Monthly Archives: May 2015

Cutting it fine

by

OK, so Virgil has crashed and burned as an oncologist in my opinion. Why? Firstly there is the suggestion that he sees me only 4 times a year. Hmmm. For someone with secondary cancer, pleural effusion and a tendency to be unstable on chemotherapy, this seems an extremely bad idea. We have maybe a total of 20 minutes talking together yet he thinks this is enough to know me and my cancer. It’s not as though cancer follows one path (and, pardon me, but my cancer is the rare and aggressive Inflammatory Breast Cancer. You don’t see many of us around). Everyone is different and since the reocurrence, my condition has been complicated. So I say my bit about usually being seen every 3 weeks and he agrees to this. Except he doesn’t really. A week before I would be due to see him, I ring his secretary to say I have not had an appointment. That’s because none has been made. OK, this could be an admin error but he should be looking out for things like this. I know my previous oncologist would have. The first appointment I can have is on 12th June, a month since our last meeting. Since then there have been an echocardiogram, blood tests, including tumour markers, and a CT scan. Have I had a since result from any of these? No, of course not. I asked for the result of my echo at the time but was told it is not policy to tell patients “as they might not understand”. Surely if you ask for the ejection fraction it shows a least a smattering of knowledge? I phone my GP to see if he has the results. No. If the ejection fraction is too low, I will not be able to have chemotherapy on Tuesday. I phone Virgil’s secretary. Not only is it the usual “we don’t give results over the phone” (which I accept and would like to point out that she has been very helpful so far) but Virgil hasn’t even looked at the results so there is no report to send to my GP. Cutting it close, Virgil, cutting it close. So of course, there are no blood test results, no tumour marker results and no CT scan results.

For anyone who has to have regular tests, the waiting around afterwards for the results can be excrutiating. It highlights here the dissonance between Virgil and I and his apparent lack of understanding of what it is like to be a patient. Especially a patient with a terminal illness who is really, really keen on keeping everything on track so she can hang on as long as possible. It makes me very angry and upset. Yes, he’s probably studied hard somewhere and it may have been a struggle but what use is that without a rapport with your patient? The patient/doctor relationship is so important and perhaps what’s worse than his lack of empathy with me is that I don’t have any faith in him. I don’t have any faith that he would go all out to find a new treatment, research options or really look after me. I feel like something on a conveyor belt, being churned out and if I’m not the same as the person before or after then that’s my hard luck. For God’s sake, this is my life we are talking about, not a minor illness. Having optimism, faith and a positive outlook is crucial in making my time as good as it can be. It’s all about quality of life.With a lot of pain, fatigue and just the reality that secondary cancer brings, it’s normal for me to be beating off depression or just general low mood. I feel I’ve done my bit with changing work and moving home. What I really need is a specialist I can rely on, who can understand this and see me as a complicated but interesting puzzle which he or she wants to solve or at least outwit the dreaded disease for as long as possible. I just don’t have that feeling with Virgil.

So, the second opinion is on the horizon and I am really hoping this doctor will have a better attitude. If it seems he is constrained by his Health Authority (which may also be a reason for Virgil’s apparent failures), then I will be looking further afield. I have my sights set on Addenbrooke’s or Sheffield and I’d be really happy to hear any recommendations from anyone who is/has been treated at either hospital.

Narnia is in my en-suite

by

I am so glad I am in the habit of keeping a diary of appointments etc. Whenever I sit down to write, the first thing I have to do is go back and look to see what I’ve been doing over the last few weeks. Otherwise it would just be a blog about what I have done in the last few hours and even that might be shaky. It’s a week with few appointments – just 4 by my count. It starts off with a visit to my local GP to ask about a second opinion from another oncologist. For some reason, I feel a little bad about this, even though it is obviously vital I have the right person looking after me. The more I think about Virgil, the more I know I wanted him to be the right person. My previous oncologist was already thinking ahead when she heard of clinical trials and keeping me in mind for things whereas I feel a little like something on a conveyor belt with him. See patient – tick! Arrange treatment – tick! See patient again in 3 months – tick! There is nothing in between. Not once does he check my lungs to hear how they are performing. It’s just not good enough. So my GP who seems genuinely nice agrees immediately to refer me and knows of the oncologist I am asking for. He thinks it’s perfectly reasonable, too, which helps. We then have to rush home in time for a visit from the community nurse, Wendy. She is also very nice and takes lots of notes and is very keen to help in any way she can. I say I don’t think I need her services at present but it’s good to know there are people just a phone call away who know about my situation and are happy to offer advice or come out to see me. And, surprisingly, it’s a 7 days a week service which I am very impressed by. She offers at one point to check my pressure points – areas where I may develop sores from lying or sitting in one position for too long. Obviously she just wants to see my bum. I deny her this treat but tease her with “maybe another time”. Honestly, the lengths people go to.

Tuesday is my birthday and we start with a verse of Happy Birthday sung by Mr Mason snr and, for once, he doesn’t do it in a silly way and for some reason I am very touched. I get a lovely cameo brooch/pendant from Mr and Mrs Safaie, a ring from Mr Mason and some incredibly luminous orchids from Mr Mason jnr. The card with it reads “Mother, Happy Birthday, Son”. As ever, he is economical with words. I also have a surprising present of money from my Dad. I can’t remember the last time I received a present of any kind from him so I am both startled and touched. I have an echo first thing and am miffed because the technician will not tell me my ejection fraction. Now, if I know the term ‘ejection fraction’, I probably have some understanding of what it means but she will not budge, even when I tell her it’s my birthday. Everywhere does something a little differently as I was told immediately what the result was at my previous hospital. I am trying very hard not to keep saying “When I was in London” or “at my previous GP/hospital” as I imagine it is very galling and I don’t want to come over as a snotty Southerner. After this, we head off to some Antique shops at Hemswell Cliff and browse around to our heart’s content. The day is stormy and cool, perfect for leaving the dogs in the boot together. They are starting to settle in a little more although Archie can be a bit of a bully and Lark is wary of him at times. She is sensible, though, and he is not a mean dog so they will be fine together. Mr Mason thinks she has settled in so well he decides not to wake her to put her in her crate overnight. On coming downstairs, we discover she has removed the bottom 12″ of our vertical blinds on one side of the sitting room window, presumably so she can see out better.IMG_20150521_102502095_HDR

On our way home, we see the Red Arrows have been alerted to my birthday and are doing an impressive display with 2 teams. I try to capture some of it on my phone through the car windscreen but the photos don’t come out well, as you can see. Still, it is the thought that counts. We drive home listening to the bumper CD of Novelty Songs given to us by Mr Neary. It’s a good day.

IMG_20150519_143352067IMG_20150519_113652217 IMG_20150519_113726525 IMG_20150520_134356309_HDR

And so, finally, to Narnia. For some reason, the psychotic cat has always had a thing about bathrooms. I remember years ago a friend telling me that one of her 15 cats, Florence, used to dash into the bathroom the moment the door was open to do a wee. I thought it was hilarious at the time but think it less amusing when the psychotic cat shows similar tendencies. Since moving, as you know, she has had something of a personality transplant and has eschewed the use of a tray but has gone freestyle, using the garden like a normal cat. But she still has not shaken her love of bathrooms. Our main bathroom is enormous with a double shower and huge rolltop bath and she quite likes it but not as much as the en-suite. If I get up in the night, she jumps off the bed to accompany me, desperate to get in there and then, once there, she looks a little disappointed and can’t wait to get out again. But she does this repeatedly. Whatever she expects to be on the other side of the door just isn’t and she is either an eternal optimist or forgetful. I think it’s something like Narnia and she just has to wait for the right time to come around when she will be swept off into a cat paradise, whatever that might mean to her. And her enthusiasm has started to rub off on me a little. Perhaps one day I’ll open it and Narnia really will be in my en-suite.

IMG_20150511_212738703

Up with the Lark

by

We have Mr Neary visiting this week. We have not seen each other for ages but, as with all good friends, it doesn’t matter a bit and we are into deep conversation before we have even left the station car park. There is so much to catch up on but we are really pleased with his reaction to our new place. Firstly he is blown away by the countryside. It is looking pretty at the moment with the fields of rape giving an acid yellow slash through the many shades of green and brown. Trees are in blossom and it’s looking its best. We go to a pub for lunch and when we are sitting down with drinks, he asks “Why did you choose here?” “This pub?” Mr Mason replies. “Well, not really. I meant why this part of the country?” It’s quite hard to give a coherent explanation so I tell him about our trips to Lincolnshire and how we loved the look of it, the coastline, of how proud the county is of its food and that we loved the Georgian towns, no motorways and how relaxing we found it. We had planned to move before I was initially diagnosed with cancer but then postponed it. I’ve probably told you all this but you know how bad my memory is. We were just about to set the ball rolling again when I was diagnosed with secondary cancer and, despite incredulation on the part of my medical team, we made the decision to go. If not now, when? That has been our motto to get us through the worst of the moving experiences. The portions of food in the pub are enormous, so much so that half of mine comes home in a doggy bag for Dog. Mr Neary is then enchanted by the house and its situation. We take Dog out with us for a walk round the castle, a walk I can manage because it is just over the road. Mr Neary feels quite emotional when we go in. He thinks it’s a feeling of pride. We are still so full from lunch that we can’t manage the steak pie we have planned for dinner so we just have cheese on toast and a piece of Arctic Roll each, a request from our guest. Actually, it’s not real Arctic Roll but a supermarket version. We coudn’t find the original. If you are wondering why I put Mr Neary’s name with links, it’s because he is an extraordinary person who has fought an incredible battle and won, all for love. It has cost him a lot, and I don’t mean financially, but I am so proud of what he has achieved. In the morning he asks if he’s allowed to come again and he goes off to the train station feeling refreshed but having missed an opportunity to go on the Victoria Derbyshire show to talk about human rights.

This week I have my first treatment locally. The set-up is very different and the chemo suite is much smaller than at Charing Cross. Only patients are allowed in so Mr Mason has to wait outside, entertaining himself by reading Facebook and chatting to other people waiting. Firstly I am weighed and my height taken by a very stern nurse called Marta. She also does observations and even takes my pulse so I feel thoroughly taken care of. She suggests I take a chair facing the window as they have some ducks who have sneaked in and have a brood of ducklings running around after them. “The thing is”, she says, “they are all brown except one which is yellow. So what does this mean? Were there 2 fathers?” I don’t know enough about duck reproduction but I like the way she raises her eyebrow as she says it. The ducklings make an appearance which makes up for the loud and irritating conversation being held by a woman in a purple wig and the man sitting next to me. I don’t mind people wearing purple wigs and might even have considered one myself at some point but as soon as I see and hear her, I know she is going to dominate conversation which she does, with ill-observed comments and a lot of hot air. We hear how MacDonald’s will poison you if you eat their food, you can’t have a takeaway and not to buy bread from a market because everyone squeezes the loaves so they’re full of germs. I point out that she can always check the environmental health rating for any premise that sells food by looking online but I get a laser look that says “Keep out of my monologue” so I do. The ducklings are much cuter. Apparently London is a horrible place and if you dropped a bomb on it,only 3 English people would be killed and the rest would be foreign. This is apparently a good thing and no-one would miss the place. She engages in a bit of a double act with the man sitting next to me as they bang on about London and its faults. I tune out. As she leaves, she gets to ring a bell to signify that it is her last treatment so I allow her some slack as she is probably on a high from that. The man sitting next to me then turns to me for conversation. I tell him we are from London and he doesn’t go through his London routine but talks a lot about Yorkshire and how it’s the best place in the world. When he finds out my Dad is from Yorkshire, he says “Well, at least you’re half Yorkshire!” which I presume is a good thing in his world. The nurses in the chemo suite are lovely and have time to sit and chat a bit which is nice. We get fed and watered while we have treatment and I save half my sandwich for Mr Mason who I know will be starving by the time we leave. Indeed he is and practically inhales them.

The following day I get a phone call from my previous oncologist’s secretary inquiring how I am getting on with the new oncologist. I tell her about a couple of things I am not happy about and she suggests ringing Virgil’s secretary and asking who the most experienced breast cancer specialist they have is. I can then ask to be referred to him/her. I am quite touched that they have thought of me and made the effort to see that I am  happy and well looked after. There is also another thread running through the conversation which I am not able to articulate yet but I can tell they are not content. She agrees she will not take me off Charing Cross’ books until I have spoken to her to confirm things really are OK. I make the call and the secretary is very helpful, telling me Virgil is a locum replacing a consultant who had been there for many years. She says there isn’t a senior consultant at the moment but that there are 2 at Lincoln General Hospital and tells me how to get a referral via my GP. I look them up and find one of them I have seen when I had a high temperature and the other is a specialist in breast and lung cancer. He sounds like he might be right up my street so I make an appointment with my GP to get the new referral. I ring the Charing Cross secretary back and explain what is happening and she fills me in a little more, saying they sent my complete file so that it would be there before my first clinic appointment and so they were puzzled by all the requests Virgil had made for information. There were obviously other things she wasn’t happy about but didn’t divulge which is fine.They are keeping an eye on me which is brilliant. She thinks I should have an appointment within 2 weeks. I have an appointment for my echo which will be on my birthday next week. What a lovely treat!

The most exciting thing we do this week apart from serving Mr Neary generic Arctic Roll is go and collect the new dog. We choose Lark, the brindle bitch with the white V on her face. She has never been away from her mum or sisters before so she is very shy and uncertain. We leave Dog at home so there will be no problem with 2 dogs in the car and on the way home stop at the pet shop to buy a new dog brush. Unsurprisingly, we can’t find Dog’s which is a particularly good rubber one. So many are metal and too harsh for his fine coat. We get her out of the car and only a few steps away realise it’s a mistake. She looks extremely stressed and twists in the collar so we bundle her back in to relax in the boot. Although she is house-trained, she has been in kennels with her sisters all day so she’s not used to being in a house a lot of the time and she has a couple of accidents. Mr Mason is aghast at the amount she excretes and brings me into the garden to marvel at it. It’s true, it’s huge – as big as her head. Where does it all come from? Dog tolerates her although he moves himself upstairs to the bed in my study. She sleeps in her crate at night and in Dog’s sitting room bed during the day and he doesn’t complain about that – he just takes himself off. It will take them a while to settle in together but so far it’s all going well. Whippets most often carry their tail between their legs, unlike other dogs, but still wag them – it’s just under their belly they do it. I come downstairs on Friday morning and get a nice waggy tail so that’s a good sign she’s attaching herself to us. We are having to go back to basics with Ms Dog with toilet training. recall and sitting etc. I will leave the hand shaking and roll-over to Mrs Safaie and Mr Mason jnr to teach her. I’m sure she’ll be more than happy to oblige.

Photos courtesy of Sue Phillips, Ladygrove Lark’s breeder.

Lark 2 Lark 1 Lark 3 Lark 4

Increasing pack size

by

Each week seems to get busier and busier. Instead of lounging in the garden, we have appointments, workmen and all sorts of admin to catch up with as well as continuing to unpack boxes. We have some new bookcases arrive which means emptying of more boxes which is good but also rather tiresome. It’s a job Mr Mason has taken on and is doing it well. The roof is finally finished. Alex and Dale come over to put the chimney pots on with the reknowned lime mortar. The weather is fickle and goes from sunny to windy with a hint of rain and they are concerned about the lime mortar setting well. They sit in the van for a while to see what the weather will do and then announce it will be OK, they have actually finished. There is a lot of chat as we thank them and they thank us for the work. Off they go in the van and half an hour later a huge storm crashes overhead with thunder, lightning and hale – the whole works. Suddenly their little white van re-appears and they rush up ladders with a tarpaulin while the rain lashes down. They were a few miles away and were worried that the storm would damage the lime mortar so, even though they had finished, back they came. They come down the ladders wet but smiling. The lime mortar has set sufficiently so the rain will not be a problem but I am rather blown away by their attitude. Having finished a job, they worry about the storm sufficiently to come back and make sure everything is OK. It’s an excellent service and not one I can imagine happening in many places. Another tick for Lincolnshire attitude.

I am still investigating the support network for cancer patients in the area. In London, it was pretty straightforward. There was the wonderful Maggie Centre at Charing Cross and I had a dedicated Macmillan secondary cancer nurse. There was also the Mulberry Centre at the West Middlesex Hospital where I could have massages or reflexology. The Mulberry Centre was a bit strange. The treatments were fine but it wasn’t the sort of place you could go in and just relax. The volunteers who staffed it were very eager and wanted to know why you were there and to engage you in conversation. I never found it a good place to go for anything except reflexology or massage. One member of staff got rather obsessed with Dog and would insist on coming to see him if he was in the car. He had to be brought out so she could shriek over him. What is it with people who shriek at dogs? They don’t like it. Here, there isn’t an obvious place to go so I reluctantly get in touch with the local Macmillan nurse who, as you will know, turns out to be marvellous. She is really intent on getting me hooked up with everyone so when I need something, I will know who to go to. I get a call from the local hospice who make me an appointment so I can go and be assessed. They provide all kinds of complementary therapies including breathing classes (which I think might be really useful), a choir and Reiki. I sit down to fill in the form I am sent and immediately it sends me into a dark place. So many questions I don’t want to answer about how I feel physically, emotionally and spiritually. Half way through it, I give up and go and help Mr Mason with the books, so depressing does it feel.

In fact, while I think of it, there has been a very black streak running through the whole week. I have decided to do lots of admin which means I can be productive whilst sitting down. Some of this is just letting people know of our new address and some of it is looking at finances and pensions. It’s the pension bit that I find hard. I have to make sure Mr Mason is nominated to receive my pension in the event of my death but then there are the new rules which came in last year meaning I can take some or all of my pension early. This means there are lots of conversations and emails discussing my health and forthcoming death, whenever that might be. I am desperate that Mr Mason is left in a good position financially and that there is nothing messy or complicated for him to be dealing with when the time comes. I hate thinking about it and there are quite a few tears. Luckily there are boxes of tissues in just about every room in the house so I am well prepared. I decide to engage a financial adviser who has been recommended by Mrs Hurley and think I will hand the whole kit and caboodle over to her (the adviser, not Mrs Hurley) and she can help me find my way through what feels like a mine field. I eventually get back to the hospice form and complete it, shoving it back in the envelope and deciding not to look at it again. I also get a call from a nice man called Aaron who runs fitness classes and regimes for people with cancer. He even sounds fit (in the literal sense) over the phone and he will come and see me, assess me and then become my personal trainer,  helping me to do excercise which will benefit me, taking into account my health and maybe link me up with some groups. It sounds good. The community nurse also calls and asks if she can come over to introduce herself and explain what she does and what she can offer. Another strand in my support network. Very different to London but I am starting to feel more secure.

On Friday we go to see Virgil and he is still rather stressed. Maybe this is his style in which case I will have to hypnotise him to make him more laid back. He has had more information but still not really enough and the date I was given for an echo was not one I could make. He sighs quite a lot and then says aloud everything he is entering into the computer system. We drag out of him that I can have chemo at Pilgrim Hospital instead of going to Charing Cross which is actually quite a relief. I love seeing the people at Charing Cross and at Maggie’s but it’s so tiring going there and back in one day. He says he will see me in 3 months at which I raise my eyebrows and explain at Charing Cross I am seen by the oncologist every 3 weeks. He thinks again and then agrees he will also do this. I also query with Virgil why the stickers on my appointment slips still have my old address on. He waves it away, saying it’s fine. When I get home I find a letter redirected from our old address asking me to attend the appointment I have just been to. I also have a letter from Charing Cross addressed to me at our new address with a copy of my oncologist’s letter.I start to wonder how much experience he actually has but know I have the safety net of my previous oncologist to fall back on. He can’t get through to the chemotherapy suite on the phone so walks us round there – Mr Mason later says how impressed he was by my turn of speed – to find out what time my appointment will be. Apparently, although there was a slot on Wednesday available earlier, it has now gone. They can give me an appointment on Tuesday. I know my previous oncologist would have waited until the following week but I feel I have said enough about what my previous oncologist would have done so say it’s fine. The lady on the desk already knows who I am because she has just prepared a file for me and a pharmacist arrives and says “Oh, is this the lady on Kadcyla?” I am the only person in the hospital to be treated with this drug so I cause a bit of a stir. The staff are incredibly friendly and give us a card to put on our windscreen so we will not have to pay any parking charges when we visit the hospital. I just have to make an appointment at the GP’s to have my blood taken and we are all set.

I also have a very exciting appointment to attend. Before we got Dog, I had decided I would like a whippet. Then we saw Dog and were smitten so took him. He is a sighthound, like whippets, but distinctly bigger with his Saluki parentage. We decide before we move that we will get another dog. Mr Mason jnr always says to Dog “We’re going to get a better dog” which is a mean thing to say. We would normally get a dog from a rescue but with the way things are, we decide to buy one from a breeder. I research breeders carefully through the Kennel Club and find one in Louth who has been recently inspected and breeds whippets and deerhounds. I email to see if she has any whippet pups available and get a response saying they are expecting a litter later in the summer but have 2 9-month old puppies if we are interested in a slightly older dog. To me, this sounds perfect. The dogs will have been house-trained and have basic training so we make an appointment and go over to see them. First we catch sight of the deerhounds who are magnificent and have won prizes at Crufts etc. They are huge and simply stunning. Both the whippets are gorgeous and have different temperaments. One is cheeky and ready to jump into trouble at the first opportunity whilst the other is quieter and more shy. Dog pretends to ignore them while we walk about in their run. He wees on everything we can see and the cheeky one, Leia, is desperate to smell his bottom, so much so that I fear she will get a wet head. The other dog, Lark, is more reticent and sticks with her sister for a bit. After a while, they all calm down and do a bit of chasing around, a bit of woofing and a lot more sniffing. Dog seems quite happy with them and we then have a difficult decision to make. One dog is a brindle and the other is white with brown spots on. The breeder points out which is better from a showing point of view although she knows we are not going to show the dog. It is very tricky to decide. But I’m all blogged out so I’ll let you decide which one you would take with a sneak preview. Photos courtesy of their breeder, Sue.

 

Whippet pupsWhippet pups 2

Thunderbirds are go!

by

This week I hear a terrible story about Alex, our toothless roofer, and feel rather bad about myself for making jokes about him, albeit affectionately. Apparently a few years ago he was a taxi driver in another city and took a fare of a group of  young men. When they arrived at their destination, they ran off without paying and he gave chase. He caught up with them and they beat him senseless. stamping on his head and knocking many of his teeth out. He was so traumatised he couldn’t recognise the men the police paraded in front of him and didn’t even know if the man who was with him when the police arrived was helping him or was one of the attackers. Subsequently, on huge doses of pain killers, he became quite paranoid and left the city because he couldn’t stand the way he was feeling. He has sorted himself out to a large extent but I’m pretty sure he has PTSD by the way he behaves. He seems to have done a great job on the roof to the extent that he is obsessive about details eg “That pantile on the garage is set at a wrong angle and is driving me mad. Do you mind if I get up there and put it right?” So, I apologise profusely.

We also have a big date with the oncologist. The appointment letter says to go to the ante-natal reception and, sure enough, that’s where the clinic is being held. We sit amongst posters of mother and baby groups, how to wean your baby and loads of other baby-related paraphernalia and I think it is more than a little insensitive for the younger women there and it makes me think of my lovely friend, Ms De Roeck, who has had so much stress and heartache over this very subject. Chemotherapy can put you into an immediate early menopause so for women who are diagnosed young, this can be a double whammy. Depending on your hormone status, you may also need to have your ovaries removed. Putting women in an ante-natal clinic just seems stupid although I suspect it’s about using available space. It’s still stupid and insensitive, though. After the traditional wait, a tall Greek man calls me in, sits me down and shows me his badge with his name on. With a name like Virgil he is either Greek or a Thunderbird. After a bit of internet stalking, I discover he is probably Romanian. He says “What can I do for you?” and seems not to know why we are there. I explain about moving and wanting to change my care to Pilgrim Hospital and he shows me the file and letters he has. There are half a dozen pieces of paper in a folder and that seems to be about it. He has a letter from my GP, a list of my medication and an old letter from my oncologist. Clearly it’s going to be a challenge to sort everything out and at first he seems quite stressed and angry. Luckily I have taken my red book with me (the one that records every dose of chemotherapy you have including your latest blood tests) and I can fill him in on dates when I was taking one chemotherapy and dates when I had a break because I was too ill. He starts to relax when he realises I know quite a lot of detail about my medical history and as he works out a plan in his head. My next chemo session is scheduled for 13th May together with an echocardiogram (Herceptin and Kadcyla can both damage your heart so I need regular checks to see it’s functioning well) and he starts to think he may be able to give me chemotherapy at Pilgrim instead of travelling down to Charing Cross (“unless you want to” – in which case I’m not sure why we would be there). The only thing he says which disturbs me is “you cannot tolerate chemotherapy” and he lists those which have given me unacceptable side-effects. But Kadclya is surely a chemotherapy and there are others I haven’t tried. For a moment it makes me feel that the game is up – when Kadcyla fails me, it will all be over. But we’re not there yet and I would fight tooth and fragile nail to be prescribed something else. Once he calms down, I think I might like him. I need someone who will listen to me and think around the problem. He reminds me a bit of Dr Bossy and I wonder if he likes cakes as much. By the end of the meeting he has grabbed me by the shoulders (in an affectionate way – I still have my stick with me and, although he’s much bigger than me, I think I could take him) and suggested we meet in a week by which time he might have had more information. He thinks on the basis of what I have told him he would sign the prescription for me which sounds good.

We leave the hospital and immediately I feel as though I can’t breathe. I am trying to gulp in huge amounts of air and failing to stop so I concentrate on breathing out. It’s like a panic attack and I wonder how much worry has been sloshing around in my subconscious about this meeting. Eventually I get my breathing and crying under control anf for a special treat, Mr Mason takes me to Matalan to buy a storage unit for the bathroom. He knows how to show a girl a good time. I feel things are starting to come together both medically and with the house. Over the weekend I spend a huge amount on bookcases which will help sort out the other, bigger, sitting room. Alex should finish his work this week and in a way, I’ll be sorry to see him go. His stories are amazing and, although he likes to repeat them endlessly, I now feel I have a little more tolerance knowing something of his background. And I’m secretly hoping that Virgil is also a part-time Thunderbird.