else, they’re not tears of sadness, frustration or even anger. They’re tears brought about by the kindness and thoughtfulness of others towards me, including strangers. That sounds awful doesn’t it? You’d think no one had ever been kind to me before! They have, but I’ve never been so touched emotionally by it, or at least not to the extent that I bawl my eyes out and turn myself into a soggy faced, unable to talk, crumpled heap for five minutes at a time! As you can see it passes quickly but it is unbelievably intense whilst it lasts and usually happens totally out of the blue.

She wrote about how her thoughts seemed overloaded:

Sunday, 6 June 2010

Hard hats and …

…steel toecaps required!

AAAAAAARRRRRRRRRRRRRGGGGGGGGGGGGGHHHHH. Hmm, that feels a bit better.

Someone has upended the special storage boxes in my head. The ones that I file things away in until I’m ready to deal with them. I’ve gone back over the past few weeks and can’t recall doing any spectacular gymnastics or other twizzly stuff that might have inadvertently scattered their contents everywhere, so why have they all got muddled up?

It’s very frustrating. The boxes were doing a really good job of keeping my thoughts and feelings in their place and now I’ve got to start again putting it all away. Maybe I’ve overloaded some of them and they just burst? Actually, if I’m honest, I’ve probably got lazy and just been cramming things in, sitting on the lids in the hope that they’d hold together.

Now there’s no other option than to start the big clean up …. in reinforced boxes!

The Anger Box – anger at this stupid disease.

The Guilt Box – feelings of guilt because of how it affects everyone around me.

The Sadness Box – sadness at the shadows cancer casts over so many lives.

The Frustration Box – frustration with everything …when the mood takes me.

The Scared Box – this new life is scary.

On a brighter note, when the above boxes are sorted then I can indulge in dipping into the happier boxes. The memory box, the laughter box, the Mr Bad Fairy box, the Junior Bad Fairy box, the embarrassing moment box, the friends box and the giggle ‘til you cry box.

Wish me luck!

From the weekly chemotherapy, she’d lost her hair, nails and was losing her teeth. In August, she found what was called a “tumour deposit” on her skin.

At the end of August, she had to go into hospital to have a drain in her abdomen fitted. Her description of what it was like to stay overnight on an oncology ward has stayed with me ever since:

My newly found dislike of hospital is nothing to do with the staff or the care they give, it’s simply down to the other patients. That sounds really callous doesn’t it? They can’t help being there either. But let me tell you, it was awful.

It’s a six bed, single sex oncology ward. One woman did nothing but whinge in one of those pathetic helpless little girlie voices, “I’m neutropenic, who made this sandwich, I have to be careful you know”, and in the next breath whinging that her takeaway Indian meal she’d had brought in was leaking sauce all over the floor. (It went on!). Another lady lay in her bed, I suspect close to the end of her life. Whether she was aware of much going on around her I don’t know but I’m sure her family were. A third lady spent her time talking, quite loudly, on her phone telling the world how the staff were with-holding morphine from her and then making racist comments about one of the nurses. There was also mention of sweet jars filled with pills being knocked over by cats and GPs confiscating the lot! The fourth lady sadly had the start of dementia to deal with along with her other ailments. She slept for much of the day but came to life at visiting time and continued through the night. She had conversations with people who weren’t there, getting cross because they weren’t doing what she asked. One night I found her next to my bed (she was in the furthest bed from me!). Apparently I had a hidden stash of chocolate and alcohol and she wanted some. I tried to carefully disentangle her zimmer frame and feet from my drip lines and guide her back to bed but had to use the “call” button to get the night nurse to come and help out. The next night she needed a wee and shuffled to the middle of the ward and did what she had to do. Again I had to get up and go and find the night nurse, fearing that she’d slip and really hurt herself.

The fifth lady was in the bed next to me. She was elderly and obviously very poorly. She still had a smile on her face and tried so hard to not inconvenience the nurses. I had no option but to lie in my bed and listen to the medical team trying to clear her lungs to help ease her discomfort and perform various other procedures to help her last hours or days be more comfortable. No option but to overhear the conversations her family had around her bedside, remembering that they had to speak loud enough to be heard above the shouting into telephones on the other side of the room. Lady number five died.

She hated it so much that she left before her procedure. She returned a week later, and then started another kind of chemotherapy.

Three weeks passed without any more posts. People left comments on her last post to ask after her.

This is what I found yesterday:

Saturday, 9 October 2010

I told a fib – back to medical stuff!

Apologies all round but this is much more cheerful than normal.

I’m in a local Sue Ryder Hospice. Considering my severe dislike of hospitals this is out of this world.
I have a room to myself, staff who are so cheerful, considerate and just downright lovely!! The chef is brilliant and tempted me to eat again, all fresh and home cooked. I think I’d be perfectly happy to end my days here!

On the treatment side, I can eat, I haven’t slept so well for ages, much less pain, (less grumpy!!!) and and and…. haven’t been sick for 5 days (Yippee!!).

My legs haven’t changed but then my sodium isn’t improving quickly! But – at least it’s going in the right direction. My super duper friend Dr M came to visit today and we did a bit of an adventure on wheels around the beautiful grounds. She assures me she’s a trained wheelchair driver!!

Sunday

And now I’m waiting for visitors – hurrah! 2 wonderful friends from where we used to live and one of their delightful daughters. They arrived with an armful of cards from friends and themselves, along with presents. I have to admit to not being able to read the cards until later as one glance and I was quite choked! Mr Bad Fairy was able to get here too and meet them for the first time which was lovely. Despite living so close originally we never managed it previously, they’re now about an hour’s drive away from where we live. Anyway it was wonderful and I can’t thank them enough for making the effort.

Followed immediately by:

Playing on Rainbows

From Mr Bad Fairy

The last post was taken from The Bad Fairy’s notes whilst staying at the Sue Ryder Hospice. She insisted on flying home for the day on Thursday so we took Miss and Master Bad Fairy out of school for the afternoon and had a lovely time on a remarkably sunny day.

Sadly The Bad Fairy passed away peacefully in her sleep at 5.15pm the following day (Friday 8th October 2010), she always had great timing! I kissed her fairwell as she slept to start her on her next adventure.

The Bad Fairy has been an inspiration to all who knew her. She was always modest, selfless, ready to smile and on the side of the nurses! She will leave a big hole in our lives but her spirit lives on in Master and Miss BF.

The fairy dust will be sprinkled in an area of the garden dedicated to wildlife and directly below where the rainbows always rise.

I shall keep an eye on this blog and show it to old friends and new. If anyone reading this needs any help or a sprinkle of magic dust then the BF family will be here.

I exclaimed out loud and then I started to cry. It’s the next day and, whenever I think about her, I start to cry again.

I was diagnosed with breast cancer in January and I haven’t cried once this year. Someone I just read about dies and it makes me cry.

I don’t know what I expected by following a blog of someone with secondary breast cancer. Did I think she would get treatment and that she’d live a long life?

It was only last week that I read a booklet by one of the cancer charities about what happens after breast cancer treatment. It said that secondary breast cancer can’t be cured – it’s stage 4 (of 4), or advanced breast cancer – but can be controlled, sometimes for many years.

I started reading a blog in March of someone who died just seven months later.

I am trying not to dwell on what it must have been like for her friends and family but, at some point, they must have known that the prognosis was not good.

I feel sorry her husband for losing his wife. I feel sorry for her children for losing their mother. I feel sorry for her parents for losing their daughter. I feel sorry for her friends; she must have left a big hole in their lives. And I feel sorry for me, for losing someone wonderful to read.

I wish I could think that the Bad Fairy – Claire – is now riding on rainbows.

wordle

A status update is long overdue.

This extraordinary year is coming to an end and, in doing so, it is a tidy end to my cancer diagnosis, treatment and their side-effects. I am looking forward to a fresh start in 2011.

The end of treatment

While waiting for radiotherapy in September, I picked up a booklet by Macmillan about what happens after cancer treatment. It said that, instead of feeling relieved that treatment is finished, some people feel abandoned.

I didn’t expect to feel abandoned but I realised that there were aspects of going for treatment that I would miss. I resolved to make the most of the positives while I could.

I had radiotherapy at Reading Hospital. I took the train then walked to and from the hospital via the canal, which was populated by ducks, swans and birds.

In the last five days of treatment, I took the earlier train to Reading, bought a packet of brown pitta bread from Tesco on the way to the canal and fed it to the birds.

On the day that my appointment was delayed by 90 mins, I went around the various waiting rooms and took photos of the fish in the tanks.

I also took a photo of the board showing photos and names of the radiotherapy department staff so that I could name people in the thank-you letter I was going to give them on my last day.

I made six freshwater pearl necklaces for my favourite radiotherapists and the two assistant nurses who’d kept us company in the waiting rooms. I made silver and turquoise cuff-links for my oncologist and picked some earrings and bracelets for the other staff.

I was excited about seeing reactions but a little anxious about taking over the waiting room.

While waiting for my appointment, I asked to see a particular assistant nurse and opened the boxes with the pearl necklaces. I asked her and her colleague to choose a necklace each and then pass the rest out to the others on a list I gave them.

Later, various radiographers came to find me in the waiting room to thank me. I began to feel a bit overwhelmed, facing the reality that this would be the last time that I’d be getting the train to Reading, feeding birds on a canal and coming to a friendly place where people were courteous and kind to me and with whom I could talk to openly.

The tweets I sent from my phone that day never turned up but I do remember saying that I felt bereft that afternoon.

Two days later, sitting at my desk at home, I was overcome with a feeling of loneliness and a real need to meet up with a friend for tea and talk. By a couple of days later, I didn’t think about it any more.

Radiotherapy side-effects

I’d wondered whether I was going to get through radiotherapy without any side-effects except tiredness. In the end, the skin under my breast started to peel on the 15th day (of 18) of radiotherapy. It didn’t really hurt but I was given dressings which I could wear while the skin did its thing and healed and still allowed me to have showers.

In the following two weeks, that skin went dark and the top layer of larger patches started to come away. The skin on my nipple and surgery scar then went very dark and eventually flaked off. Again, no pain.

I’m still feeling tired – nowhere near as tired as before – but I expect it’s because I’m overweight (again), unfit and inactive.

My hair

My hair is growing back very slowly. It’s mostly white and looks very dramatic.

The milestones were interesting.

At first it just grew straight up, very soft. It then became long enough to lie flat.

It was eventually long enough to lie in a direction. Then my patch of dandruff returned!

Then it became long enough to get wonky from sleeping on it. And now it’s wavy.

I only realised last week that this must be what people meant when they said that, after chemotherapy, one’s hair grows back frizzy or curly.

I really like my hair – it’s almost a 1920s look – but I’d prefer it to be long enough to be sticky-uppy again.

People are quick to reassure me that my hair suits me but I think, how can it not – it is my own hair, after all! :-)

My only concern is that the slow growth is a sign that it’s going to stop growing soon. In the summer I talked to a lady also waiting for a blood test who had short white hair. I commented on it looking nice. She said she’d had chemo three years ago and her hair just stopped growing at that length.

The nursing assistant that I’d given the jewellery bundle to had been a hair dresser and she’d told me where to get whacky hair dye in Reading. I have Crazy Colour (the same brand I used in my 20s at university!) in pink and blue and will colour my hair next year. It’s a temporary colour and will wash out quickly.

Otherwise, the two hats that Becky made me have been keeping my head warm this winter. Valerie also knitted me a thick hat which I will wear. I never got around to sending one of the felted hats to Penny to bead for me. I am keeping my blue wig – it also serves the purpose of keeping my head warm but I need to be in a certain frame of mind to cope with the stares it attracts.

Breast care nurses

I made more freshwater pearl necklaces for the five Breast Care Nurses based at Windsor Hospital. They’d all helped me, with information, advice or reassurance, in person or on the phone throughout the year.

I sent them a thank-you  letter and the necklaces in the first week of December. I received a lovely thank-you card from one BCN I’d only ever talked to on the phone.

These people are so good at their jobs.  I’m very grateful that I could call on them whenever I needed to.

On being brave

Lying in bed recently I thought what a big deal it was that I went to parties and evening talks in London – that is, I was out and about – during chemo. It was a strange feeling but only lasted a moment.

From what I remember, I felt lousy (icky and glum) the first week after each session but fine the following two weeks (although very tired). To not go out and see people would have been daft.

The brief thought of it being an achievement made me realise what people had meant at the time when they’d said I was brave or had courage; despite having gone through the reality of chemotherapy myself, what chemotherapy represents as an idea is very powerful.

On coping

I was struck by the blogged conversation that Lisa Lynch had with one of her cancer nurses:

“So,” she said on the morning of my surgery, bounding up to my hospital bed around which my family were gathered, “it”s been so long that I haven”t even seen you to talk about your book!”

“Ah, of course ” so you’ve read it”" I asked.

“I have, and it’s really impressive.”

“Ah, thanks,” I said.

“I have to admit, though,” she said tentatively, “I found it to be quite a depressive read.” (Down the side of my eye I caught my old man preparing to put her right in the way only a Dad can.) “It’s very angry.”

“That’s a fair point,” I admitted. I couldn’t argue with that, really. I mean, while it was never exactly my intention with my book (and is, at the same time, difficult for me to judge), I expect that The C-Word can probably be as angry as it is daft.

But then came the clincher: “I hadn’t realised that you hadn’t coped.” Now that was something I could argue with.
“Whoa whoa whoa,” I protested, “I coped really well, actually. Being angry or feeling depressed doesn’t mean you’re not coping. It’s part of coping. I coped just fine, thank you.” (Dad’s I’ll-put-you-straight look now had more of a you-tell-’em-Lis air.)

“Oh okay,” she conceded. “I’m sure you did. I suppose I meant chemo. I hadn’t realised you hadn’t coped with that part.”

“But I did cope with it!” I squealed, getting redder with every syllable. “I mean, shit, it was a living hell, but I coped with it!”

“I’d just never realised how it had been for you,” she said, as I suddenly twigged that her perspective wasn’t borne out of disparagement, but of hurt at me keeping from her such an enormous part of my experience when I’d been so open about everything else. “I’d always imagined it hadn’t been as bad as you’d expected it to be. I mean, lots of women we see deal with it fine.”

As Lisa points out, people might think that the women deal with it fine because those women aren’t detailing their side-effects. I didn’t share everything either.

Chemotherapy wasn’t what I expected: it didn’t hurt, I only threw up once, I didn’t have bowel or mouth problems, my nails didn’t fall off and I didn’t have a metallic taste in my mouth.

However, after the second session, I really didn’t want any more.

Earlier in the year my cousin had told me that she’d opted for chemo after her diagnosis even though it wasn’t deemed necessary.  She stopped after three. I thought she was daft. But, once my side-effects showed up after the second session, I understood why she stopped.

I didn’t have Taxotere which has more side-effects than the FEC chemo I had. Still, I felt like giving up after two because every day for a week after each session, I felt sick much of the time and I felt glum. I didn’t want to do anything and I didn’t want to see anyone. In addition, each session was accompanied by the knowing dread that the side-effects would be stronger and last longer the next time. By the last (sixth) session, the side-effects lasted 10 days.

I am glad that I blogged about it at the time so that I can remember what it was like. Many people have a much worse experience of  chemo as I did but you will never catch me saying “chemo wasn’t that bad”.

For a while I thought I’d opt out of chemo if I got cancer again. But now I’m okay with the idea of it.

(And, by the way, if I do get cancer again, I can’t repeat the luxury of blissful ignorance I had this time, of not knowing a lot about what was going to happen next. In the unlikely event that there is a next time, I will be aware of the path mapped out for me and I think it will be very much harder.)

Where my head is now

I spend very little time thinking about what’s happened to me this year. My short hair should be a reminder whenever I look in the mirror but it’s now become a separate thing in my mind: my hair happens to be short and white, and I am waiting for it to grow.

I am very glad that the whole experience – from finding the lump, surgery and treatment – has been contained within a single year. I feel hopeful about the future.

I am so proud to have family and friends – including people I’ve only ever communicated with online – who have supported me this year. I have really appreciated it and am humbled by it. I hope that I can be as good a friend to you guys when you need support too.

Thank you.

I’m pretty sure that I don’t have cancer any more and that it won’t come back. I feel fine and – aside from tinnitus and having to lose about 45 lbs (20.5kg) again – I am fine.

I’ll try to blog about other interesting things in future!

Wishing you good health and happiness in 2011.

wordle

This is a full(-ish) transcript of the discussion on phone hacking from episode #12 of C4′s 10 O’Clock Live, first broadcast on Thursday 7 April 2011.

Participants: David Mitchell (DM), former News of the Word journalist Paul McMullan (PM) and former Deputy Labour Prime Minister, John Prescott (JP).

The video of the discussion is available officially from YouTube.

Please add a comment to suggest corrections.

DM: Paul. Surely, people in the public life, like John Prescott, have a right to privacy?

PM: Um, but then you could argue the electorate have a right know that people they’re voting for are not lying, not cheating and not stealing.

DM: Well, they have a right when their, in terms of their jobs that they’re paid to do but not, people are allowed to lie about all sorts of things in their private life. I delight in lying to all of my closest friends.

PM: Okay. But then maybe it’s the job of someone, a journalist to expose that, so that people at least have a fair taste of the hypocrisy and the corruption that many of our politicians indulge in.

DM: But it’s not just politicians is it? It’s a lot of people, who are famous for being actors, or popstars, or not famous for anything other than being famous. These aren’t all holders of high office that are getting snooped on.

PM: No, there’s no public interest defence when, with someone like Sienna Miller, umm, but then, uh, on Tuesday she’s prancing around in front of a camera, it’s why on Wednesday should she complain about it because, you know, she happens to be [caught/called ?] by a pap who maybe listened in to her messages to see where she’s gonna go.

JP: But you go much further than that. We’re talking about a criminal acts here.

PM: [It's not being?] criminal by MPs who are nicking their money from their expenses and shagging their secretary.

JP: I didn’t take a penny from anyone and I’m taking that charge from you as a typical journalist. You’re throwing out this line. Let me stick with the real point.

[talking over each other]

JP: Wait up. Let me just give you your article today. Hugh Grant did an interview with you, and you actually said, according to him- is this true – that phone hacking was an essential part of free society. Do you believe that?

PM: Uh, I believe that catching out corrupt politicians presents …

JP: Do you believe that general principle? That’s what I’m asking you.

PM: Yeah, all right, if you like.

JP: Let’s follow that. The phone hacking isn’t just the individual you might say, as you said in your article, if you’re successful you should then be open to phone-hacking. A lot of young people here deciding might be a politician, might be a scientist, might be successful in their life. According to you, that is your entitled right, then, to go and hack their phone and make a message about it and then sell it to some editor and some paper. Do you think that’s right?

PM: Um, yes, maybe for a fair amount of money.

JP: Well, let’s just follow it through because he’s being honest enough to say what it is.

[talking over eachother]

JP: But it doesn’t just involve the celebrity, if you like, or the successful person, it now involves all those people around them. You ring all the family friends.

PM: I’ve sat at the desk at the News of the World and the phone rings all the time. Celebrities ring every single time, desperate to get, to be in the paper, any kind of coverage. Making up silly stories about Jordan getting married, you got cancer, I’ve got this, that or the other. Which bit’s true, well we don’t know.

DM: The point is, that’s not true. Obviously there are celebrities who just want to be in the paper for nothing. But that’s not true of everyone who’s come to prominence.

JP: He says if they’re successful, it’s [as?] sufficient.

DM: At what point do you become fair game? I mean, if you done, say, presented the weather once?

JP: If you’re on telly, yes, for him.

DM: I mean are you fair game now because you’re on TV now?

PM: Well, I mean, Hugh Grant got me the other day clearly, so, umm.

JP: Do you think it was wrong of him, recording you?

PM: No, I thought it was hilarious.

JP: You think that were terrible?

[comments about not paying for beer]

PM: Fundamentally, privacy is the place where bad people do bad things.

JP: I’m not defending bad people.

PM: I mean, if you’re perfectly open. If you say “I never lied to my wife. I never cheated on my wife” and I stand open in front of the electorate “this is how I am” and you still got elected then that’s a fair point. But you didn’t. You pretended, you pretended. You lied to the electorate to present an image of yourself.

JP. I didn’t lie. Tell me the lie I gave to my electorate.

PM: Well, all the little old ladies up North, umm, Mr Brown called bigots, for example. Now, they might be a little bit cross.

DM: He only called one of them a bigot.

PM: Well, indeed.

JP: There’s only one bigot at this table and it’s him.

[talking over eachother]

PM: But why do you not want to know that the people you elect – Deputy Prime Minister – have lied and cheated?

[talking over eachother]

DM: It is a fair point, is it not, that investigating, that journalists have to investigate. If it’s a scandal about corruption, then we would be happy if it was found out in whatever, by whatever means neccessary?

JP: Okay, there has been some very good investigative journalism that has shown that. I’m not against that.

[talking over eachother]

JP: Today, you admit, if they’re successful, as I’m saying, take these young people, whatever career they choose, if they’re successful and they enter the stage – these [are] your words – they are open to phone hacking. Not only them, their family. A message from an individual – who somemight be some you say [proper?] to do it – you connect the family, repeat their person messages and then sell ‘em to the damn press. That’s what you do for the bloody living.

PM: Having said that, that paper was selling five million copies, you know, that’s twenty million people in the country were buying what we were up to. We were up to exposing people like you who because, you can’t put yourself above the normal…

JP: Committing criminal acts. Committing criminal acts to get the information.

PM: You made it criminal because you were sick and tired of getting caught tapping your secretaries and nicking mo – not you – and stealing …

JP: The News of the World admitted that …

PM: You changed the law in 2000 because you were falling like flies, you were getting caught out.

JP: It wasn’t like that at all. It was changed because of the Union rules, something else you got that wrong. The European Union changed that. It wasn’t governments that did it. They did it because Europe made [our?] a condition. But basically you’ve got to recognise – the News of the World, god blimey, what a paper. We know what it sells for. [?] people like you. The News of the World, said it was one rogue reporter. Two have gone to jail, two have been arrested; we have a Chief Executive, Rebekah Brooks, saying that she pays the Police for information,

DM: At that point, Rebekah Brooks is not here to defend herself, I have to say that. And she denies all those allegations.

JP: She said it to a Party [?] Committee. She committed a criminal act.

PM: Everyone here has a mobile phone. Fifty million people in Britain have a mobile phone. How many times and how many of you have thought “oh, I’ll just check to see if my boyfriend’s been up to anything” and you just press zero. Or press nine, actually, then four zeroes and you might get into his message system.

DM: I’m afraid we have to end wind up there.

[mayhem]

Other Paul McMullan transcripts:

• “People keep saying ‘phone hacking’ as if it’s a big deal” [ 5 July 2011]
• “Privacy is the place where bad people do bad things” [7 April 2011]
• “The bugger, bugged” by Hugh Grant [@ The New Statesman] [April 2011]

wordle

McMullan to Paxman: "Conceivably your girlfriend might have hacked into yours to see if you are having an affair"

This is a partial transcript of the BBC Newsnight discussion on phone-hacking, the interception of messages left on Milly Dowler’s phone, first broadcast 5 July 2011. It only includes the discussion directly involving Paul McMullan.

Participants: Jeremy Paxman (JP), Alastair Campbell and former News of the World journalist Paul McMullan (PM)

This Newsnight programme is available on BBC iPlayer.

Please add a comment to suggest corrections.

[introduction]

JP: Let’s start with you, Paul McMullen. Rebekah Brooks says that she’s staying, that she didn’t know what was going on in these alleged cases. Can she stay? Could she not have known?

PM: Umm. Funnily enough, I’ve always been quite loyal to her and, god knows why, ah, but, umm, one slip-up was when Hugh Grant came into the bar and we had a chat over the bar and I actually said “yeah, she knew all about it” to him but, you know, that was a bit of unguided bar talk. But, umm, the simple answer is, yes, course she did.

JP: She, of course, denies that.

PM: Oh, I see. Umm, right, well that’s an interesting position to take. And one that, you know, when they first said it’s just a rogue reporter, I thought about that’s so unfair. What about all the legitimate investigations that we’ve done. We’ve had to go into these grey areas and do these things. Surely you should be protecting us by saying, or taking the point, yes sometimes we have to do these things, not it’s just one person and we never knew anything about it.

JP: What was it like to work there at that time? I mean, Glenn Mulcaire, the Private Investigator, talks about a climate of constant pressure to deliver things.

PM: It is. You’re only as good as your next story. They used to do a byline count every year and, if you didn’t have enough bylines in the paper then it was goodbye, you know.

JP: And can you imagine yourself, in that sort of environment, ever doing something like listening to Milly Dowler’s phone messages?

PM: Yes, I thought about that today. Initially when someone asked me I said, well, for the first time, I’ve always been really proud to have been a News of the World reporter, you know, the biggest circulating English-language newspaper in the world. But suddenly I felt a bit ashamed because of what the parents have gone through. But, in reality, I’ve been thinking about it, taking a step back, and it’s not such a big deal. I mean, I was talking to someone from Kenya earlier today who said well, you know, the journalist might have helped. So they knew a little bit of extra information.

JP: Are you saying you don’t think it was an invasion of privacy; you don’t think it was a possible breach of the law; you don’t think it possibly obstructed the police enquiry; you don’t think it possibly caused distress to the parents? All of those things are outweighed?

PM: No, the mistake that was made was that, umm, he was so keen to get new messages, he deleted the old ones and that was dreadful and that alerted the family that someone was tampering with Milly’s phone and so it could have been her. And I …

JP: Can you imagine yourself doing that in those circumstances at that time?

PM: You know, I’m thinking about the, well, no, I didn’t anyway.

JP: I’m not suggesting you did. I’m asking; can you imagine yourself doing it, working at the News of the World at that time?

PM: Umm, I’ve got to say, when you’re investigating something, you’re really just trying to write the truth about an issue and, er, and you’re looking for an exclusive and, if that is available, then… I’ve been thinking to myself “would I have considered taking information from them” – because, you’ve got to say, it wasn’t a staff reporter who did that, it was a PI who has done it and then has rung up and said this is what’s happened. Do I put my fingers in my ears and say “please don’t tell me”? No, you don’t, you listen. And you think “that’s an interesting lead”. And, but, no, I should be trying to defend the indefensible because it’s not going to be a very popular position, but …

[Alistair Campbell speaks]

PM: People keep saying ‘phone hacking’, again, as if it’s a big deal. I’d like, I’d estimate that at least 10% of the population have hacked into someone’s phone. I mean, conceivably your girlfriend might have hacked into yours to see if you are having an affair. It’s so easy to do. I mean, umm, a mother worried that her teenage son was staying out late might hack into his phone to see what he’s up to. And that’s now being made illegal. It never used to be illegal. It used to be fair game. You used to be able to sit outside Buckingham Palace listening to Prince Charles talking about ridiculous ideas.

[Alistair Campbell speaks]

[end of studio discussion on this issue]

Other Paul McMullan transcripts:

Paul McMullan transcripts:

• “People keep saying ‘phone hacking’ as if it’s a big deal” [ 5 July 2011]
• “Privacy is the place where bad people do bad things” [7 April 2011]
• “The bugger, bugged” by Hugh Grant [@ The New Statesman] [April 2011]

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What planet does Paul McMullan come from?

Last night, for the second time this year, I watched in open-mouthed amazement Paul McMullan talking about the News of the World (NOTW) phone-hacking scandal. He was a journalist at the News of the World between 1994 and 2001.

My first exposure to him was in April on C4′s 10 O’Clock Live news show. Paul McMullan implies that privacy is a luxury when he said that “privacy is the place where bad people do bad things”.

He then goes on to say (edited):

“On Tuesday [Sienna Miller]‘s prancing around in front of a camera. Why on Wednesday should she complain about it because she happens to be caught by a pap who maybe listened in to her messages to see where she’s gonna go.”

Do read the full transcript.

My second exposure was on BBC Newsnight last night. I’d been following the acitvity on Twitter following the revelation that messages on Milly Dowler’s hacked phone had been deleted to make room for more messages while she was missing.

Paul’s last statement was (edited):

“People keep saying phone hacking as if it’s a big deal. I’d estimate that at least 10% of the population have hacked into someone’s phone. It’s so easy to do. And that’s now being made illegal. It never used to be illegal. It used to be fair game. You used to be able to sit outside Buckingham Palace listening to Prince Charles talking about ridiculous ideas.”

Please read the transcript.

Or are we just naive?

It”s all too easy to gasp at Paul McMullan’s outrageous comments and label him stupid or – because he says these things without any irony – consider him insane.

For him to say that phone-hacking is fair game, that journalists who use these techniques should be praised rather than villified says a lot about the world that he lives in. You have to appreciate that, in his world – where he works, the people he mixed with – these are reasonable ideas.

It’s an example of when someone is embedded in a way of thinking about the world when their immediate environment, friends and family do not challenge their beliefs – because they all think the same way. Amongst them, it’s normal. It’s only when they come into the world that the rest (most?) of us occupy, that there is a disconnect between the ease with which they share their barmy ideas and the reaction they receive.

What would the environment have to be for Paul McMullen not to have a clue that what he believes about phone-hacking is unreasonable? What if – WHAT IF – what he believes is normal for tabloid journalists and that it’s us that are being naive?

I mean, are we just in denial about lots of things? How did we think that stories got discovered? Always by above-board investigation? Really? Or, even, how can Tesco really afford to sell jeans for £3? Are they made by UK workers above the minimum wage? Of course not. And how do MacDonalds make their burgers so tasty? With healthy ingredients always?

Perhaps we should start taking responsibility for things that come a little too easily. We should ask more questions.

Why now?

This week’s revelations about the hacking of Milly Dowler’s phone has come from somewhere. She went missing in 2002. From The Guardian’s Monday article Missing Milly Dowler’s voicemail was hacked by News of the World:

“The paper made little effort to conceal the hacking from its readers [in] 2002″

and

“The newspaper also made no effort to conceal its activity from Surrey police. After it had hacked the message from the recruitment agency on Milly’s phone [in 2002], the paper informed police about it.”

What I want to know is, if this is old news, why is it coming back now? In whose interest is it? Where has the story come from? I feel as if I am being manipulated and I want to know who is behind it.

The government and the media occupy different worlds from us in terms of the rules they play by. For example, when a government spokesman uses the words “we need to be seen to care about [x]“, they don’t mean “we care about [x]” they really do mean, they think it’s important that they are seen to care about [x]. Manipulating us is so normal for them that it doesn’t even occur to them to conceal it.

I would like this horrid little saga to prompt a wider discussion of how stories come about. The implication is that dodgy tactics is somehow our fault for buying the newspapers. But I think that even NOTW readers would balk at some of the practices used to obtain stories if they were aware of them.

There has been a Twitter storm over the last two days to put pressure on companies to withdraw their ads from the News of the World. I’m glad it’s made a difference but I suspect it’ll only be temporary, reacting to bad press not principle.

Quite frankly, even if phone-hacking is endemic amongst tabloids, nothing short of the demise of the News of the World will satisfy me now.

Paul McMullan transcripts:

• “People keep saying ‘phone hacking’ as if it’s a big deal” [ 5 July 2011]
• “Privacy is the place where bad people do bad things” [7 April 2011]
• “The bugger, bugged” by Hugh Grant [@ The New Statesman] [April 2011]

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