Stories of Cancer
Giving Voice to Real Experiences

The chemo emails

These are the emails I sent when I was having chemo. It was one of the projects I had to keep some structure in my life. After each treatment, as soon as I felt well enough, I would sit and write to my virtual support group of friends and family. They wanted news and I didn’t want to make loads of phone calls. As well as this it became good therapy for me – and although I didn’t know it at the time, became the start of this website.

I tried to balance the emails I sent, wanting to be cheerful as well as honest. I wanted people to think of me as positive and brave, even though I’ve argued for not having to be brave, I did want to keep people on side. Only Terry really knew how bad things are and a few very close friends who phone or visit regularly.

If you’ve read my stories about chemo then reading these emails might feel repetitive, as they provide the source material for the stories. Not even sure if its of any value putting them on the site but they exist and someone out there might be interested! There is more detail in here of the realities of chemo.

Subject: Update

Date: 17 February 2005

Hi everyone

I’ve been starting this email in my head for days now, but have been feeling so poorly that I thought I should leave it so that I didn’t just send you a list of symptoms and complaints.

Its now nearly a week since my first chemo treatment and although I knew it wasn’t going to be a picnic I didn’t expect it to be this horrible.

I won’t go on about it too much, but I will indulge a bit of a download. I’ve been in bed until yesterday feeling so poorly, with nausea, total exhaustion, dizziness and a heap of other symptoms that I won’t go into. The anti sickness drugs and steroids that you bring home with you keep the worst effects at bay, and I haven’t actually been sick at all, which is one plus. One part I particularly dislike is that the steroids keep me awake all night, with occasional dozing for an hour or so then when I wake up I’m usually having a hot flush and feeling sick again. Last night for the first time I slept properly, for about 3 hours till about 4am then again from 7-9. Brilliant, felt really pleased when I woke up. I hate not sleeping. I’ve been glad to have TV / video in the room so that I can just switch that on and drift through all sorts of crap without looking for my glasses and book, reading’s about the only other thing I’ve had the energy for.

The good news is that yesterday we walked into town, went to the fish shop and bought some fresh mackerel, and today we went round the park, great to be out and about again. It’s lovely to see spring coming, with crocuses everywhere and the roses starting to sprout. The daffs and snowdrops in my garden under the curly-wurly tree (contorted hazel) look lovely too. We saw four long tailed tits in the park. I felt tired when we got back but energised too, lovely to get some air and to be moving my body again.

For those of you who are into this sort of thing (and I know quite a lot of you therapist types out there will be!) I thought you might be interested in the dream I had last night. I was in a horse and cart, plodding through beautiful autumn countryside at sunset. The colours were phenomenal, red and orange everywhere, trees and houses silhouetted against the sky. As we drove along I realised that the colour wasn’t just the sunset and the autumn but that we were in a war. Fires were burning and bombs exploding. As we went into the city the colours changed and it felt more like early dawn, sort of washed out and grey, with craters and bombed out buildings. I think this is probably a dream about my physical / chemical condition, as my immunity plummets so does my sense of energy and I’m feeling kind of washed out and grey at the moment! But it also got me thinking about something that’s been around for me since the beginning of this cancer journey, which is how much of what you read is about bravery and battling. Earlier on this week I was raving to mum on the phone about not wanting to be called ‘brave’. I think it was John Diamond (Nigella Lawson’s husband who died a few years ago) who said that having cancer didn’t make you automatically brave, and that he certainly didn’t see himself as brave. Everywhere you read about how important having a fighting spirit is, and this wasn’t sitting well with me either, being a lifelong pacifist. I’ve been trying to work out what my beliefs are about all this so that I can be supporting myself in optimising my health. Nor does it seem adequate to simply ‘think positive’ which can then become something I should be doing even when I’m feeling negative, which just makes me feel worse.

I’ve just got a stack of material from the Simontons in the States which is really good stuff and I know it will help when I start using it. Anyway to cut a long story short, I also thought that this dream is telling me something about the reality of what is going on for me. However much I don’t like the words of war, my body is a battle ground at the moment, with (possible) cancer cells, healthy cells, my immunity and the chemo all fighting away, and I’m learning to see it as all part of healing. I’d always seen healing as something gentle and loving, which of course it usually is, but I guess it takes many forms……

Lots of love Xxx

A week or so later….22 February

Hello all

Thought you’d all like a quick follow up note to say I’m feeling a lot better this week, tired and a bit icky but much improved on last week. Thank you for all your takes on the dream, and your messages of support. I enjoyed thinking about it with you all. Most of you saw it as a positive dream about survival, and I liked the idea that I’d been transported to the film set of Gone with the Wind….!

I’ve been out walking, longer walks, twice, and yesterday went swimming, and to the movies, and out for lunch, good to feel nearly normal again. Hair is still with me so far so good, forgot to tell you that I ended up trying the cold cap after all. They put a helmet thing on your head filled with cold gel (-25, very cold!) which acts as a tourniquet to stop the treatment getting to your scalp. Apparently it works for some women, so we’ll see if it works for me.

Lots of love to you all
xxx

Subject: Latest news from the battle zone
Date: 14 March 2005

Hello all
As usual, thanks for all your messages, cards and emails. I had some brilliant responses to my last round robins, particularly to the dream and it all helped my thinking along, especially about this fighting business. Think I could spend my life analysing dreams and writing to friends about them – anyone know of any way I could get paid for doing this?

So here I am ten days after chemo2, just starting to come out of the haze of exhaustion and sickness, but this time wasn’t as bad as I felt more in control, more able to adjust the medications they’d given me to suit what was happening to me, and of course this time its a bit more like known territory. The anxiety that I had last time before the treatment, not knowing what I was going to face and then experiencing all those alien symptoms in my body, all added to feeling so terrible and to the collapse afterwards.

Having said that its still horrible, the onslaught of the chemicals make you feel so ill in so many ways. This time though I can reassure myself that “I had this on day 5 last time round” (so glad I kept a diary).  I’m learning to adjust my expectations too, especially at this stage when I could get very frustrated if I let myself get hooked by how I think I should be feeling and behaving (ie wanting to be as normal). As a bit of energy comes back and the symptoms lessen, so does the desire to do things, and I can feel nearly normal some of the time, but I’m not and soon get reminded if I try to do too much. At the moment, having one goal a day / one activity a day feels like all I can do. Writing this is today’s activity.

I now have the best part of three weeks before the next treatment, I get an extra week this cycle because the session would have fallen on Good Friday. I hope to be walking the Derbyshire hills instead. So I will be emerging back into the world this week and be contacting some of you (probably not those of you in Canada or Australia though) to see if you fancy a walk or a juice at the juice bar. I think my social life for the next few months is going to be mostly day / lunch time, I get so tired in the evenings and am usually in bed by 9.00. My email cancer buddy Jill keeps reminding me to have afternoon naps and I thought I was quite good at that but I often forget and suddenly its tea time. If I could crack that maybe evenings will come back into the frame. Time has taken on a totally different shape for me, its drifting along like a slow river and I’m floating around with it, living much more day to day, minute to minute than I ever have before.

I’m watching a lot of telly, my companion in the long steroid-induced sleepless nights, watching programmes that I would only have seen occasionally before, taping everything half way decent (soaps and crime fiction mostly) so that I have something to watch at 4.00 am other than “Italian for Business” or wrestling.  When I’m at my worst even reading feels too hard. When I do read, I’m reading crime fiction, the simplest stuff.  I’ve recently discovered, thanks to a friend, the Number One Ladies Detective Agency, ideal reading for a person with limited cognitive abilities. I’m also reading poetry. I’ve never really done poetry before but Terry has been reading me Mary Oliver’s poetry, particularly Wild Geese, to support me and distract me from the chemo and the cold cap. It has been a comfort and somehow it feels easier to read now, perhaps it’s fitting my slower pace of life.

My sister in law sent me a book of Julia Darling’s poetry. Julia was diagnosed with breast cancer some years ago, and produces the most wonderful words to describe what has been happening to her. She lives in the North East and it felt really synchronistic when the day after her poems arrived I saw an advert for her doing a lunch time poetry reading at the library. Unfortunately it was day 6 following treatment so I wasn’t feeling too good but Terry drove me in and Joan came to meet me from the car, to hold me up if I felt ill. Julia’s book is called “Sudden Collapses in Public Places” and that somehow helped me to get there, I might not be the only one having a sudden collapse. It was well worth the effort, she was brilliant, so funny and smart with a great attitude to her illness and the health system.

One of the poems in her collection is called “Chemotherapy” and she describes really well how small your life gets.

I never thought that life could get this small,
that I would care so much about a cup,
the taste of tea, the texture of a shawl,
and whether or not I should get up.

I’ve also enjoyed reading her blog and she has a good take on this fighting spirit / war business, visualizing her cancer as a rag tag army of drunken soldiers, lying about under a tree, occasionally rousing themselves for another go. Suffice it to say I’ve changed my thinking about that, partly due to feedback from all of you. Whether I want it to be or not, this is a war, or at least a battle, my blood cells are fighting for my life even if I’m not.  Quite into the idea of being a gentle warrior, when I have the energy… and of visualising the chemo chemicals as being an important part of my army, though it can be hard sometimes to see them as being on my side.

I’m hoping to feel well enough to catch up with some of you some time soon. I think the pattern will be that I won’t plan on doing anything the week after a treatment, the second week I’ll do bits of small walks and shopping and the third week will be the optimum week for socialising. Whatever I arrange with you will have to be provisional, depending on how I feel on the day. Also if you have an infection of any sort please cancel any arrangements we have as my immunity will get increasingly compromised as time goes on.

In spite of the cold cap I have lost a lot of hair though I’m told it would be more if I hadn’t had the cold cap. I still have a fringe and its more thin than disappeared altogether at the moment. There is a definite bald patch appearing on top though. Terry and I went to the Headstart project a couple of weeks back where they sell scarves and try and teach you how to tie them. There were these two elderly women volunteers who fussed over us and competed with each other to try and help, Terry said afterwards it was like a Victoria Wood sketch, it was mad. Poor Terry had only come to help me decide which colours suited me best, but Vera decided that he could learn how to do all this fancy stuff with the scarves at the back, where I couldn’t reach, she had him trying to tie bows and plaiting long tresses and he’s thinking “I’m only a bloke I don’t do plaits and what’s a ruche anyway?”

Thanks to all of you, stalwart friends, you’ve been great. Apologies for the times when you’ve phoned and we’ve not got back to you, or when I’ve had to put the phone down in the middle of conversations when I’ve suddenly felt ill, I know you’re not taking it personally, and we / I will be in touch as and when we can. Terry’s not well at the moment either, but hopefully he’ll be better after a couple of days rest. The freezer is well stocked so we’re fine and I’m ready to do shopping and cooking again now.
Lots of love to you all
xx

10 April (chemo 3) email:

Hi everyone
Its now nearly 10 days since my third chemo, and its getting easier to tolerate as I’m managing the anti nausea drugs better (taking more of them, and I got a new one as well this time) I’m also getting used to the pattern and realising that the worst bit is actually a few days after the treatment – the Monday to Wednesday following treatment on Friday, with nausea & dizziness persisting into Thursday and Friday but by then the fatigue comes too, I stop taking the steroids and I start sleeping again so it all starts to feel more bearable. Now, Sunday, ten days after treatment I’m feeling a bit icky and tired but after two nights of normal sleep I can start to behave more normally so long as no one asks me to move or think too quickly!  So although it’s a horrible experience I feel now that I can do it, I can tolerate it for as long as I need to because I know it and the drugs work! In the early days I was scared of taking too many, I’d been told three a day of the anti-nausea drugs and so was waiting to take one every 8 hours but feeling wretched for half that time. I wish the oncologist had said what he said this time: take as many as you want there’s no maximum dose… and the new drug he’s given me is more effective too.

However along with the new one came more side effects, so I’m going to take care not to take too many. My face has been bright red and the soles of my feet have been red hot, along with a few other inconveniences, like constipation, but these can all be managed and are worth suffering for the sake of reduced sickness.

Liz came with me this time and because they were so over-run after Easter, we got taken upstairs to the private clinic. A free upgrade. I wasn’t about to complain. Actually not much different, apart from being quieter and they bring you lunch and fetch your take-home drugs for you (Terry normally does this). The cold cap was a different system, attached to a machine which keeps the temperature constant, saving the need for a new one half way through. It also fitted better and was more comfortable. However they did insist it had to be on for an hour and a half following the treatment finishing where downstairs they only leave it on for half an hour following treatment. Is this the private sector giving what is needed and public sector pushing people through? Or are they more cautious? Whatever it was a pain having to wait that long. They didn’t have hot water bottles upstairs and I missed my teddy bear bottle that I got downstairs to keep me warm. They had blankets and heat pads but it wasn’t the same.

My head is now pretty bald on top, which might be due to the cold cap in session two not fitting properly, I remember thinking it wasn’t touching the top of my head but not saying anything… Anyway its also very thin everywhere now and I am pretty fed up of it, it looks dreadful all the time, patchy and wispy, so I am wearing scarves / hats a lot anyway. I’m going to get it shaved off I think. I’m also sick of hoovering the bed in the morning and clearing the sink strainer of hairs. It’s everywhere. It’s bad enough having moulting cats in the house without me adding to the stuff. The women at the Headstart project suggest that you wear a pair of tights (legs cut off) on your head to save all this inconvenience but that feels horrible, (not to mention what it looks like!) especially when my scalp is sore. It feels itchy and sore at the start of the ‘shedding cycle’, two weeks after treatment. Still not bought a wig and not sure if I’ll bother. Probably need to go and try some on to see what they’re like, but I imagine them being hot and itchy where cotton scarves and hats feel so comfortable.

This time round I felt the steroid ‘high’ that the oncologist spoke of. Previously all I’d noticed was the sleeplessness, and probably because I was feeling so dreadful I hadn’t the space to notice anything else. This time I had a few quite manic times last weekend when I was relatively active and I started writing what may become the first chapter of my book. “Journal of a Gentle Warrior” has been suggested for a working title, I also thought maybe “Journey of a Gentle Warrior” would do. I’ve also started reading books about cancer, which I wasn’t interested in before but now I’ve read Lance Armstrong’s book as well as a couple of books by women who’ve had breast cancer, one called “I’ve got cancer but it hasn’t got me” which I thought was a good title.  Not many of the books resonate with me, especially those written by women being treated in the private health care system. It just sounds totally different.

My dreams have come back with my sleep filled nights, and I’ve been dreaming about being in strange countries (I think one of them might be canada, which we all know is a very strange place!) feeling lost and confused, looking for my clothes, fearing being left behind when everyone else is going out on a trip. Even when I find my clothes I’m not sure I’ve got the right ones as everyone else is dressed for the cold in big fur coats and boots. I’ve also had a couple of very angry dreams, even throwing things at people, can’t remember what I was angry about now though in one of them it was jealousy that someone had the chance to play with lovely jewellery and I hadn’t even got my photos sorted out. When I woke up I was still angry. Terry has born the brunt, yesterday any excuse and I was horrible to him. I guess this means I’m moving out of the denial stage?! I quite liked denial: can I go back there now please?

I have a new hobby. I’ve bought a colouring book of mandalas from round the world and some expensive crayons and am loving it. It feels creative and spiritual without being hard work, and I can do it when I watch telly if I’m watching crap which most of the time I am!

I’m going to a cancer support centre every Wednesday, where I get one to one chat with a nurse therapist, reiki treatment and relaxation class / classes on diet etc, not to mention a free lunch. I’ve also just finished my buddhist evening class on stress and pain management (also worked for nausea and fatigue management) on Thursdays. Both courses have really helped in terms of support, love and relaxation, I am so chilled these days and only get stressed when I have to do something to do with work. I’m still in the process of ceasing trading temporarily. Its nearly all done now, but the smallest things do get to me, like the bank misplacing a cheque, and a client sending money to me rather than my colleague…then discovering on the day of treatment that transferring it over to her is more complicated than it should be. When I get frustrated I feel like (metaphorically, as I’m usually on the phone) whipping my hat off and saying stop being horrible to me I’m having chemotherapy, but I usually stop before I get to that point.

I’ve been walking a lot, on Good Friday 26 of us went up Kinder Scout in Derbyshire. Some of us, including me, turned round before the final ascent but even our break away group were still out walking for over four hours so that felt like a real achievement to me. I was tired at the end of the day but felt great. Having an extra week in the cycle was a real bonus and I went out a fair bit. Also went to Yorkshire with Liz to see the rock where her father’s ashes are scattered and then we went for a walk up to a waterfall that I can’t remember the name of but it was very beautiful and a lovely day, a memory to sustain me when I’m not able to be out in the hills.

Terry is no worse but unfortunately not a lot better either, he has to have more antibiotics and may need surgery once this deep seated infection has cleared. We seem to be managing okay with a little help from our friends, thanks for the shopping folks, and we are certainly eating well and looking after ourselves and each other though doing housework and gardening are pretty low on the priority list these days. We are hoping he will be well enough to take me to Christie’s this time but just in case he isn’t, is anyone free a week on Friday morning, the 22nd, to be a reserve companion? We’re usually there all morning and home by lunch time.  Let me know

Anyway I’m open for business (of the socialising type) again now: visits / walks if any of you are free over the next 10 days, give me a call, it would be good to see you. I have a nap most afternoons now so you’ll get the machine if I’m asleep.

As usual thanks for all your emails and messages, keep ‘em coming and keep letting me know what’s happening in your lives so that I don’t get too self obsessed
Love to you all
xxxx

11 April 2005
PS my hair is gone!
The lovely Kevin has been round and cut it very very short, not quite shaven but close
I feel (and look) great, liberated by it, the Sinead O Connor look is definitely me.

Subject: Chemo 4 – half way through
Date: 23 April 2005

Hi everyone
4th treatment yesterday. It seemed to come round very quickly, too quickly for my liking as I was still feeling quite tired and didn’t feel that I had enough ‘normal’ time before going back again.

It was a hard day. The waiting was longer than we’d had before, it was after 12.30 before we were in the treatment room (this for a 9.15 appointment) and around 2.30 by the time we left. The department that took the blood tests seemed to be more stretched than usual and took ages to give me the tests and then longer to get the results through to the oncologist, so by the time I got to the chemo suite we were at the end of the queue.

I had a longer conversation this time with the oncologist about the different drugs and about whether I could shorten the treatment to say 6 rather than 8 sessions. He was saying that 8 is best but if I’m not tolerating it well it could be reduced. I thought it might be helpful to me to know more about the results of the tests they’d done on the tumour, some of which we hadn’t asked for previously.

These results pointed to chemo and radiotherapy being the best treatments, so I felt reassured we were on the right track. The tumour wasn’t very hormone receptive, with a low score on oestregen (15%) and progersterone (0) so tamoxifen / arimidex is going to be of limited value but they might want to stick me on it anyway. I also got a low score for Her2 (good news) so don’t need to be thinking about herceptin, just as well given the difficulties some women are having getting it.

The bad news was the Ki67 indicator which was very high, over 60%, which backs up what we already knew – aggressive, fast dividing, most likely to spread type of tumour. Though we need to remember that the signs are good that it ‘s not likely to have spread, as the lymph glands weren’t affected (though it can spread in other ways, hence the chemo) and it was caught at early stage.

All this took me to a new layer of coming out of denial …. and has left me thinking that I should try and tolerate the full course of 8 sessions. Which means, for those of you that I’ve been talking about holidays with, that I’m not likely to be up for much in August, and will be having radiotherapy in September for three weeks… so not sure when the energy for travel will come back.

The oncologist gave us all this news in such a matter of fact way that I didn’t really take it in at the time and I think Terry was more upset than I was. I must be better at doing denial than he is.

When we eventually got into the room with the nurse for the treatment there was the cold cap decision to be made again and I knew I was dreading it but hoped that if the hat fit me better that it wouldn’t be so bad. In the room they had the machines that we’d had last time up in the private suite, so my heart raised a bit as this was much easier to tolerate than the caps from the freezer which are colder and heavier. However these machines had only just arrived and they weren’t using them yet. When she put the usual, old style, cap on my head it felt colder and more painful than ever before, even though it was big enough for me, and of course I have so much less hair there is less protection than there was. I cried, in fact I wept and wept, and Terry helped me to take it off after about 10 minutes, I just couldn’t bear the thing any longer. I think there were some tears for the anticipated baldness, and also for the realisation that this tumour was really nasty and that I will probably be going the full distance of 8 treatments. My last email talked about me not having hardly any hair left now, but by the time of my next treatment I will almost certainly be shiny bald (calm down Cal) (Cal has been reminding me of how sexy Audrey Hepburn was in For Whom the Bell Tolls, much appreciated to know that someone will be turned on by it!). I’m wearing a hat or scarf most of the time anyway, even indoors as my ears get cold. Thank you so much for telling me about “buffers” I love the one that you sent me D and P, many thanks, and a good coincidence of N telling me about them within 24 hours of my conversation with D. Figure when something comes to you from two directions at once it has to be worth taking note of.

After being ambivalent about wigs, I went with Liz to get fitted for one just in case I felt the need. I’d seen some pretty trendy bandana and braid combos which I really fancied. It wasn’t to be. The wig shop at the hospital (which is the only place you can spend the “prescription”) at only does “petite and average wigs madame”. Don’t know if it’s a family thing but my head has always been above average, like the rest of me, wish I’d had the wit to say that at the time. So no wig for me, but I am going to channel some of my anger into seeing if anything can be changed: either getting the wig from another shop with the money from the hospital or getting the hospital shop to do something or if it comes to it Liz and I are going to protest outside the hospital with a banner saying “big wigs for big heads, now!”  Stepdaughter has the acronym ready for the campaign – WIGH CRAP – Women Insist on the Granting of Follicular Headgear for Cranially Advantaged Persons! I wasn’t sure if I really wanted a wig anyway but as my sister said I certainly didn’t want the choice to be taken away from me, and the woman in the shop was pretty insensitive, looking back now I think she was just embarrassed but I did get a bit wound up about it after the event. As usual the chemo nurse was fantastic and she got onto the finance department straight away so they are getting back to me… watch this space, can’t stop my campaigning nature coming out even when I’m exhausted!

Don’t know if you read the poems I sent out with a previous email. Julia Darling, the poet I was really taken with and went to see, died last week. Nine years since her diagnosis. Very sad but she certainly used her life well and fully, she was a powerhouse of creativity, writing plays and drama for Radio 4 as well as novels and poems. Well done Julia, you will be missed by lots of people.

Terry has told me that these emails might be too long for some of you but I guess you don’t have to read them, and though I think all of you want to be on this list do let me know if you prefer not to get them.

No dreams this time, they usually appear at the end of this week when I start sleeping normally again. Thanks for the lovely dream book P, the pictures in it are fabulous and deserve to be framed rather than left in the book.

Think of me in the next few days as I go through the worst bits… and think of me getting better by the end of the week. Thanks again for all your emails, gifts, phone calls and visits, I feel really well supported by all my lovely friends
Love xx xx

24 April 2005
PS It was Ingrid Bergman not Audrey Hepburn – my mistake – maybe there was another movie with Audrey in with shaved head? Of course she pioneered the urchin cut didn’t she? or did she, I don’t know any more! Thank goodness for you film buffs out there, I have to put the mistake down to chemo brain, I’ve been doing all sorts of strange things lately like walking out of a shop the other day without my cash back…. though I had menopause brain before chemo brain so could be either.

Other PS forgot to say Terry is still unwell, maybe slightly better but waiting for a scan now in a fortnight’s time and then maybe they’ll know more about what is going on.
Love to you all
xxx

Subject: Round 5 and counting
Date: 17 May 2005

Hi all
Well, over half way through now, with the fifth treatment last Friday. I now feel I can make it to the end of all 8 treatments though another three also feels like three I could well do without.

The fatigue gets worse with each treatment but that’s somewhat compensated for by me feeling better able to manage the nausea. My oncologist was away last Friday so saw the nurse specialist and she was much better in terms of making suggestions about which drugs to take and when, so feel that I’m doing even better this time, though still nauseous and wobbly right now. As she said by the end of the 8 treatments I’ll know exactly how to manage it all… but as Terry said we hope we won’t have to know how to do it ever again!

We’ve just been for a walk round the park that felt good, though there’s a chill in the air it was good to be out after a couple of days of doing very little. I bought myself a couple of little hand fans (£1 for two!) for the horrendous hot flushes which are my main complaint at the moment, especially when they come with a nauseous dizzy spell at the same time, usually just as I’m falling asleep… I’m sooo tired after averaging about three hours sleep a night for the last four nights. I stop taking the steroids today so tonight might be better.

Kylie Minogue’s got breast cancer now… its everywhere…. I must have fallen asleep on the remote control this morning so the telly woke me up with this news which was weird, it just seemed to switch itself on for that item.

We heard yesterday that CW died on Sunday. She was a very old friend (ex girlfriend of Terry’s) and landlady of our “home from home”, a cottage in the Northumbrian countryside. I got close to her too over the years, especially when Terry and I had split up and I used to go up to the cottage on my own and C would come up to visit me. We did some fabulous walks together over the years. Some of you know her and the cottage, and I know we all remember it with fondness as one of the best ‘holiday homes’ we’ve stayed in because it was so remote and comfortable and beautiful, even with its occasional flaws (Aga break downs, feral cats, getting through the mud at the bottom gate) I loved it. The peacocks that came to visit for their daily raisin treats, the white pigeons in the dove loft and the curlews calling overhead. It was in the middle of a sheep farm so we would see the lambs being born and the sheep getting ready for ‘topping’ (mating). Indoors I’d build a fire from scavenged wood in the huge open fireplace every evening and every morning we’d lie in bed watching the bird feeder hanging outside the bedroom window bringing green woodpeckers, nuthatches, every variety of tits and finches to inches away from the end of our bed. Not to mention its location in the glorious “Shire” that C was so fond of, where we explored every corner and knew every walk without maps. One day when we were snowed in we walked 5 miles (10 altogether) to get a loaf of bread and a Guardian.

The funeral is the beginning of next week and we’re not sure if we’re well enough to travel all the way to Newcastle. I will probably be feeling a bit better but Terry is still ‘proper poorly’. His scan has ruled out the likelihood of these lumps being malignant which is a relief. Sorry if I’ve been a bit coy about what’s wrong with him, its a bit sensitive, well very sensitive for him, he has infected cysts in the testicular / prostate region and after 8 weeks the antibiotics are still not working. He’s back at the hospital on Friday to see what’s next. Presumably surgery is on the cards at some stage. We are certainly getting to know the NHS very well these days from the inside. A&E at the Infirmary is awful. At least at the cancer hospital, though very stretched, is a comfortable enough place, which you need with all the waiting around you do.

So we’ll see how we both are at the weekend and then decide, we do want to go and say goodbye to her in the way she wanted: apparently she has the hour at the crematorium all planned out. Her friend P says she was ‘stroppy to the end’ ~ great to hear that she stayed true to herself, that she died peacefully and angrily with people she loved and who loved her, and mostly pain free. She had kidney cancer which had already spread to her lungs and liver when it was discovered, so we knew she wouldn’t have long but we prayed for her to have longer and we had hoped to see her again, having not seen her since last summer.

This was to be a quick email, it’s amazing when I start where I find the energy from and how I’m still sitting here over an hour after I started. So I’ll finish now but want to say thanks to all of you for visits, messages, flowers, thanks for hanging on in there with me. I have 9 draft emails in my draft box which are waiting to be sent to those of you who’ve sent me emails recently, will reply soon I promise.

Latest hobbies: Su Doku and tapestry….
Hair news: shaved off, gone, now I really look like someone with cancer

Wig news: the hospital are going to give me the money to get a wig from somewhere else. I’m following C’s stroppy way of being and sometimes it pays off. Ironically now I’m bald I quite like the Woman with Attitude look and its getting too hot to wear anything other than my big floppy hats, so may not bother with the wig anyway!

Right I’m stopping now
Love you all
xxx

Being friends with someone dying from cancer at this time was pretty tough. I spoke to C a couple of times on the phone but found it hard to hear this strong active woman sounding so weak and poorly. Then we got some more bad news:

Sent: 30 May 2005 10:55
To: LB (sister)
Subject: hello

Hi L
Sorry for not picking the phone up last night, we were reeling from
some more bad news: another friend from Newcastle, who was living in
India, committed suicide on Saturday. You can never know what turmoil
people are living with on the inside… we hadn’t seen her for a while
but its another shock, so much death around at the moment, finding it
hard to keep my stuff “in the box”. Till now I’ve been saying “thinking
about cancer, about having a life threatening illness is on hold, I
just need to survive the chemo”. That approach is crumbling now in the
face of the deaths of two friends…

How many times did I think I was at my lowest ebb, and think I couldn’t continue. (with chemotherapy I mean, I was never as low as suicide). Each time I thought I was at my lowest I got worse. My energy became more depleted, my white and red blood cell counts got lower and lower. Now I know what they mean by bravery. Just keeping going through this is either stupid or brave. I was so low I didn’t send out a group email after round 6, and my next one was about round 7.

Subject: update
Date: 1 July 2005

Hello all
Today was my 7th trip to the cancer hospital and each time it’s been different, there’s always some variation on the process. This time my oncologist wasn’t there [again] and we got to see a registrar who we’d not met before. After we’d spent ages asking lots of questions we had to wait for the blood count results to come over from histology. Bad news, my blood count was too low for them to proceed. So here I am home again and we go back next week for number 7. This has thrown out my diary, and there’s quite a few of you I will need to phone to re-arrange our plans. After a night of restless anxiety and early waking I feel quite wiped out and fed up about the delay.

Although in some ways the chemo has got easier, the fatigue definitely has a cumulative effect and I’m pretty tired now for most of the time. Getting out for walks has been great therapy for me as I feel more normal when I’m walking though the recent hot weather has been a challenge and I had to turn back from an uphill bit recently on a very humid day.

Soon after treatment 6 as well as feeling tired I got pretty emotional, feeling that I couldn’t carry on, and hearing of some women only having 6 treatments felt pretty sorry for myself: why do I have to have 8? can I trust my oncologist to be doing the right thing? what’s the difference between 6 & 8 anyway? Realised after lots of tears and wonderful support from Terry that underneath all this was that old familiar feeling of frustration at being out of control, and once I realised that I felt better, started thinking about what I am in control of (diet, exercise etc), and also got on the phone to the breast cancer care help line who reassured me that 8 treatments was the normal protocol. Today meeting another doctor also gave me the chance to discuss it further and he said 8 is becoming the standard for this particular drug and that I’ll get maximum benefit from doing them all. So on we go, not much further now…

The other thing that’s getting harder is that my veins are not happy about all these powerful drugs being pumped into them. Last time the chemo nurse spent quite a while trying to find a good vein, ended up having to bring another nurse in, and today they even had trouble drawing blood for the tests, it hurt and I bubbled (geordie for cried) a wee bit. I reckon my veins go into hiding as soon as we walk into the place. So maybe another week will give my veins a bit more time to recover, hope so anyway.

Between number 5 and 6 I asked for an extra week in the cycle and we had a series of trips away: we went to C’s funeral in the north east, stayed in a brilliant B&B in Richmond. Was really glad to be able to get there as it was only a week after the treatment and wasn’t feeling great, so it was good to take it slowly and stay over for two nights. The week after that we went to cat/house sit for our friends in Derbyshire and had a lovely time with lots of walks, then the week after that we went to the Lakes for a few days. The weather was great and we really enjoyed redoing old walks and revisiting familiar places around Ambleside and Grasmere. Can’t wait to get back up there again. We had booked to go the weekend before the next treatment but now that’s become the weekend after the next treatment [does that make sense?]  I’ve had to cancel it… talk about being out of control, my diary’s a mess!

Thanks as usual for all your messages, support, company on walks and meals cooked, love you all
xxx

      At last, after all these months it was suddenly all over. Thank goodness.

Subject: chemotherapy – done now
Date: 17 August 2005

Hello all
Sorry it’s taken me so long to write this email, and thanks to all of you who have written asking how I am. I will get round to writing to you all individually soon.

Well its done, the last chemo was on 29th July. It was touch and go as my blood count was lower than it should have been (they usually only treat people with a score of 3 and above, mine was 2.6). I think the oncologist took a look at my face and knew that it was now or never, I think if they hadn’t have done it then I might not have gone back again. Since the treatment I’ve been pretty knocked out, tired and tearful, in some ways the worst one of all, but as I say that I think no, the first one was the worst…. but my digestion feels in poor shape. Because of the low blood count they gave me a course of antibiotics to take a week after the treatment, and the antibiotics label said to avoid indigestion treatments. This was really hard and I had a night of agony and sleeplessness before going to see a pharmacist who said I could take the gaviscon / rennies so long as it was two hours away from taking the antibiotics. That was a relief and I also discovered Aloe Vera juice which helped. This whole journey often feels like a crash course in drugs management. Anyway this week I’m feeling a lot better just tired, though I still need to remember to chew my food very slowly!

Had a great time the end of last week when my sister came over from Toronto, she’d had a few days down south working and had managed to arrange to fly home again from Manchester. So she was here for two nights and it was lovely to have her all to myself for all that time, though I adore my nieces, we had many more grown up conversations without them around. L came over too and my parents came up on Friday so we had a nice family day.

Terry and I are off to the Lakes this weekend for a week, really looking forward to it, I know that walking is the best cure for me, the more I can do the better. When we walk from here down to the river and round the lakes there are loads of benches so I can keep stopping to rest if I need to, don’t get so many of them on the fells… on the other hand wonderful as the river valley is there are no hills so I don’t get the same views nor exercise. I hope to get as much time as possible in the Lakes once the radiotherapy’s over with. That starts in September, every day for three weeks. Not looking forward to having to go to the hospital every day, still it won’t be as incapacitating as the chemo has been and the treatment itself only lasts a matter of minutes I think.

I’m enjoying the summer, my garden has had lots of attention from a gardener who really knows his stuff and when its fine I can sit out there on my new garden bench with a comfy cushion or two or lay on my sunbed in the shade with my latest book. I’ve been reading Cloud Atlas by David Mitchell, a very clever book, an emotional roller coaster, nearly gave up in anger twice felt like throwing it through the window… but I think this is the feeling he wants to engender. It’s a good novel about inhumanity and greed. One of the few upsides to chemo is lots of time spent lying about reading.

Anyway will stop there for now
Hope all is well with all of you
Lots of love
xxxxx