Tag Archives: Living with secondary cancer

Lark’s Diary XIV

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Things have been a bit scary and there have been lots of changes here at home which Archie and I don’t really understand. I am so glad Archie is with me as he’s a good brother except when he puts my head in his mouth but it’s just his way of showing me that he’s in charge. It does make my ears wet, though, and it’s a bit tickly. Firstly, Mum has been in bed for quite a long time because she is very tired and has been hot, too. I know she’s been sad because her Dad died and she cried a bit so I climbed onto the bed and gave her a long cuddle which she likes. She’s been on the telephone a lot of the time talking to people called “Dickheads”. I’m not sure what they are but apparently they’re not very nice people and it’s something to do with ‘insurance’. Another really annoying thing is that pigeons have decided to live in the virginia creeper at the front of the house, right between the windows of the front bedroom and the dressing room and they are always squawking and making noise but we can’t get at them as they are too high up. Another bad thing that has happened is the white and orange cat which belongs to Grandma. She can’t have him where she lives now so he lives with us, usually under the bed although I have seen him trying to climb out the windows to catch the pigeon. Maybe I should help him a bit with a gentle shove. He also shouts all the time and he is the greediest cat in the world. He keeps trying to hit me but he avoids Big Archie. Mum and Mark have been behaving strangely too,with big bags of clothes and we didn’t understand what was going on. One weekend we went on a really big walk until my legs nearly dropped off. There was a big ditch and because we were thirsty, I jumped in and then found out it was very deep and it went right up to my shoulders so I was covered in mud but it felt nice and cool.  Mum said I looked like a vagabond which might be something like a Dickhead but she didn’t sound so cross when she said it. Really Mum doesn’t get properly cross with us unless we do something really bad which is nice because I think it shows she loves us. By the time we got home we were nice and dry.

Anyway, the next day the gardener came over to see us and put our beds in the back of the car along with some toys and one of Mum’s cardigans and he took us away without Mum or Mark. Archie and I were scared although we like the gardener but Archie remembered when he had gone to stay with Uncle Phil once and Mum and Mark came back for us. He took us to something called ‘Kennels’ where there were other d0gs staying without their owners and I’m a bit ashamed to say I cried a lot and kept everybody awake for the first two days, singing the song of my people, but Archie told me that Mum and Mark would never leave us on our own and that we might make some new friends to play with. The gardener came to see us every couple of days and brought us Bonio and pig’s ears which kept us happy. Then one day he came and packed up our toys and beds and put us in the car and TOOK US HOME! It was the best day of my life when I saw the gates to the house and Archie was very excited, too. We played in the garden with Mark for a while and then he let us in the house to see Mum who was in bed and very tired. She told me she had been a long, long way away in a plane (that’s one of those things that buzz about the sky although I don’t know how they keep up in the air) to see Francesca who is Mum’s real baby. She said that Francesca had had a baby of her own although I can’t see how because Francesca only looks big enough to have a kitten. It’s all very exciting and I’m looking forward to sniffing the baby and giving it a big kiss (so long as Mum doesn’t see me do it).

So all is well except for the tv. Mum and I watch dog programmes together sometimes but the other day I looked up and there was a big plane coming towards us and it frightened me so much I fell off the bed. I think Mum might have laughed a bit. She has asked me to put in my diary that she will be back writing very soon and sends you all lots of love and a picture of the baby.

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PS I don’t think the baby is that fond of Mum yet 😦

Brian’s Dirty Pickles

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My memory continues to be poor only this time it shocks even me. The oncologist is going on holiday. Normally, he tells us, he takes action holidays (and he does say action rather than activity, creating a picture of a mild-mannered James Bond with a shock of black hair which must have been the bane of his mother’s life), but this time, they are going to Greece for a week. I think it is Crete or maybe Rhodes but certainly one of the bigger islands that we have been to and I wonder whether it will still be warm enough at that time of year. I remember taking the children to Greece in the autumn half-term and we had terrific storms over night. I think this is also the holiday where I warn them to be careful when walking at night so that they don’t fall over as the path to our apartment has lots of loose stones on it. Of course, as I am telling them this, I am also looking at the amazing night sky and inevitably fall over, coming down hard on one knee, necessitating a bag of frozen peas to be applied as often as possible and restricting the flexibility of my knee for the whole holiday. Sigh. Sod’s law, of course.

So, back to the memory failure. With Dr Chaudhuri taking his holiday when I would normally see him, I just have to get my blood taken at the end of the preceding week. On Saturday, I look in my diary to see I have chemo on the following Monday. It then sinks in that I have entirely forgotten to have bloods taken and feel like a complete waste of space. Sometimes, however, I just think things can’t go much worse so just whistle a happy tune and decide to arrive at the hospital early on the Monday morning. I thought that 8.45 would see the blood clinic fairly empty but the ageing population of Lincoln are made of sterner stuff and arrive in droves, packing the room out. This is not part of my clever plan. I decide to brave the filthy looks of everybody waiting and go through to see the phlebotomists who I have always found incredibly kind. I explain briefly about my brain mis-function and the cheerful lady says she will ‘do me’ straight away. “You’ve got a lot to think about” she says as I berate my stupidity. Some days a little kindness can go an awfully long way. I don’t have to wait an age for the chemo to arrive from pharmacy, either, so we are finished by early afternoon.

The following day is another hospital day with a CT scan which I am not looking forward to. The nurse manages admirably to insert the canula, especially as my Best Vein has been used only the day before. Every scan is a horrible reminder about what is really going on. Sometimes I can almost forget I have cancer, even though there is always a physical reminder in terms of exhaustion, fatigue, lots of drugs to take, itchiness and, of course, loss of a body part. Speaking of the loss of body part, I am getting rather fed up with the breaking down of the scar on a regular basis. I think I have complained on here before but it doesn’t seem to matter what I do, my camisole or bra always shows a little blood or weepy stuff on it by the end of the day. But it’s the scans that remind me exactly what illness I have. The scary one. The big C. The scan goes well with cheerful staff and black humour amongst the patients and then we’re off to go and buy more garden equipment that will chop up logs with ease. I am resisting the idea of a chainsaw but am not sure how long I can hold out.

On Wednesday we are off to Gainsborough so I can speak to the members of West Lindsey CCG about my experience of cancer. I have managed to hook up with a fabulous woman called Clare who works for an organisation called Development Plus in the Early Presentation of Cancer programme. Read all about it through the link but one of the aims is to discuss early presentation symptoms to GPs and this is where I come in. We have been discussing and thinking about what I might do for a little while and the invitation extended by the CCG is just too good to turn down. Looking at their CVs, about half are clinicians with the rest coming from all areas of the community including an ex-Deputy Chief Inspector. I don’t like to think in detail about what I am going to say. It ruins the surprise (for me) and I feel I speak much better off the cuff. With my memory fiasco earlier on, I ask Mr Mason about 20 times what the subject is. Clare also helps by saying “It’s whatever you want it to be about”. I have put on makeup for the occasion which means, obviously, that I will not cry.  Ha ha ha. I have 20 minutes and by about 5 minutes in, the first fat tears roll down my face. Tissues are passed discreetly around the board room table and water is poured. I scrub at my face and determine to continue, whatever. As I near the end, having forgotten to check the time on my watch when I started, I ask if there are any questions or comments people would like to make. There is a genuinely stunned silence with sniffles and everything. I have reached them. I have touched them. I have told them where there were learning opportunities which were missed and where well-meaning acts went horribly wrong. I explained what it’s like to feel patronised, to feel like you’re on a conveyor belt and, hopefully most of all, what it’s like to live with secondary cancer. I make sure I have explained the symptoms of Inflammatory Breast Cancer, MY pesky little cancer, which starts off small, looking like something which is all too often recognised as benign – an insect bite, mastitis, something that can be treated with antibiotics – before it reveals its true aggressive nature. I receive comments of hope and congratulation on my way out. We go and have a cup of coffee to soothe our nerves and then Mr Mason and I go and buy me a hugely expensive DuBarry tweed jacket for Christmas and I treat myself to a beautiful, butter-soft leather DuBarry shoulder bag. I feel I have earned it but realise this is just a one-off or we will be bankrupt before next year.

On Thursday we go and pick up Ms Marsden from the station. As we pull to a stop, Dog spots her and his tail bangs vigorously against the boot in a canine welcoming dance.We are planning to hit Hemswell Cliff, the huge antique centre built on an old airfield the following day and steel ourselves for an overwhelming array of antiques and gew gaws from various ages and various prices. It’s lovely to see Ms Marsden as we just fall into conversation as though we were just talking the previous day. She arrives with some wonderful treats – Hotel Chocolat biscuits amongst other things. It’s been a long week for me already so I check out quite early leaving her and Mr Mason to put the world to rights.The shops on Friday are actually quite quiet and we manage to navigate our way around for at least  5 minutes before I find a diamond ring I like. We also pick up a beautiful copper log box and an old brass chestnut roaster so we can roast them over an open fire. Hmm, I think we could write a popular seasonal song about that! There is a pretty silver and rose gold ring which Ms Marsden likes and as I have forgotten her birthday (brain like a seive) I buy it for her, despite her protestations. It suits her. We like lots of furniture but it doesn’t all suit our homes so we just come home with those three pieces, worn out but happy. Ms Marsden jumps up and down, fetching me drinks and snacks. Mr Mason smokes some fish and comes up with a very decent version of kedgeree which is delicious. Once I have eaten, I have to pack myself off to bed as I’m unable to keep my eyes open.

The following morning, a florist’s van draws up with a beautiful bouquet for me from the CCG I talked to on Thursday. I am very touched, particularly by the thoughtful card which reads “The CCG team was really affected by what you said on 28th. The courage, fortitude but at the same time your pragmatic light touch to the challenges you face was humbling. With sincere thanks xx” I’m so glad it made sense to them and, hopefully, a difference.

We drive out to see the seals who have come in to give birth to their pups at Donna Nook, not that far from us. After we arrive, we see lots of people kitted out with super long lenses and binoculars and I wonder if we’ll be marked out as the newbies who turn up expecting to see seals with their own eyes. Well ha! in the face of those sceptics! We see seals aplenty and watch the bulls square up to each other making the most eerie noise. And boy, can they move on land! Even at my fittest I don’t think I could outrun a seal. I’m ashamed to say we are so excited to see them that I forget which kind they were but I think they are grey seals and really worth visiting. The car park is pretty full when we pull in and the only space left is a disabled one, which, as you know, is wider than most. A woman comes running up and asks very nicely but in a head-waggling way and with her voice pitched higher than normal if we would move the car over so she can squeeze in? I tell her it’s a disabled space and she looks at me, crestfallen, saying “Is it?” like I was a 5 year old who has filled his pants inauspiciiously. Later on, we see her on the walk and she looks at me pityingly when she sees my stick. I don’t even bare my teeth. Some days even the nicest people just get on your tit(s).

On the way to Donna Nook I point out a shop to Ms Marsden called Brian’s Pickles. As far as we can tell over several years, Brian does nothing but pickle. He has told us his pickles are requested in the highest circles and the finest hotels. They are bought for society events etc etc and seems generally a nice chap. Early one morning when I was awake when I shouldn’t have been, I found Brian’s Pickles Health Rating on the internet. 5 being the cleanest of establishments, Brian scores a lowly 1. This gives rise to speculation in the car as to what Brian is missing to get that all important 2 or, conversely, what he does or does not do to merit such a low score. Not washing hands? Not washing jars? We are mystified but feel better than possibly the higher echelons of society who always crave Brian’s Pickles.

It’s taken ages to get this blog down as I’m spending increasing time in bed feeling exhausted and in general pain. I try not to take the extra morphine available to me but I don’t want to live in bed, either. I just want it all to stop and go away. Cancer, I’m having none of you. You can fuck off and pester someone else although I can’t think who deserves it, either. Cancer, go and eat a jar of Brian’s Pickles and see how you feel then. A taste of your own medicine, perhaps.

How do I love thee?

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The real question for me today, however, is – how can I live well? Let me count the ways (apologies to Elizabeth Barratt Browning). I just don’t know how to live with secondary cancer and it’s not as if I can just be because that doesn’t seem possible, either. I find it very difficult to explain or describe how it feels to be in my situation. I talk to bereaved friends and tell them there is no one way to mourn someone, no right way, just the way you do it. I should apply the same logic and empathy to myself but I find it difficult. I suppose I am mourning my loss of life – the things ahead of me which I will never be around to see or do. And not knowing when that point will come is, of course, a real bugbear with me as I am a real planner. At the same time, when someone does advance a tentative theory as to how long I might live, I rail against it and feel murderous. The bottom line is I don’t want to die of cancer and not having any choice in the matter I find very difficult. Another stick to beat myself with is worrying about the future instead of getting on with the here and now. Taking time to smell the daisies, coffee or whatever you choose.

In my birth family, idleness is seen as a huge crime so relaxing and watching the world go by often leaves me feeling gulity, that I’ve missed out on something else I should be doing. Old family messages are horrible things. Strong, identifiable and yet difficult to get rid of. You would think by now I could just say “Fuck it” but there’s still a little gritty bit of something inside me that rubs and yet, unlike the oyster, it won’t produce any pearls. Today I try a limited amount of screaming, upsetting the dogs and Mr Mason and possibly bewildering the neighbours. The latter I don’t mind about but all screaming really leaves me with is a headache and sore throat, no peace.

Eventually I manage to get myself on track. I spend a long time in the shower, making the water as hot as I can stand and that feels good. I potter around the garden with the dogs which eventually leads to a little weeding and then picking up windfalls and then we are sorting and wrapping apples for the winter. As I write, Mr Mason is in the kitchen peeling and chopping apples for our various ways of preserving them. A couple of years ago, I would have led the preserving charge with verve and enthusiasm. These days, I don’t quite have the spark. Not at the moment, anyway. But things can always change.

And having put a tremendous amount of faith into a politician, my message for Jeremy Corbyn today is this:

Don’t go breaking my heart…