Monthly Archives: March 2013

Wrestling with old people

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We’ve been to see the in-laws. Sigh. Fidget. Sigh again. It wasn’t a duty visit because we don’t do those but we did have a distinct purpose. For some time, we’ve been planning to move to the country and it would mean we would be further away from the in-laws. As they’re in their late 80’s, we would like them to come with us so they could either live in an annexe or very close by. That way we could keep an eye on them, do the shopping, a bit of cleaning, make sure their health is OK – all the usual stuff. I think this is a pretty cool idea. They retain their independence and we get to spend more time with them and help out as and when we’re needed.

My FIL would come with us like a shot. He has already said so and, being gregarious, would make the most of small town or village life. But what do you say to someone who says ‘All my family are here, I can’t move’. Which family? ‘My mother, brother, grandmother’. Er, they’re all dead. ‘Yes, but they’re all in the cemetary’. You’ve never been there. Would you like to go there? ‘No’. How will they help you if you’re taken ill? ‘They will’. OK, well if they could come to the hospital and help you, do you think they would mind travelling a few extra miles to come to where we’ll be living? ‘Ha ha ha ha’.

The blinds are drawn in the real world and in my MIL’s mind. The house is dark and when I open the blinds, drawn against the possibility of someone with very long sight being able to observe her from a vantage point of approximately 50 yards away, she eyes me suspiciously. We raise the possibility that if they are unable to cope, Social Services might want to be involved and that might remove an element of choice from them. Having just had a conversation in which she said an old people’s home would not be for her, suddenly it is OK. This response is not based on any shred of realism but a childlike determination to say ‘No!’ to anything. Not leaving the house has been normality for years. Drawing all the blinds during the day is fairly new. Discouraging my FIL from leaving the house even to do small errands, like buy bread at the shop at the end of the road, is also fairly new. Any excursion is met with an enquiry of ‘Why do you need to go out? How long will you be?’. Kind neighbours are filling the gap in terms of getting shopping. Since a bout of shingles last Autumn, my FIL has gone out less as it left him exhausted but now he feels stronger, it has become something of a battleground. He needs the mental stimulation that Countdown and reminiscing about the war cannot give him. A trip to the opticians in a taxi gave him enough stimulation to make it an exciting experience. Six weeks later he is still talking about it and fondly remembering the taxi driver who waited for him as he went to collect his glasses.

We leave to drive home and I feel dejected, rejected and any other jecteds you can think of. Oh, and add frustrated to that list. For some strange reason I want these 2 people to live near me so I can keep an eye on them and smile fondly at the repetetive stories. I want to be able to roll my eyes when they talk about strange, hopeless friends we know by reputation only and answer up for my adult offspring when I am asked, in their presence, if they want a drink. I want to hear all over again about my FIL’s exploits in his career, his near misses with international disasters and having his footprints examined by a Bedouin tracker in Saudi Arabia to see if he was innocent of a payroll robbery.

I want to do all these things because I love the daft old buggers and I think living near us will be the best, healthiest decision they could make. I understand it’s a tough decision to take but I’d like them to make the leap of faith and believe we can deliver what we are offering.

So in the meantime I growl quietly from time to time feeling impotent and frustrated, wondering how they are feeling after our visit. I was so cross at one point I sat at my laptop and ordered hard copies of details of suitable bungalows for sale to be sent to my FIL. That’ll get them talking.

 

NED’s diary

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I think I am in recovery. I have finished most of my active treatment for cancer (Inflammatory breast cancer, for those of you who haven’t read before) and I’m just receiving an infusion of Herceptin every 3 weeks. So same old chemotherapy suite, slightly different drug cocktail. Before treatment even began, I was skimming through breast cancer forums looking for reassurance/information/salvation and I saw people referring to vodka, gin, whisky etc. In my innocence, I wondered whether the treatment had to be accompanied by alcohol in order for it to work properly. In my defence, your honour, they were very confusing days.

People don’t tend to say ‘you no longer have cancer’ any more, in my experience. Whether it’s because of the rise in litigation or simply because they are being honest and realistic, I don’t know, but I had to mentally arm wrestle my breast care nurse into admitting there was no evidence of disease. NED. It’s about as good as it gets, I believe.

It’s at this point we are encouraged to start making something of a normal life for ourselves again. That’s a strange thought in itself as life will never be the same again, as it isn’t after any of the millions of miniscule changes which happen in our ordinary lives, but in this case, the change feels pretty mega. For some of the time, I feel the same as before but then there is a shift, a timeslip, a crack in my emotional pavement and it’s all different. As you will appreciate, it’s hard to explain.

Recovery is all about having fun, enjoying ourselves and re-connecting where possible. It’s also about rest, rest and more rest. It’s a bit hard to know how to balance it. Exhaustion is a daily word. I am fed up with the word ‘tired’. It doesn’t convey the overwhelming feeling that pins me to the sofa sometimes. I am fed up with the word ‘pain’, too. I don’t know why I have lots of pain in different places and I don’t know what else to call it. I don’t know why my feet hurt so much, and my knees, when I’ve just got out of bed. I don’t know why my hands ache, or my back, or my head. It’s all related to the big C, I guess. Or something else. Who knows? It’s just a pain in every sense.

So, what does a recovery diary look like? I imagined well defined hedges of rest interspersed with flowery beds of activity and the occasional fallow plot for really deep relaxation. No. It’s packed. I feel like I am fully employed with recovery. You might imagine hospital appointments would be few and far between now. My diary is crammed with pieces of paper relating to appointments. It looks like I have a hectic work life. There are appointments for prosthesis fitting, sleeve fitting for a bloody lymphodoema, hospital appointments at different hospitals to check out some of the pain, reflexology appointments, new Cancer Centre induction appointments, psychologist appointments, relaxation appointments….and on and on it goes. In some ways, it’s nice not to be left alone to sit and wonder and I know I’m more in control of the appointments than I let on but phew! It takes my breath away sometimes to think of how much work there is in getting…different, back on track, re-connected. There are also appointments for cake, dragon boat racing, singing and for re-connecting with the world of work.

When I finished my last bout of chemotherapy in December, I thought I would be ready to go back to some kind of work by the end of March. How wrong I was. A couple of weeks ago I was feeling bad about not feeling up to it and talked to my cancer nurse specialist at Maggie’s. She looked incredulous (in a nice way). “It’s way, way too early to be thinking about that” she said which was quite reassuring. I had it in my head that the treatment phase (which lasted for 9 solid months, not counting the Herceptin) was the toughest bit and that after that I would be up and at ’em shortly after. I didn’t expect the recovery phase to be equally tough, albeit in a different way, and equally long. You live, thankfully, and learn.

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Things that aren’t there

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I am itchy. I am itchy in a place that no longer exists. I can read all the reasons why it happens and be excited about nerves re-knitting and all that but the problem still remains. I have an itch which I cannot scratch and no-one else can scratch it for me. It actually feels itchy a few centimetres from my body which obviously doesn’t make sense to anyone except me. I know where the itch is in mid-air and I can scratch in mid-air but it still doesn’t do the trick. Scratching real bits of me doesn’t help, either. I am stuck with a phantom itch for the time being and bloody annoying it is, too.

I have also lost my glasses. Not the normal ones I wear everyday but the ones that darken in sunlight. OK, it’s not been sunny here for ages but they have still walked and I want them back. The impotence of such loss is amazing. I look and look but still can’t find them. I can picture the case they are in, picture the glasses but it still doesn’t help in my hunt. I check every handbag I have, which takes quite some time. I even check bags I haven’t used for ages, knowing I wore the glasses more recently. I pull things out from the side of the sofa. I picture the case on top of the fireplace where they lived until I thought they should be put somewhere better.

It’s chemo brain again. I used to have a great memory and could remember details and stuff that was in my diary for weeks at a time. Now I can’t remember what I did 10 minutes ago. I saw someone the other day who greeted me warmly, asking how I was and saying they hadn’t seen me for a while. I smiled and nodded, thinking ‘Who is this person?’ He did look a bit familiar but I couldn’t remember anything about his medical history (which is kind of de rigeur in the cancer field – it seems rude not to know which cancer someone has got and what stage they are at). He was stage 4 which is terminal and I should have remembered him because he was telling me (again) that he had felt absolutely no symptoms and still doesn’t feel ill. And, of course, with a rotten diagnosis like that he is quite young. Sometimes it’s OK to say ‘I don’t remember’ and blame it on chemo brain but at other times it feels callous and cruel not to remember details like his. Sigh. Yet another side-effect of the treatment. Studies are being undertaken to find out how long this side-effect lasts and on which drug it is worst. I keep hoping I’ll recover and stop forgetting things. At least I remembered the story to tell you.

Back to scratching and hunting the glasses.

The Lowestoft Bendys

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A few weeks ago we went to Lowestoft for a weekend. It was really cold and the weather was a bit wild but our room overlooked the beautiful sandy beach and crashing sea so it didn’t really matter what the weather did. The staff at the hotel were lovely and gave us the sea view room simply because there was one available and they could.

We wandered about the town and went into shops at the same time simply because we could as we didn’t have Dog with us. Normally, one has to wait outside with Dog while the other goes rootling through charity shops or whatever. The rootling one then comes out to find a small crowd gathered around Dog cooing over him and trying to love him which he doesn’t always like. He is also an expert at putting his nose up women’s skirts and goosing them which MB says he taught him all himself. He’s not telling the truth, of course. Or at least, I don’t think so. If MB had the determination to teach such skills to Dog, he might also have taught him to do useful things and to be impeccably behaved, which he isn’t. Anyway, back to Lowestoft.

One of the fish and chip restaurants on the seafront looked appealing on the Saturday night. We thought we would eat early, just after 5pm. We went into the restaurant which wasn’t empty but the staff looked quizzically at us. ‘Can we have a table?’ I asked. ‘Sorry, we’ve stopped serving and we’re shut’. ‘It says on the door that you don’t shut until 6.30’. ‘That’s not right, we shut at 5’. Okaaaaay. Outside, I couldn’t resist taking a photo of their sign.Image

Fish and chip weddings. That’s the way to go!

I also found a sign which I thought was highly amusing. It concerns the Bendy family. Now, the Bendy family summons up all sorts of images in my mind – long dangly legs and arms made of foam and poseable in a variety of interesting ways. MB didn’t think it was amusing at all.

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It still made me snigger.

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Demons, dragons and zombies

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At the moment I’m struggling to compartmentalise my life. I do a lot of the right things – I have a To Do list which I add to and cross things off, for example, but I haven’t got the balance of being reintroduced to work with resting and relaxing yet. The ridiculous thing is that I don’t have much in the way of work but somehow, once I’ve read emails and responded, I seem to spend an awfully long time doing admin and feeling stressed about what I haven’t done, including the rest and relaxation bit. Yes, the old demon stress is back, courtesy of yours truly. Is there anything more annoying than creating stress for yourself? Probably, yes.

The duvet sliding down inside the cover, leaving a lot of cover at the top but no duvet – that’s annoying. People looking at my shorn head on the tube and discussing it between themselves without thinking to offer me  bloody seat – that’s annoying! Rude people in general annoy me – not holding doors open, not saying thank you or please, being impatient with hospital staff, people who block the pavement and don’t think to move, thoughtless people….. Wait, this is turning into a rant! It’s too soon in my blogging history to rant. I leave that to my daughter who is a champion ranter. If it was an Olympic sport, she would be gold medallist. Come to think of it, we’re all pretty good at ranting in our family. Not all the time, because that would be, well, very annoying.

What can I do to help with this miniscule work/life balance? Life looms large and needs to be grabbed hold of. Not enough time and too much life in me. So I’ll do different things in my newest life. No more weeping, wailing and gnashing of teeth – not today, anyway. I’ve been forced into changing so I want some say in some of the changes. Regain and retain control as far as possible. This is where the dragons and zombies come in. Dragon boat racing. I’ve seen it done and admired it but that was it. I never thought ‘I’ll join a team’ because it just never occurred to me. So now I have. There is a terrific team in Docklands called Wave Walkers and team members from Raging Dragons come over every other week to train with other newly emerging people like myself so we can regain fitness and have a lot of fun. Me, in a boat? Never! But I did it. I went there and did the preliminary safety stuff, helped carry the boat and then I got in it and paddled away. It was snowing, someone got taken off the boat with hypothermia and carted off in an ambulance; it was brilliant. I’m going back this weekend to do it all over again. Zombies? That’s for October. I’m going to dress up and scare people witless at some 5k Zombie run. It means makeup, walking in a funny way and moaning, as in a constant noise, not complaining. The dog’s coming, too, so I’ve got plenty of time to think of his costume. Do dogs become zombies? This October they do!

 

 

Bummer of a weekend

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One thing about chemotherapy is that it does its job and more. Not just affecting the pesky cancerous bits, it also wrecks other bodily systems and, in my doctors’ opinions, it has wrecked my guts. That and the mega amounts of other drugs I have been taking (all prescribed, I hasten to add). After a particularly memorable 60th birthday for Mark during which he listened as a strange doctor stuck his finger up his wife’s bottom (to clarify – the doctor was unknown to us, therefore strange; the doctor did not stick his finger up his own wife’s bottom, or not in our presence, anyway), it was decided that I should have a colonoscopy to ensure nothing untoward was lurking.

This weekend is the one for what they call ‘The Prep’. I received a lot of information from the rather sullen young man who made my appointment at CX. It can’t be much fun handing out information on this stuff to patients, I suppose, but he could have made an effort. The information was thorough if quite alarming and told me what to do beforehand as well as what to expect during the procedure.

Funnily enough, I’m not that bothered by the procedure.  I know I’ll have mild sedation so hope that will be enough to take my mind off people interfering with my nether regions. No, it’s the preparation that’s causing me problems. Today and until midday tomorrow, I have to exist on a diet of primarily white food. White bread, potatoes without skins, white fish, skinless chicken and butter. The only relief colourwise are the eggs I am allowed. It’s amazing how much you want a biscuit when you can’t have one. Or a cake. Or something else that isn’t on the white ‘low residue’ diet. A piece of fruit, for God’s sake. Forbidden. Sigh.

I know it’s only for 48 hours or so but it’s very frustrating. Slightly more worrying are the preparations for tomorrow. Any direction which begins ‘take 10 senna tablets’ has to be a bit concerning. This is followed by 2 more extra-strong laxative preparations which should be consumed within the next 5 hours. Advice suggests not to wander far from a toilet. No shit! Sorry, couldn’t resist that one. So tomorrow will see me hanging around the house, groaning and rushing to the loo every five minutes. Advice on the internet from those who have been through the procedure before is to buy some special toilet paper – nothing scratchy – and some wipes. After that, I cannot bear to go into further details so will leave it all to your fevered imaginations.

Suffice to say it has put rather a damper on my weekend. Yet another indignity to be endured. How we get used to all the prodding and probing, the disrobing, the dignity shorts, the poisons, the nuclear injections, the zapping of radiotherapy, the scalpel. Surely at the end I will emerge upgraded, a newer model of the previous me. I wonder if it will be an improvement?

Metaphorical shoes

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Getting ready to go to CX today for a scan of my right armpit (makes a girl fee so good) I vacillated between 2 pairs of shoes to wear. I wanted red. I am not a girly-girl but I like my clothes, bags and shoes. Nothing high, mind you. So the choice was a red suede pair of desert boots or a red suede pair of brogues. The desert boots are cool with good grippy soles but the brogues are more stylish and I hadn’t worn them in ages. I tried them on. And then I thought ‘Oh, they are a bit of a metaphor for cancer and me’.

I like the look of them. They are fabulous and have a nice narrowed square toe and they look good with what I’m wearing. But they have leather soles inside and out and that makes them a bit slippy and I’m a champion at falling over (or toppling, as my son calls it). So most of the time I feel like a red suede brogue – feeling good, my life neat and organised but underneath, it’s all a bit slippy and I could come crashing down at any moment. If the cancer returns then I pray for a recurrence rather than a secondary because at least that’s treatable and beatable. It’s this not knowing that is always lurking beneath the surface, waiting to topple me, to see me come crashing down. But I have to wear the red brogues, I have to be out there, risking humiliation and real-world toppling because otherwise I would not be me. It’s not the deepest metaphor in the world, I grant you, but it came to me this morning so I thought I would include it.

Today sees me off to CX, as we know, but first I’ll drop into Maggie’s and see who is there and have a chat and a cup of coffee. I like the warmth of the atmosphere and the way I can sit and be allowed to without someone bothering me. It’s always up to me if I want to participate or not. After the scan which is looking at a painful bit under my right arm – the side I still have a breast attached – I’ll go back to Maggie’s and meet my friend Suzannah for a chat and a bit of reassurance.

I’m feeling a bit all over the place today. A year on from my initial diagnosis and hospital still figures large in my life and uncertainty goes with it. But I will brave it in my red brogues and hope I don’t come crashing down on the Hammersmith roundabout or on one of the hospital’s shiny floors. Normal service with full humour will be restored tomorrow.

How it all began…

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When I began writing this blog, I went back to the very beginning of my story and started to write in detail about what happened. I think I should probably have started this blog a year ago, when I was first diagnosed with Inflammatory Breast Cancer. In case you have never heard of it, IBC is fairly rare (around 2% of women with breast cancer have this type) and aggressive. It moves fast and is not detected by a lump but by changes in the breast which can be diagnosed as an infection or insect bite.

But it’s too late to go all that way back. So much has happened in the last year and no doubt bits of the story will emerge. You’ll have to catch me up. I’ve met some fabulous people on the way and some really annoying ones. I’ve seen lovely healthcare professionals and some I would not recommend to my worst enemy. People I didn’t expect to step up did in a spectacular way and other friends I thought would be solidly behind me disappeared like mist.

It’s a strange old disease, cancer. It’s all consuming and a bit like having the most horrible full-time job in the world but its also great to see doctors and nurses working at their best and to see the bravery and humour of other patients.

I don’t have any particular aims with this blog other than to catalogue my thoughts and activities for my own amusement and if anyone else wants to read it, then that’s all good. I have a Facebook blog which has been running since the very beginning but think it’s time to move into something more general. Everyone is tired of the cancer. I’m tired of it and yet don’t feel up to getting back to work yet. Too much of me hurts.

But my brain is working, albeit with a shocking memory loss. Chemotherapy does awful things to your brain and I can’t remember so many things, including people’s names and the names of ordinary household things. It will all come back, or so I’m told.

Do I feel miserable and depressed about the cancer? No, not at all. It’s a bugger, that’s for sure, but I’m optimistic by nature and know more than ever that life is for living so I’m going to do just that. In my own way.

Welcome to my world!