Tag Archives: secondary breast cancer

Lark’s Diary XI

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Well, I’ve just found out it’s going to be Christmas although I don’t know what it’s about except lots of extra delivery men come to the door and leave boxes lying all over the place. Some packets are smaller and mum puts them in a bigger box in her office so it’s quite easy to steal and run away with. Then she gets a bit cross and puts on her cross voice which is one up from her disappointed voice but nowhere near her “I can’t believe you did that!” voice. That voice was used when I ate her new glasses. She has two pairs but I like one better and the chewy plastic arms have just the right consistency so when she left them on her bedside table when she went to have a shower, well, it was irresisible. The cats talk to us sometimes but we can’t understand exactly what they are saying enough to answer but we get their drift. 1. Don’t sniff a cat’s bottom (unless its asleep) 2. Rub your head on the side of the cat’s face if it’s feeling in a good mood. 3. If it hisses, back away politely.

We also have language which is more than just some old woof, you know. Whippets have a good range of language and my repertoire of moaning, sighing and groaning is extensive. Mum doesn’t understand all of it, of course, but she tries.

With all the parcels arriving, mum has invented a new game which I like. She finds something sticky and then sticks it on my forehead and I have to spin round in circles and rub my paws on my head until I get it off. It’s a good game to play indoors because we have to do lots of indoors things lately although we did have a good run in the woods yesterday and got really muddy. It was great fun. Mum and Mark are putting a new bed together in the annexe today and mum is also trying to wrap presents and sleep at the same time. Mark’s mum and dad are coming for Christmas and are Very Old so they are sleeping in the annexe so I can’t trip them on the stairs and kill them. Our other visitors are all quite young, at least, no older than mum.

We are still struggling with my claws. Again, some nosey woman said she thought my claws were a bit long and when we went home mum got the cutters out so she could trim a few. The thing is, it always feels like she is going to cut my paws off and I have dreams where she cuts them off and them sews them on her own feet so she can run really fast. Of course, she doesn’t cut my paws off and gives me Strictly Forbidden chocolate buttons while she does it. It doesn’t make it any better, though.

So, Christmas. There are lots of good food things coming into the house with 2 sorts of meat, smoked salmon and smoked eel, lots of very stinky cheese and way more than mum, Mark and his parents can eat so either the rest is for Archie and me or there are more people coming to expand the pack. I expect it’s the latter unless it’s the Christmas donkey who had the baby or the fat man dressed in red who seems very popular at the moment. I am hoping it’s Ollie and Fran with Becky and Rouzbeh because they play with us and run around. But even if it is the fat red man and the donkey with the baby, we’ll have a good time

So I hope you all have a good Christmas with plenty of stinky cheese and a big pack around you. If you get presents, I hope you appreciate them and the final words of wisdom from my mum is “Don’t give dogs sprouts”. I don’t know why; they’re quite delicious. And if they are worried about the fall out, I think this big black animal is far worse than Archie and me.

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There’s a hole in my bucket list

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My keys have gone missing. We are quite relaxed with keys, Mr Mason being unable to find his on a regular basis, so when he can’t find his, I give him mine and then he forgets he has my keys, despite the fact they have a distinctive key ring from San Marco in Venice. My keys are not used that much, though, and are most often found in my bag as Mr Mason usually does the locking and unlocking. Then comes the day he cannot find his keys and asks for mine. They are not in my bag – not in any bag I’ve used in the last 6 months. They are not in jacket pockets or pockets of jeans. They have just vaporised. Mr Mason ploughs on, looking through coats I’ve not worn since last winter and gamely looking at mutual backpacks we took somewhere a long time ago. They are not to be found. We do have spare keys, we discover, sitting in a little pot the vendors left. When Mr Mason goes out, if I am not in the sitting room, kitchen or garden, I like to be locked in because I can’t necessarily hear anyone coming to the back door and it is rather a long way away. This used to alarm Mr Mason before I lost my keys but now he is doubly worried that some catastrophe will happen and I’ll be locked in with no way out. I point out that I can get out of the front door (bolted shut) or the downstairs toilet which has a door into the garden. He still worries and we have the same conversation each time.

Today it’s the car service in Boston. Put a search in Google for anything in Boston without specifying UK and you get all the results from Boston, Mass. If I have time, it’s quite interesting to compare how many fishmongers there are over there and how they ever get their hands on a nice fillet of smoked eel, I will never know. No fish smokeries at all. Talking to a visiting friend at the weekend, I mentioned that I would like to go to Boston as one of my final trips and for just a split second, I could see he though I meant Boston, Lincs. Philip, our friend, is the dogs’ new best friend. For a gift he bought them a pack of finest Lincolnshire sausages, all to themselves. Dogs really do go crazy for a sausage; it’s not a myth. He also bought us humans some lovely presents, including a mug with a giraffe as the handle to perpetuate the online debate that if a giraffe drank a cup of coffee, would it be cold by the time it got down its neck. What do you think? Yes, we do have too much time on our hands sometimes.

I’ve been thinking a bit about the old bucket list idea. I find it hard to get up each morning and spend the day appreciating every moment. Another of my online friends died this week. She had been to the USA with her family just having a good time when she fell ill and died within 2 weeks. That’s the sort of thing that really scares me. I picture a gradual decline because, I suppose, it would still allow me some modicum of control but of course, it’s not like that for all of us. Clearly going from being well enough to travel to the USA to dying is far too fast for my liking and for those who knew and loved her, I extend my deepest sympathies. Incidences like this pull me up short and I then do try to appreciate each day, if not each moment. It’s still hard though, because it does still rain and computers do silly things (never their operators) and you run out of milk or bread or rice. Yes, there was an amazing cluster of dragonflies in the garden this morning (yep, that’s the official collective noun) and the sun is shining and we’re not impoverished or at each other’s throats but there is enormous pressure to love everything and everyone when you know you are terminally ill. Unless you are like a nurse I spoke to when I had had a poor prognosis who recommended I told everyone I didn’t like a) that I didn’t like them and b) why. She thought it should be used as a time for revenge.

So, back to the bucket list idea. I’d like to go to New England. I’d like to see the Northern Lights. These are 2 big trips and I don’t know how many I’d be able to fit in. And I have to be selective. I’d like to spend some time away with my family. Thailand, Norway, South Africa and France are high on my emotional trips because there are people there I love and would like to see more of but I’d also like to discover more places. I don’t want to jump out of a plane or start a new hobby. I’d like to dress differently in clothes I wouldn’t perhaps usually buy. That’s easily done. I’d like to have something published – not so easily done, I suspect. I’d like to be thought of as kind and helpful and hopefully funny but that’s where I slide away from the whole bucket list idea. I don’t think I’m going to get very far with concrete ideas although there is a part of me that would like to have that list – to be that organised and controlling. Because that’s what it all comes back to – control – and that’s the one thing we can’t have. With the diagnosis of secondary cancer, it’s been brought into much sharper focus although we’re all really in the same position. Maybe there’s just a hole in my bucket list.

Lark’s Diary VI

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I have been so busy that I haven’t even had time to write my diary. It’s because I have discovered the bestest thing ever! Children! We have had children visiting and although I didn’t know if I would like them, I think they are brilliant and I would like to see more. First we had the Norwegian children, Ask and Liv and they played and played with me. Then we had Caitlyn and Aiden who were taller and talked to me in English. Now we have just said goodbye to Patrick and Isla who were a little bit smaller than Caitlyn and Aiden but taller than Ask and Liv. I’m not sure if it means they are different breeds of children or if they are just older but they all chased me and ran around and I even got extra treats and helped them finish their meals so I think officially that children are the best thing ever.

Mum took me and Archie to see Dr Bum. He is a man who looks after animals and Mum says he usually starts with putting a thermometer up our bottoms and that’s why he’s called Dr Bum. He looked me over and checked my teeth and said I was a good girl. He looked at Archie, too, and said he was in very good condition but he didn’t use his thermometer which I am glad about. I am not sure what a thermometer is but I don’t want anything put up my bottom. I’m sure Mum wouldn’t let him.

We did have a horrible day when Mum went to hospital. Jan, the cleaner, was looking after us and I didn’t like Mum going out without me so I cried and sang the song of my people. Jan thought I would be happy if I sat in the conservatory with Archie because he was sleeping and not crying so she put me in there while she got on with the cleaning. I thought it would be better if I could see the big gate to see if Mum was coming home yet so I tore the blinds off so I could see out easily. When Jan came back, she said she thought she would have a heart attack, although she didn’t, and she phoned Mum to tell her about the blinds. Then she put me in my crate because she had to leave and by the time Mum came home, I had bent the bars on my crate and pushed the tray out of the bottom. I don’t like it when Mum goes out but she says she can’t always take me with her. I don’t know why. I’d be good, even in a hospital but Mum says they won’t let me in. I could go and cheer up the people seeing the doctor. I don’t know if their doctors are also called Dr Bum but seeing a little dog like me would cheer anyone up, surely.

We also went on a long journey to a place called Chester to see Ruth and Philip. I hadn’t met them before but Archie knows them and likes them. It was a long drive and when we got there, Mark gave us a sausage each. Archie ate his in two bites but I was clever and buried mine in the garden so next time we go there will be a sausage tree! I like burying things in the garden because then I can go and dig them up again only sometimes I can’t remember where I buried them. Real bones are the best thing to bury. Bonio go a big soggy.

We have had lots of visitors lately and Peter brought his dog, Ludo, with him. I didn’t like Ludo. I think he was coming to take my Mum away so I shouted at him a lot and tried to nip him on the bottom. Archie said it wasn’t the way to behave with a guest and put my head in his mouth but I wasn’t keen on Ludo at all. Until he was just about to leave and then I started to think he was OK. Maybe he’ll come back and I’ll like him next time. Archie is a bit of a tell-tale, though. It has been raining a lot and I really don’t like going to the toilet in the rain. I don’t know why Mum takes me out on my lead so we can stand in the rain for 10 minutes when I can just do a quick wee as soon as we get back in the dry. Archie was on his sofa in the conservatory and I had to have a poo so I did one quickly and he barked at me and told me off. Mum heard and came in and said “Oh, Lark!” which she says quite often these days. I think I’m back in the dog house again.

Up with the Lark

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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.

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No phone, no broadband – thanks Sky!

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On 2nd March, knowing we were moving, I got in touch with Sky to arrange phone, broadband and tv services. They sent me mail confirming that the work would be carried out on 13th March. The engineer arrived this afternoon to set up the tv service but was surprised when I mentioned we were also expecting another engineer to set up our phone service.

As we are in a tiny village, the mobile service is intermittent and I cannot rely on that in the event that I need to go to hospital or call a doctor. This is why I planned in advance. Having cancer teaches you that, if nothing else. I managed to call someone at Sky to ask what was happening. The first person put me on hold and then never returned. The second person told me there had been ‘a delay’. Why was I not told this? No sensible response. I explained my circumstances – I have terminal cancer and need to be able to contact relevant services without worrying about not getting a signal. I could have checked online. Oh yes, except that would require broadband – which Sky have not installed. I am now using a dongle which at present is doing the job. Thanks Three – at least  you’re keeping  your end of the bargain. I asked when the line would be fitted. Apparently no-one knows, it’s all a mystery and it’s all shut over the weekend. On Monday they might know more. I will have to phone back…on a mobile that keeps losing signal. She went to check my mobile number at which point we lost signal.

So, for the weekend and who knows how long we have no phone and I cannot reliably know I can access medical services if I need them. I know you’re all going to be fascinated by this saga so I will update the blog (read in 49 countries the last time I looked) when I hear from Sky about how they will rectify this.

UPDATE

Well, as promised, here is Sky’s response: Evening Shelley – when an order is delayed we have a specialist team who work on the order to push it through as quickly as possible – even more so in situations where the phone is a necessity. When we have an update for you we’ll contact you directly. If you wish to discuss the issue further we would advise that you contact us using the number you’ve used previously. Thanks, Kei.

They seem to have ignored the fact that I can’t easily use my mobile and that they have left me stranded without a phone in a situation which makes me very vulnerable – despite my planning ahead, all to avert exactly this situation. And how caring does the response sound? It’s pretty much a standard, poor customer service response. Maybe if they read the blog they would have some idea of just what we’ve been going through for the last 3 years and why a reliable phone is so essential. As promised (and now requested), I’ll keep you posted as to how they choose to deal with their situation.

UPDATE 2

So, Sky’s final response last night goes like this… ‘ If you wish to discuss the issue any further Shelley you are free to discuss it with the team you’ve contacted previously. Thanks, Kei.’

This appears to be Sky washing their hands of any responsibility for the service they offer (and take money for). They know I do not have a reliable mobile signal and I have explained that I got cut off every time I phoned them yesterday because the signal keps dropping out, yet they think this is a reasonable ‘solution’ to my problem. And yes, it’s clearly my problem rather than theirs. So not only do we have no reliable access to healthcare services until they deign to install the phone but we are also out of contact with Mr Mason’s parents. As you might remember, Mr Mason snr celebrated his 90th birthday at the end of February. Let’s hope nothing happens to them, either as we’ll have no way of knowing. Mrs Mason snr did have a TIA 2 weeks ago and that’s also worrying. I hope you don’t think I’m moaning but we really, really need access to a reliable phone service and I feel so disappointed and let down firstly by Sky just not keeping us informed of what was happening but also the very poor customer service response. It’s a shock to say it but Virgin Media at least listened and responded in a human way.

Chin envy

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People all around me have chins. Nice, defined chins and necklines and they have mouths which are normal sized. Oh, and a lot of them have hair. On steroids to help my breathing, my face is swollen like a balloon. I receive a copy of a letter from my consultant to my GP in which she says my face looks ‘Cushingoid’. I look it up and it’s not a pretty description. Steroids choose which bits to inflate and they include my torso and feet which resemble 2 little pig’s trotters. I appear to have lost my ankle bones. So I envy those with neat chins, hair and ankles. This represents an awful lot of the population.

Following the horrendous events of September, I feel much better. I am weak – going up and down stairs is still difficult and getting in and out of the car and the shower requires a lot of concentration – but I actually feel in a really good place emotionally. I have my trusty wheelchair which Mr Mason is in charge of pushing. He is a little on the kamikaze side and I have scars on my shins to prove this. In shops we are a little like Lou and Andy. I still can’t speak loudly and Mr Mason pushes me around while I wave my hands and try to make him stop. I am getting quite adept at moving myself around so when he leaves me in one aisle while he goes off to source something, he returns he finds me gone. What a little minx I am. The chemotherapy, although stopped, is still making itself felt. My skin is starting to detach itself as though I have bad sunburn. My legs are actually sore and I can only wear soft clothing. A few of my nails are also making a break for it, deciding they would like to detach themselves and start a new life elsewhere. They bleed and are sore, needing constant moisturisation. The soles of my feet are numb which makes putting shoes and boots on a bit of a challenge. The palms of my hands are also a little on the numb side but I am assured all these effects will decrease and cease altogether in time. This I look forward to.

On getting home from hospital, I find I have broken a tooth. Dentistry is not compatible with chemotherapy so I am in a hurry to get a crown or something to seal the tooth off. Suddenly, there are lots of things I have to do. My eyes are worse so I think I need a new prescription for glasses. Chemotherapy stiffens the lens which will never recover. When I am tired, I can’t read and even the tv looks blurry. But I have lots of visitors which is lovely. Suddenly I feel more sociable and people turn up for coffee and entertain me for an hour or so. My diary is full of appointments and work which I intend to try and continue with. The ENT consultant is still keen to put a little widget in my neck which will help with my vocal chord paralysis and give me my voice back so I have a pre-op appointment to see if I am fit enough. It is a general anaesthetic so it’s touch and go whether I can have that or not.

I have been very excited about having a henna crown. A friend who is organising the fabulous woobs exhibition says she knows someone who is looking for a model and I am put forward. On Friday I hear they already have someone but ask me to send a photo and a phone number and they will see if they have time to do another on the same day. After I send the photo, I am told they don’t have enough time. Hmmm. Could this be the curse of the steroid Holbein face? I try to persuade myself this is not the case and they do say I am top of the list for the next one they will do for their charity work. I am officially disappointed, though. They are beautiful and I am wondering if I could get one done before the wedding as an alternative to a ‘mother of the bride’ hat (which I am not going to wear anyway). I will have to investigate although the amount of work involved probably means it will be an expensive acquisition. But it might be an antidote to the Holbein Henry VIII look – I can’t imagine Henry ever indulging in such a radical look.

Carpe diem wotsit

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My brain has turned to mush. On a mush scale of 1 to 10, 1 being like a somewhat firm pear, 10 being an explosion in an overripe pear factory, I am about 11 like my Spinal Tap friends. I cannot think properly, make decisions or cross roads. Actually, I do cross roads but with no confidence that I will get to the other side before being hit by something. My senses of distance, time and judgement are all impaired. It is obviously at this point that one would think to change everything and go down a more stressful road. So, yes, we are thinking of moving. The plan had been to move a couple of years ago but that pesky little inflammatory breast cancer got in the way so we postponed. Once I was NED, we thought about it again and, it being a daunting task, went slowly so that by the time we made the decision, that little bugger had got back and in touch and made residence in my lungs. Such a killjoy.

The week is blessed by a visit from Ms Mason from far flung fields. She gamely agrees to come on a house hunting trip with us which involves holding the bag of treats in the back of the car and complaining about the sat nav. The chemo regime I had begun in June seems to be doing a bad job. My lungs are worse and, as you possibly read before, resulted in me being detained after a meeting with the oncologist. There is a tense period while I am discussed at the Multi Disciplinary Team Meeting and, late on a Friday, I am told I can have oral chemotherapy which will start the following Monday. I see Fica, the lovely registrar who explains everything and passes me on to the secondary breast cancer nurse who goes through things in more details. I am adding another 9 tablets a day to my current level and have to take them at the same time each day with roughly the same amount of food in my stomach. Hmmmm. And to manage to take the steroids for my lungs which have their own considerations. I start to add up the ‘essential’ drugs and stop when I get to 29. I cannot cope with the numbers. My mushy brain can’t seize the information and I know I have to also take some every day and others get reduced. I need a whole new drug diary and my head just isn’t up to working the dates out. Yet.

I have been wearing a scarf or hat to cover my lack of hair but while we are away, I decide to dispense with it. We go into a coffee shop for a late lunch and the young man serving clearly thinks I am under supervision of two carers. He smiles widely and shows me two menus on the wall. “This is food” he beams, “and this is for drinks!” He alternates his head, indicating each one. “Food and drink!” He is nothing but polite but clearly thinks I am not capable of deciding and refers visually to Mr and Ms Mason before allowing me an Orange Fanta and a smoked salmon bagel. Throughout our stay he smiles encouragingly at me. I am too weak to protest his happy conclusions.

At this point, you may realise this is all old news. I don’t find the energy to blog because I feel so ill. A wheelchair has been ordered and my chemotherapy has been changed. Sorry, too tired mentally, physically and emotionally to do more but please be assured I am OK, just needing to recover strength as even standing is hard at the moment. Normal service, as always, will be resumed and it will be worth waiting for as Mr Mason helps me take a bath. The bath bit is not too bad but getting me out is another matter. Something to look forward to, I hope.

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.

DSC_0795DSC_0791 Woob011014

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.

Where’s Wally?

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It’s funny how people react when you say “I have cancer again”. It almost sounds as though I have been careless or negligent and have let it back into my life through neglect. Instead of coming in all guns blazing, this one has crept under the radar and has disguised itself as something much more benign. It leads me to wonder what you do say when someone tells you they have incurable cancer? Often “I’m sorry” comes to mind but I find a far greater need to apologise to those around me for having this bloody disease than accepting someone else’s commiserations. It’s hardly on a par with anything else. “I’m sorry you didn’t get the job/your relationship broke down/you lost your wallet/you got burgled”. And yet here I am, a bit breathless and with a husky voice but apart from that appearing perfectly fine. Just staring down from the precipice. A lot of messages I received were not only apologetic but remarkably sweary. Some contained only swear words which I could really relate to.

On Tuesday I have a heart echo at the hospital. It’s a pretty dull sort of test which involves a man leaning across me and pressing an ultrasound device (what on earth is it called?) into my chest quite hard to get pictures of my heart. While he is sorting out images he leaves his arm draped around me in a friendly sort of way and at the end tells me my heart is as good as it was the last time they looked at it which was at the end of my year of Herceptin treatment. One thing going well! He even gives me the report to take to the oncologist tomorrow in case the online version gets lost. After this I trail over to Maggie’s, aware I will be spending a lot of time here again this year. My friend Ms Marsden is waiting for me as we plan to visit Ms Cantini who, as you know, stalks me like crazy. She is actually in isolation (possibly because of bad behaviour). Word of my secondaries has started to get round and a couple of the centre’s workers come up to speak to me. I cannot imagine how difficult their jobs must be. It would be impossible not to become attached to or fond of centre users and yet they must bear their loss time and again. Ms Cantini is in isolation because her neutrophils are a big fat zero. Ms Marsden and I clothe ourselves in gloves and plastic aprons looking more like redundant dinner ladies than anything else and then wade in. Ms Cantini is, understandably, bored by being in hospital so long and also so very tired. I fulfil a promise I made Mr Tozer which is to behave like a cat by rubbing my face on the end of her bed. We saw a video on You Tube which demonstrates how bizarre it would be if people behaved like cats. Ms Cantini is a bit puzzled but goes with the flow as it’s just like a passing show and will soon be gone. We leave her to the delights of hospital luncheon.

Wednesday brings an appointment with the oncologist. It’s a bit of a frustrating meeting as results of the pleural fluid drained off are not available and at present we are playing a game called ‘Hunt the Tumour’. It’s a bit like Where’s Wally only less fun. The oncologist is sure I have secondaries. She thinks they are in the lining of the lung but, like anyone would, she wants evidence of this. She is very apologetic about the lack of results and tells us that if the pleural fluid comes back showing no cancer cells, she will want to do a biopsy. I don’t think to ask many probing questions about this as I don’t think I want to know right now. She tries to phone cytology but the phone service has a voice recognition system so instead of cytology, it offers her psychology. She gives up. Mr Mason and I trundle off to x-ray but the oncologist has forgotten to book it so we go back to oncology and ask one of the nurses to remind her. We sit and wait for a while and then I think “sod it!” I could be in my Maggie’s group instead of waiting there so that’s where we go. Mr Mason settles down with his book and I burst in and possibly ruin a good moment but it’s lovely to be back with all my girls. Afterwards, we go back to x-ray and eventually the authorisation comes through and I am x-rayed. The radiologist looks at me and says “Have I x-rayed you before?” so I know I am becoming a frequent flyer.

So now I just wait to hear results and see where that will take us. Whatever happens, I will be starting chemotherapy on Thursday and Friday of next week. Whatever I do, I can’t shake cancer from my mind. It’s a bit like having a job I don’t like. I can’t act and then be done with it. It slips in and fills all the cracks and I suspect it will be like this for a while. So no point in having my legs waxed or my hair cut or coloured. It will all be gone in a couple of weeks. Unfortunately, the cancer will not