Monthly Archives: August 2014

The case of the incredible shrinking woman

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Last week I spent time with my girlfriends, happily painting woobs. This week is somewhat different. Still not learning from the idea that I cannot plan a single day without things potentially going awry, I whizz off to my oncology appointment, telling Mr Mason that it will just be a normal appointment with nothing to worry about. I get blood taken and am called in to see the registrar as my consultant is on holiday. She asks me how I am and I tell her my breathing isn’t too good. I have noticed over the last few days that going upstairs makes me feel really out of breath. She is immediately worried and questions me about my temperature and any other symptoms. She decides to have my blood oxygen measured immediately and also to get me an emergency ct scan but first to go and get an x-ray to see what fluid is in my chest. Luckily, my friend Ms Marsden is on hand to keep me entertained and hold bags and clothing. The x-ray technician recognises me as is happening increasingly often, even in a hospital of this size.

The x-ray technician shows me a copy of the x-ray compared to the last one done in July and we agree there is less fluid there than before. He also comments on the camisole I am wearing in that the straps have plastic attachments whereas the ring which holds the straps is metal and therefore shows up on the x-ray. He tells me this is to do with costs and maximising profits. I wonder if he is doing a business degree in his spare time. We trot back to the oncologist who sees me again and she arranges for a nurse to insert a canula for a ct scan. The nurse who inserts the canula is friendly and comments on the bruising already on my arm from the blood taken earlier in the morning. Ms Marsden and I grab some food from the cafe and go to the ct scan area. Once inside, I am laid on the table while the iodine contrast is pumped into my arm. Now, with a ct scan you can feel the iodine go around the body as a flush which ends up by making you feel as though you have wet yourself. This happens within seconds but doesn’t happen this time and I can feel the iodine going into my arm but not the vein. I call out to get them to stop and the technician comes and rather techily detaches the iodine pump and tells me to sit with my arm up and an ice pack on. Then come the words I don’t want to hear. “You are going to go up to 6 South”. Aaarrrggghhh! This is a precursor to being kept in overnight which I really don’t want. I ask them to bring Ms Marsden in and we sit and make small talk until the porter arrives. He is also familiar.

Up on the ward, a nice oncology doctor, James, comes to see if he can canulate me. He removes the canula and puts a dressing on it. I seize the moment and nip to the loo only to find blood coursing down my arm and dripping on the floor, soaking my gown and causing me to shout “Oh, shit!” which Ms Marsden says was clearly audible from the ward. I grab a wad of paper towels and holding my arm up, make my way back to James who is slightly alarmed to see all the blood. He tries to clean me up and stop the flow of blood. The next thing is to put another canula in. But where? Another oncology doctor arrives. I have no idea of her name but she points to areas on me as though I am a piece of meat, taking my shoes off an examining my feet. i want to tell her she has to actually communicate with the patient rather than look at me like something on a slab but I am tired and really can’t be bothered to tell her something she should know.

Mr Mason arrives and relieves Ms Marsden who has stayed with me all day. The canula is inserted in my foot, an arterial blood sample is taken from my wrist and after the results come back, I am wheeled down to the first floor for another ct scan. The technician is tetchy, it being midway throuh the evening and she is even tetchier when she seems the canula is in my foot. She thinks this might not work but will grudgingly have a go. At least the iodine gets round my system this time and the technician says she thinks it will have worked well enough. I am back to the ward and Mr Mason goes home, without me. As there is no room on the proper oncology ward, I am left on the assessment ward but they give me a nice side room of my own and only disturb me 3 times during the night to monitor my vital signs and to give me a blood-thinning injection which hurts.

The next morning I am desperate to get out and go home. I don’t feel ill, just breathless, and I’m sure I can have a much better rest at home. Also my phone and ereader are rapidly running out of charge so I find myself resorting to reading an old copy of Chat or something similar and going over all the wrong answers on the crossword page. The consultant comes in to see me to say there is no blood clot, which is a relief, but that they don’t know why my breathing is so bad. They think it is damage from chemotherapy but that could be from a previous time or the 2 sessions I have had recently. It certainly means there will be no chemo today which is a bit of a blow. They are going to put me on steroids to try and help my lungs and then I may be able to have chemo the following week. Mr Mason arrives with toiletries and chargers and I clean myself up and plug in all the essentials. The registrar comes back at 3pm to say I can be discharged and we then wait, wait and wait some more. Finally, at around 7.30 I am given the all clear and we are on our way home. Why it takes so long to discharge me is not quite clear but apparently involves the length of time it takes to get drugs from the pharmacy. I am also being given antibiotics for what they think is a fungal infection which might account for the pain in my osophaegus when I am having steroids. We shall see.

I arrive home to find a copy of a letter from my consultant written to my GP. She updates her on what had been happening (although the letter is now out of date) and tells her that my weight has dropped to 1.4kg. This is a shock even to me. I know my weight has been dropping but to be the size of a very small cat is beyond even my capabilites. Just another case of the incredible shrinking woman, I guess.

Woobs!

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It’s been an interesting week. Chemotherapy is still making me feel incredibly tired. Most days I can easily sleep for 12 hours and there are quite a few pyjama days on the sofa. On Wednesday, however, I have an exciting appointment at Maggie’s. We are having a woob decorating session. What is a woob? I hear you cry. Woobs are the brainchild of Jane Hutchison who runs the charity Hello Beautiful, helping younger women to be aware of breast cancer. Woobs are wooden ‘breasts’ which come in 3 shapes, one representing a lumpectomy, one a reconstruction and one a mastectomy. Ms Frumin picks me up in her car, known as the boiled egg, and we set off for Maggie’s. Luckily I am familiar with the route as Ms Frumin is not good with direction and frequently tries to make turns which will take her home. At least she has a homing instinct and is a good driver, to boot.

We arrive at Maggie’s and immediately see 2 friends I haven’t seen in ages. One has come down from Cambridgeshire and another from Kent. More people arrive and we sit at the table which is laden with paints, pens and brushes and all say how we’re not good at painting and how awful our attempts may be but once we select our colours, our paints and our brushes, we seem to forget all that and become absorbed in the task. It feels a little like a really good school art session and we talk and laugh as we paint. Ms Frumin tells me later that she was not looking forward to the painting session at all but once she was there, she enjoyed it so much she stayed longer than she planned. The act of painting feels soothing and calming and I make a mental note to do more painting.

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I am also in receipt of 2 parcels this week. The first is sealed under many layers of tape and takes me a while to open. Once open, it reveals a spillage of loveliness. There are packets of jelly, chocolate buttons, honey, Angel Delight and tissues – everything I could want to deal with the permanent drippy nose and the limited ability to eat hard foods. I have not had Angel Delight in years butimmediately plan to start eating it again, courtesy of my school friend, Ms Peek. My second parcel is a fabulous hat and beautifully knitted socks for my chilly feet from my Norwegian friend, Ms Stokke. She is an absolute whizz with knitting needles and a crochet hook. It is a week in which I feel really taken care of by my friends. It takes the sting out of trying to find proper travel insurance. Now I am diagnosed as Stage IV, my current insurer declines to take care of me and refunds my policy. I check with others who have cancer on various Facebook pages to find personal recommendations of insurers. There are not really any good leads and some bright spark who doesn’t read the post tells me Boots does travel insurance. At this stage I just roll my eyes. I speak to a whole lot of people on the phone who, after taking all my details, decline to insure me. Sometimes they talk to the underwriter in which case I am offered a policy to mainland Europe which is actually no good when I am travelling to Thailand. One company will not consider me until October, the month I am travelling. They want a blood test done before I go and then for me to delay chemotherapy until I get home. The woman warns me “It will be expensive”. This I already know. Eventually I find a company who will insure me. It will cost £1700 for the two weeks we are travelling. I am just pleased to have found someone who will take a chance on me.

Noises Off

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We have a week where strange goings-on happen. Firstly, I am sitting at home minding my own business when there is a noise outside. It sounds a bit like a lorry is delivering a mattress or something large in cardboard as it makes a scraping sound. I don’t think anything of it, nor the shout of “Shit!” that comes after. We have primary school aged children on our block who play outside all the time and I assume it comes from one of them. Mr Mason arrives home and immediately asks what is going on? What are the police cars doing outside and why have they blocked the road? We go to take a sneaky peek and see a fire engine and 2 ambulances at the scene. It appears someone has tried, and partially succeeded, in driving a car along the pavement until it becomes wedged by a lamp post and wall. It has scraped down the sides of 3 cars and is now sitting on the pavement. The driver is sitting on a wall and keeps trying to stand up but a policewoman in blue gloves pushes him back down. He does not look too steady on his feet and I wonder if he is drunk. The fact that no-one was killed or injured is incredible as there would normally be children playing out.

While we watch, the traveller family leave their house to go to, possibly, a wedding but certainly something where dressing up would be required. Mrs Traveller is wearing a dayglo orange dress which is cinched in at various places and puffed out at others. Her hair is probably a foot higher than the top of her head and I have never seen a hairpiece like it since the early 1970s. Misses Traveller are dressed in sparkly clothes, complemented by spray tans and more hairpieces. Master Traveller has had his hair wetted down and is wearing a jacket and trousers with a shirt and tie. Mr Traveller is wearing what we assume is his best vest with a smart pair of trousers. They troop out of the house once and then go back in. A few minutes later they troop out again and get into a car which may or may not have been hit by the creative driver. They do not look happy being under the watchful eyes of so many police, even though they have done nothing. The car is bounced partially onto the road by the police. The driver is taken away and the ambulances and fire engine also depart. It is all over quickly.

This morning, I am dozing when I hear screams and cries of agony from the street. I get out to look and see a man with a backpack and a woman who is clearly shocked. She is cryiing and shaking and she has been making the noise. I do not recognise them. They get into a car with the woman in the driver’s seat but she is still visibly shaking and crying. After a minute, the man with the backpack, who is clearly angry, hits the dashboard and they both get out and swap seats. I don’t hear what he is saying but he has the manner of someone who is furious. He starts the car and they drive off. I feel very disturbed by this. I don’t recognise the people  but then we don’t know all our neighbours. The woman was so clearly shocked and distressed my mind whirrs as it thinks of possible causes for this. It probably says more about me than them but I can’t get the possibility of violence out of my head. Eventually I doze off again to be woken twice by Mr Mason who asks if I am calling him. No I am not. “You are making a noise” he says. There is no answer to that.

Still Life

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The effects of chemotherapy are making themselves felt. Imagine the inside of your mouth was incredibly sore with actual ulcers on your tongue and that the sides of your mouth had cracked and split. Yep, that’s me. The real downside of this is that it will happen every 3 weeks as I get my infusions of chemotherapy. I am actually blaming Docetaxel for this side effect as it is usually the culprit. I have had a sore mouth before but have used Blistex to heal it up. Could I find any in the house today? No. Cue a trip to the local shops to buy some but with a stop enroute with our friend Ms Frumin who is taking us to lunch at a new Lebanese restaurant.

West Ealing may be full of charity and pound shops but it is also sprouting lots of new food shops, cafes and restaurants. The Lebanese restaurant is the find of our friends, Mr and Mrs Carter, who discovered it whilst looking for the cafe I normally haunt. We sit down and order Ayran, a Lebanese yoghurt drink with mint in it. It is quite salty but very refreshing. Despite being told the dishes are large, we order 2 side dishes each plus a salad to share and then stuff our faces with some truly sensational food. The saltiness stings my mouth a little but it is worth it for the fantastic flavours. On our way home, we stop at our favourite food shop which sends Ms Frumin into paroxysms of delight as she discovers, amongst other things, bright pink pickled turnips which she buys to brighten up a salad for the weekend. Afterwards we go home and sift through potential houses to buy and she chooses those she thinks are most suitable. It’s a good day, although the stuff I buy for my mouth doesn’t seem to be working so far.

At the moment we’re in a strange place. We just don’t know whether the cancer is controllable or not but after each session, the pain in my osophaegus has increased and then faded away completely so I am taking that as a good sign. There will be no scans until we have maybe 4 sessions under our belt so there might be some change to see. The idea of staying on Docetaxel permanently is not appealing. It was the worst of drugs when I had my previous cocktails and it certainly seems to be doing it’s best/worst with me at the moment. My weeks seem to be like this. I have chemotherapy on a Thursday, feel a bit queasy on Friday, semi-able to do things on Saturday and then slump for several days when even getting out of bed is difficult. I am getting pain in my legs and feet so sometimes being in bed is just the most comfortable thing although it’s dreadfully tedious. By Wednesday, I can stagger out (with supervision) and the rest of the week will continue like this until maybe next week when I will be allowed out on my own. By the weekend before my next chemo is due I will feel reasonably OK although still tired and then, of course, the whole thing starts again. I suspect I am not a good patient, getting bored and whining when I can’t think of anything to do but too tired to do anything really interesting.

Next week, however, there is going to be a brilliant session at the Maggie Centre in London. My friend, Ms Hutchison, is bringing a lot of wooden ‘woobs’ to the centre along with paints and brushes so we can decorate them for an exhibition she is planning. You may remember I had a cast made of my chest last year which was then decorated by a brilliant artist called Skev. Ms Hutchison was the brainchild behind this and she is now moving on to another exhibition which will promote her charity, Hello Beautiful. If you get the chance, do go and look at her website and if you are in the area of Maggie’s on Wednesday 13th, pop into the centre and get creative.

Meanwhile, life carries on with its gentle flow. Mr Mason is busy painting anything that moves and I am busy putting my hands on freshly painted surfaces. It keeps us amused. We are not planning anything beyond a visit to see Mr and Mrs Hurley in a couple of weeks and a couple of nights in a Lincolnshire hotel in September. Thank you to everyone who phones, texts and emails. I am sorry that I don’t reply to each of them but it’s very good to hear from you. My voice is still not great and I’m not always up to speaking a lot so please don’t be offended if I turn down your offers to visit or go out somewhere. My energy is really limited and talking just sends my voice away completely. It’s a pain. Even Dog won’t listen to my commands. Surprisingly I am still managing to work a little. Quite a few offers come in during the Summer and my clients are good enough to know they must shell out for a taxi in order to have the pleasure of my company so it seems churlish to turn them down. Tomorrow I am going for a meeting at Guy’s Hospital with a team who are busy creating a hand-held PET scanner so that live pathology can be done in an operating theatre for women who have breast cancer. The scanner will be able to scan the wound site, too, to see if there are any rogue cells left behind. It is an amazing invention, still being tested and I am really pleased to be asked to be involved in the planning and monitoring of the trial. And it’s really good to feel I am still useful, even in my depleted state.