Tag Archives: le cancer du sein inflammatoire

Memory full

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This worrying business is funny. But perhaps I should go back, not quite to the beginning but to the start of this chapter. As many of you know, following surgery to remove a rather pesky tumour, my wound does not behave well. Firstly, it picks up a variety of infections, most notably MRSA. There is a kerfuffle at the GP’s practice. I have a phone call from the practice nurse who has taken a swab from me to tell me there is a prescription waiting for me. I duly go along and collect it (or, more likely, Mr Mason collects it) and I begin taking some horrible antibiotics. The next morning, the GP himself phones to check I have collected the medicine and am taking it. This is pretty much unheard of. When I speak to the practice nurse sometime later and ask how many cases of community MRSA she sees, she says she has never seen a case of it in the practice before. Most cases are acquired and dealt with in hospital but mine has been acquired on a hospital visit and then carefully taken home and nurtured. As soon as it is only just healed, it is blasted with 25 sessions of radiotherapy from outside and 3 more sessions of the noxious Docetaxel from inside. It’s a combination that makes my wound and I break down and weep. So, the wound continues to be a bit horrible, never really healing, suffering from the occasional staph infection but never getting to the point where the skin is closed over it. It’s a pain under the arm. The wound has been here so long I am tempted to enter it on the annual voters’ registration form.

A couple of weeks ago I decide I Have Had Enough and speak to my breast care nurse, Vanessa. She is lovely and looks at it with concern on her face. She doesn’t know why it is not healing. I do not know why it is not healing. We are officially puzzled but I Have Had Enough. This means we get to call in the big guns and an appointment with the consultant surgeon is rustled up. During my time in Bangkok with Ms Mason I use Bactriban on it which is The Thing for people who have had motorbike accidents, apparently. Although I have not had a motorbike accident, we are optimistic it will clear the wound up. Alas, it does not. Neither does a week of drum banging and smudging at the cancer centre in Bristol. The wound is determined not to go anywhere and I am equally determined to get rid of it. Although I joke about it, the wound weeps and seeps onto clothing which can be embarrassing and it positively ruins the look of clean, crisp white sheeting. No wonder I am not a Domestic Goddess.

So, the day of the appointment comes and Mr Mason meets me at the hospital so we can see the consultant together. The lymphoedema nurse also thinks I have an infection in my arm and will not give me the wonderful Manual Lymphatic Drainage whic his so soothing in case she sends bacteria scooting all over my body. Mrs Hogben wants to look at everything. She squints at the wound and prods around it. She looks at my arm and touches it, pronouncing it a bit hot so she decides she will prescribe antibiotics. She also swabs it in case it is a return of MRSA. I ask if she will cut the scar out and re-stitch. She thinks she can do this but first must be sure I am free of anything untoward. In the case of Inflammatory breast cancer, it is thought better to wait a while before having any kind of reconstruction in case it spreads cancer cells throughout the body. As I am now 2 years post diagnosis, we can start to approach the subject but only sideways on as I am not sure it is for me. She cannot do so much as wave her scalpel at me until I am free  of suspected infection and also cancer. I have been having pains in my arm and shoulder, especially at night, and the lymphoedema nurse says it is not lymphoedema which is causing it. She has a curious look on her face as she says this. I mention the pains to Mrs Hogben and she immediately orders a CT scan and bone scan. And that is pretty much that. Come back in a week if it hasn’t cleared up, collect prescription on the way out and do not pass go. You know the kind of thing.

In the intervening week, I duly take the antibiotics and check my wound. It is still sticky and does not seem to be getting any better. The pain in my arm and shoulder wake me at night and I have to take pain killers. It is not a matter of getting in a comfortable position, it is just a matter of switching the pain off. So here is where we came in. Imagine if your computer was running a background programme that used quite a bit of memory. You’re not thinking about the programme running but you are aware your system is running slowly. That’s me. My background programme is worry. Worry about the cancer coming back or already being back. I am not aware of it but I know my daytime life is running slow. I am not functioning at full capacity. I sit about in my pyjamas and struggle to think about things or remember words. My memory is really running slowly. So many words are disappearing with this damned programme running in the background. I can’t remember the words for ‘limescale’, ‘washer’ or other plumbing-related terms. We are coming round to the next appointment and we’ll make some decisions, although most will be put on hold until the pesky tests are out of the way. Meanwhile I am reminded of my mortality when women in our Inflammatory breast cancer group on Facebook die, going downhill so quickly. One week, one was choosing a wedding dress, the next she was in a hospice and the Doctor said “If you want to get married, do it now”. There often seems no time to adjust to the scale and scope of the illness.

So I suppose this is what is running in the background right now. A programme on a loop that’s saying “What if?” I don’t think I’m being dramatic, I think that’s just how it is. I am not aware consciously of worrying but I reckon it accounts for the pyjama days and inability to remember words. Or at least, that’s my excuse.

Plans aborted – situation normal

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As we all know, planning is a sure fire way for things to go awry and this week is no exception. We have invitations for dinner with friends on Friday and Saturday. They are offering to come and collect us and then cook us delicious food, give us wine and generally allow us to relax and enjoy their company. Alas, life takes over. We receive a phone call from one of Mr Mason’s parents’ neighbours and he says Mr Mason Snr has been taken to hospital in an ambulance having collapsed in the garden. Mrs Mason Snr confirms this although she rarely talks on the phone. Mrs Mason Snr has not left the house in approximately 3 years since Mr Mason Snr collapsed similarly.

The first thing we do is grab phones, a change of clothing and toiletries, Dog and his comestibles and make ready to leave. It is about 3pm when we depart and the traffic is fairly light. On arrival, the kind neighbour leaves and we try and pick over the detail of what has actually happened. There is not much information. Mrs Mason Snr makes strenuous attempts to find reasons she cannot come to the hospital with us. She cannot find shoes, she cannot find a coat, her socks are too thick and finally she cannot find keys. This is the biggest issue as Mr Mason Snr has keys on him but, if we leave, we may not be able to get back in. Finally, they are found. Mr Mason Jnr brings the car back down the drive and I help his mother shuffle to the car. She is bemused, confused and frightened. She gets into the car and cannot shut the door, do her seatbelt up or think straight. We are on hand to help. Arriving at the hospital, I circumvent the reception at the Emergency Department by asking a Doctor where Emergency Majors is. This is where he is being held treated. We find him in a cubicle and, as luck would have it, the Doctor is with him. She treats him with great dignity and respect as he recounts what happened. He felt a tightness in his chest and difficulty breathing but he felt dizzy, too. The tightness in the chest went but he felt dizzy for a long time and was sick in the ambulance on the way to the hospital. The Doctor says she wants to do more tests on his heart ‘just in case’.

Mr Mason Snr is keen to tell us about his ambulance ride. He feels it is one of the worst drives he has ever had and he felt more comfortable in an armoured vehicle. When he was sick, the paramedic asked him if it was her driving that had done it. Clearly they had had a good rapport with their patient. A nurse comes to do another trace of his heart and we take keys from him, including his car keys which, given he hasn’t driven for months, seems an odd thing to keep in the pocket. I suspect it is habit. As we wait for the next stage in his treatment, a patient is brought into the next cubicle and clearly is suffering from some kind of dementia as she repeats over and over “Is it on time? Is it on time?” The staff try to reassure her but she suddenly shouts “I want to go to bed!” before going back to her previous repetitions. On being examined, she shouts out again “He’s hurting me!” and sounds so upset and frightened but there are lots of murmurings and apologies from the staff tending to her.

Mr Mason Snr is quickly moved into another ward where he can have a proper bed and within seconds, a nurse arrives with food (and a choice of 3 desserts!) and asks if he would like a cup of tea. Aside, she asks if he can manage a proper cup. The tea arrives in a mug and the man opposite begins to complain loudly that he wanted a mug but they gave him a small cup and it’s not fair! He spends the rest of the time we are at the hospital glaring at us and making harrumphing noises. As Mr Mason Snr bites into his sandwich, I take a photograph and email it to Miss and Master Mason so they won’t be too alarmed. At 7pm we leave and try to exit the hospital. Easier than it sounds. Apparently, once through the doors it is impossible to exit through the same doors and means we have to circumnavigate the corridors with me supporting Mrs Mason Snr who is clearly having trouble assimilating all that she sees and hears after 3 years indoors. She shuffles along, grasping my arm and, not having thought it through, I have given her my lymphoedema arm which is gripped soundly causing not a little pain. I pass her over to Mr Mason and he strides along with her tripping along in his wake. I keep saying “Hold onto your mother!” as though she may escape our clutches but really to stop her falling headlong and ending up in casualty.

Eventually we find our way out of the hospital and back to the car. They are going to check Mr Mason Snr’s blood in the middle of the night to see if there is any unusual activity so we decide to stay the night as we can’t leave Mrs Mason Jnr alone in the house. All plans aborted for now.

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Blow the wind southerly

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This blog is not for the faint-hearted. Its contents will never persuade anyone to give me work – certainly not after they read this post.

Mr Mason and I like to live dangerously. Well, just sometimes. Today is week 3 of our Mindfulness course and this week we are doing Mindful stretches. It’s the kind of scene you see in a good old fashioned sit-com. Lots of people lying on blankets on the floor stretching in a variety of poses. Some are lithe and supple, some are less so and therefore the rolling around is less attractive. There is also the problem of bringing the knees up to the chest. There is a palpable ripple of anxiety that goes around the room as the less flexible of us wonder whether there will be a telltale escape of gas. Having consumed just an apple on the way to the class, I wonder if it will be me and rarely have I squeezed the requisite muscles harder so as not to embarrass myself in front of a class full of the wealthy of Fulham together with a smattering of us cancer and ex-cancer lags. Luckily, no-one lets rip which is a huge relief. It could so easily have been Mr Mason. As a teenager I went to a yoga class with a friend. We were the lithe and supple ones then and the rest of the class were – well, probably in their thirties and upwards. During a bending move, one of the older ladies let out an enormous fart and my friend and I, together with the rest of the group, laughed. The difficulty came when the rest of the group stopped their polite giggle and we were still laughing, so much so that movement became impossible and we had tears of laughter running down our faces long after everyone else had gone back to the serious business of yoga. I believe we just left the class in the end and never went back.

Passing wind can be a fraught business. I was once in the ladies toilet at the Natural History Museum with my friend L (she of the plastic bag knickers) and, once in the cubicle, she farted loudly. On emerging, she asked me whether I thought it was rude to fart in a public toilet. I think the answer has to be no. If not in a toilet, then where? On a trip to Newcastle with her once, she also let rip loudly as we were walking along. She says she cannot help it but I can’t help feeling there is a sense of merriment about her flatulence and that she is perhaps more at ease with herself than many of us are. Before we were married, Mr Mason and I were shopping when I was overcome with that terrible urge we are all aware of (apart from my friend, L, obviously) and succumbed to it silently and deadly. It was so overwhelming I moved away, my eyes watering. Mr Mason, still in the days of viewing his bride-to-be as wholesome and attractive, glared menacingly at a young man who was also shopping at the same time. When we emerged, Mr Mason asked if I had smelled the terrible aroma. I admitted I had. He went on to say he had given the perpetrator a suitably disdainful look to let him know he knew he was the source of the terrible stench. It was many years before I could admit the perpetrator was myself and that I put it down to his Mum making me eat Smash (the dehydrated potato product that, reconstituted with water, tasted like I imagine cardboard tastes). The Smash also still had lumps in. I rest my case. Mr Mason’s godfather is extremely deaf and often lets rip, possibly congratulating himself in slipping one out silently. Unfortunately for him, the rest of us are all possessed of good hearing.

That evening, as we retire, I make my way into the bedroom to hear a girl saying “Look at her! Did you ever see a woman as ugly as that?” which quite upset me until I realised Radio 4 was on and it was a programme about The Twits. Mr Mason has not smuggled a small child in with the express purpose of upsetting me. What a relief. As I root through my box of medication to find the requisite pills to take, Mr Mason takes a sudden interest. In many respects, Mr Mason and Dog are as one in that they take interest in the noise of anything vaguely crinkly eg plastic packets, biscuit packets, crisp packets. They see them as a source of treats which, in this case, is not forthcoming for Mr Mason. They also have synchronised their bladders somehow which would surely make the basis for a good study. I turn out the light and lie in the darkness, knowing that sleep will be coming for me shortly, reflecting on what an entertaining thing flatulence is and that, old as I am, I will never cease to find it funny. Happily, I just can’t grow up.

Bustin’ out all over

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Tuesday is the day I get to see my bust. I had a plaster cast made a few weeks ago and it has since gone to an artist to go wild with their creative juices and slap paint or whatever on it. I am grateful mine has not gone to Gilbert and George. During the day I feel tired. Beyond tired. I do my mindfulness practice mid-morning and fall asleep. I could sleep anywhere. In the afternoon I have a little nap, thinking this will help. It does not. I hurt in all kinds of places. The soles of my feet feel bruised so walking is painful. My back hurts and, given the choice, I would curl up on the sofa and not go out but I am determined to attend the private view of my cast along with at least 3 of my friends’. My friend Mo calls to confirm she is going with another friend, Margaret. It’s nice to have moral support as I don’t know what I will be faced with. She floats the idea of a meal afterwards in Brick Lane. It sounds lovely but it’s so long since I have been out in the evening that I’m just not sure if I can do it.

On leaving the tube station, we miss Brick Lane by a mile and walk past the end of it, totally in the wrong direction. I am feeling hot and in a lot of pain so this is not the right time to make a mistake. If I felt energetic or even pain-free, it would not be a problem but this evening is not one of those occasions. We walk back in the direction we have come from and cross the road to ask a community police officer where it is. He points across the road to the junction we have been standing at. Sigh. We walk down Brick Lane and are assaulted on all sides by people wanting us to eat in their restaurants. Every type of approach is tried, including “Do you want to eat in the worst restaurant in Brick Lane?” an offer which, like others, we refuse. Eventually we reach the Brick Lane Art Gallery which is bursting at the seams with people who are spilling out onto the pavement, drinking wine and beer and happily chatting. We make our way inside and see our two friends who have already arrived and point me in the direction of my cast. On the way I see Jane who organised the whole exhibition and made the casts. She looks happy and rightly so. The exhibition is brilliant and people are clearly enjoying it. It is so hot inside the gallery I am immediately a soggy, over-heated lump. My glasses steam up, just to make my joy complete. My cast is exquisite. In hues of pink and green, it is simply beautiful. As I am exclaiming over it, a young man approaches and asks if this is my cast. When I confirm it is, he tells me he is the artist who decorated it. Skev  has done a superb job and it is really good to meet the man who handled me!

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We meet up with other people we know who have also had themselves cast and Mr Mason takes lots of photos, many of them with me looking damp and slightly demented.

Eventually we wander out into the warm evening and make our way back down Brick Lane with Mo and Margaret. We are enticed into a curry house which is nice but feels a bit as though it’s lost its heart and is now a tourist attraction. I suspect there are many more authentic curry houses in the vicinity but the food is fine and the service is good. By this time I am seriously in pain and very, very tired so we agree to take a cab home as we all live in a similar area. It is so wonderful to be whisked off without having to slog our way to the tube and also good to have friends who just understand without making a fuss.

Once my bust has finished its tour, I will be able to have it back. I have no idea where I will put it but it will be a reminder that there are more adventures to be had post cancer diagnosis and that I will keep on having them for as long as I can.

Cats beat humans – so what’s new?

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Today my body is refusing to play ball. Not literally, obviously, as I could still pick up and throw a ball should I choose to but it is saying a firm “No!” to all activity I tentatively suggest. It is the Young Women’s Group at Maggie’s today and I am part of it, despite my actual age and my feeling about 101 today. Getting out of bed is an intensely painful experience. It all hurts, every nook and cranny of my being aches and twinges. For some reason 2 toes on my left foot hurt when flexed even slightly, my ankles are painful, my left elbow hurts when just brushing the duvet cover and my back is a minefield of painful incendiaries, all waiting to explode individually at moments of their choosing. As for my thumbs, well, don’t even mention my thumbs. It’s a rebellion and I don’t know how to quell it except with liberal ingestion of analgesics and another stint on the sofa with my laptop and tv at the ready.

Yesterday was a better day. I ventured out to Shepherd’s Bush Market in search of fabric to use with my new sewing machine and then had lunch with my friend, Jane. Shepherd’s Bush Market is not somewhere I frequent normally but it is pouring with rain and it seems a good idea. I walk down the covered part of the market, enjoying the colourful displays of fruit and vegetables, wondering at the many varieties of yams on sale and searching out the fabric shops. An elderly Rastafarian man shuffles in front of me and calls out to a man the other side of the market. “Hey, Rasta man!” is the reply. “How you doing?” he calls back. “Yeah, good. You?” He doesn’t pause a beat. “Good. You wearing a condom?” he replies, shuffling off without waiting for a response. I guess this is some long-running joke between the two of them. I find a few shops who sell a multitude of fabrics. Every hue and weight of fabric, glossy, shiny and demure. The assistants are all male, Asian and overwhelmingly cheerful as they show me bolts of cloth. I make my choice and they make a great show of being able to rip the cloth in one piece. It is smiles all round.

I wend my way home on the bus being entertained by occasional shots of the back of my head on the bus security system. I actually like being able to see who is on the top deck (there may be someone I know) and who is sitting behind me as well as checking my hair is behaving itself because, yes, my hair is definitely on the return. It is darker and curlier than before with a lot more white in it. But I don’t care. It’s hair and it’s still soft but has interesting whorls and movement in it. At least, I think so.

Lunch with Jane at the Foresters is lovely. We have not met for a while and it’s good to talk openly and frankly with someone who understands immediately where I am coming from. We discuss our cancer from the outset and agree that for anyone without cancer, it might seem weird, morbid or that we are obsessed with it. Before I had cancer, I thought treatment was intense and unpleasant but that once it was done, that was it. People were cured or terminal but that end of treatment meant end of cancer. I was so wrong. It is all consuming but not in a negative way. It colours so many things I do or don’t do each day. My mind is on it so many minutes of each day because, although it has been removed (or so we hope), it is now a part of me. It’s entwined with who I am and although I’m going to live long and prosper, it’s as integral to me as any other major experience. Clearly, physically I am changed but to expect me not to be emotionally changed too would be crazy. We talk about all kinds of stuff but really it’s cancer all the way.

Later in the afternoon, when the rain lets up, I go into the garden to survey our work of the weekend. New raised beds were installed and my tomato and courgette seedlings were installed. Spring onion and radish seeds were also sown and a sheet of netting put over the top to protect them from Freya who would otherwise use them as a new alfresco toilet. Alas, I am sorry to see she found netting no barrier to her ablutions and has used the beds not once but twice. She has clearly balanced on the netting and left her mark. Sigh. She is some kind of supercat who sneers at my seed bed protection. Cat 1, Human 0. The same old story.

I tried to find a photograph of Freya to put here but can’t find one. She will have to remain a cat of mystery (but not international – that would be crazy talk).