Category Archives: Tangling with cancer

Stories of life AD (after diagnosis)

Come into my brine bath…

by

The last 2 weeks are a bit trying. Mr Mason has been away overnight which means Dog and Lark are my sole responsibilities. They also play up because he is not here. Gavin, the gardener, tells me that because the Alpha male is gone, they are anxious. “But I am Lark’s favourite” I say. “Yes,” he says, “you can have an Alpha bitch…” and then tails off, not sure where the conversation is going. Anyway, the second week of nights away is not so bad except my sleep has gone all to pot, as they say. I am so tired I am hallucinating and even when dozing, I wake myself by moving my hands to pat the heads of animals in my dreams and start talking to myself about half empty jars of pickles which don’t exist in my bedroom. It’s a very strange, surreal feeling, this lack of sleep. I become quite unsteady on my feet and have to be careful when leaving my study as the entrance is near the top of the stairs. Even without the aid of a little dog, it would be easy to pitch myself down them.

I am upstairs with Lark when Dog starts up a mighty barking and growling downstairs. This normally means someone is at the door so I wend my way downstairs and find I have left the back door open and there are 2 people standing the other side of the gate looking bemused. Archie quietens immediately, his door duties having been attended to and we stand there exchanging pleasantries for a few moments, talking about the weather, the dogs, the garden. I know what they want and I’m trying to think of a way to deter them pleasantly. I am tolerant of most faiths I have encountered and don’t want to rain on their parade, even if I think they are barking mad. The man has a nasty scab on his nose which keeps my attention and he starts by talking about war and sickness in the world. I slip in that I have terminal cancer, thinking playing the C card might get me out of the conversation quicker. They are very sympathetic and talk about God having a date in mind “and he won’t change it!” the man warns but that after that the Earth will become a paradise and there will be no more need for doctors, no more wars and no more starvation. All the dead will be resurrected and then I got a bit lost because he was talking about sin which doesn’t mean you’re a bad person or have done something bad but that you are imperfect. The woman pitches in at this point asking if I believe in the resurrection after death and I tell her no. “But it’s in the bible” she tells me. I say there are lots of things in the bible which are interpreted in many different ways and that I don’t share her belief. “Do you have faith? What do you think will happen after you’re dead?” she persists. And for some reason, in that moment she just gets to me. I couldn’t put into words what it was she said or what I was thinking but I felt tearful and thought “Bugger! Let them see they’ve upset me” so I just cried and said “I can’t talk about this any more”. They were apologetic for my feelings but still tried to push a leaflet on me so I don’t think they understood they had gone too far. It’s the idea that you have to save someone whether they like it or not I find bizarre. And the idea that being imperfect equates to wickedness. I didn’t know the woman’s name but know she lives in the village so I shall have to watch out for her.

The window cleaner comes to collect his money and asks how we are settling in and whether we like living here. I tell him we love it and he says he does, too. He lives in Skegness and works there and in Horncastle but loves his round in Old Bolingbroke because it’s so peaceful and he’s a bit of a twitcher. I tell him we see the barn owls hunting in the castle grounds some evenings and that I know we have at least 2 species of owl because they have different calls. He tells me we have several types of owl in this area and then says he has seen little owls in a tree around the corner. Little owls, in case you have never seen one, are about 6″ high and incredibly cute. I think I will work my way round to asking him to show them to me.

At night, I go to bed around 9pm and take 2 sleeping tablets, the only ones I have got left. I am so desperate to get sleep of any quality. I sleep in solid chunks, perforated by ten minutes of being awake here and there. In the morning I feel groggy, as sleeping tablets tend to do, so I lie in for a while and then get up and pretend I feel fine. As the day wears on, I actually do feel better. Mr Mason and I go to Horncastle to pick up medication and run errands. We nip into our favourite butchers and amongst all the lovely pies and joints of meat, I see he has some really nice beef brisket. Hmmm. This makes really good saltbeef IF you can get the right ingredients. I sidle up to the counter and whisper at him (only because my voice is so quiet) “Can you let me have any saltpetre?” It’s not allowed to be sold because apparently you can make things explode with it so butchers can only give it to you if they feel you are responsible and will not tell the authorities. You really need about 125g so not a huge amount. He shakes his head and says they don’t use it any more. I said that was a shame because the brisket looked like it was perfect to make saltbeef with. His face lights up. “I have a brine bath” he says. “I could put it in there for you and you could come back in about 10 days. How would that be?” What a brilliant idea. For some reason it cheers me up immeasurably and we arrange the date to come and collect it. “Will you know us when we come back?” I ask him. “Oh, yes”, he says, but takes our surname just in case. This is one of the things I love about Lincolnshire. People will help you out if they can. Putting our meat in the brine bath is no trouble to him so he does it. I know things like this happen in other places but we seem to have a concentration of people who are just willing to be helpful here and I really appreciate it. It was a good decision move and it’s not every day a man offers you the use of his brine bath 😉

On returning home we find Lark has destroyed the other side of her indestructible crate, bending the bars, breaking the wire and attempting to push her head and body through the hole. I am now worried that it’s too dangerous to keep her in there while we go out, even though we were out for less than an hour. What if she gets her head stuck? She could seriously hurt herself. I know it’s only separation anxiety but at this point I have no idea what to do with her. She is just such a stubborn little dog – but incredibly loveable and cute, too, fortunately! Ideas on a postcard, please!

Making a pig’s ear of it

by

It’s been a while since I blogged and the consequence of that is I receive emails asking why I am not blogging, so much so that it is easier to blog than reply to all the post. And it’s lovely to know people miss me when I’m gone. Actually, I haven’t really been anywhere except on a trip to London for a Hula Hoop meeting. Following the scandal from the last meeting I attended (low calorie Hula Hoops vs the normal kind) we have ditched Jaffa Cakes and gone with my suggestion of Tunnocks Tea Cakes. They are not a hit. Someone thinks they have jam in the middle which, of course, they don’t. It’s Chocolate Mallows that have jam in them. So now I am tasked to find a new cake/biscuit which we will all like, which is individually wrapped and easy to transport. Any suggestions gratefully received.

We have lovely friends to stay and the dogs are over the moon by the attention, sausages and belly rubbing they receive. Our last guests are Ms Marsden and Ms Howard and they are fabulous, helping out in the kitchen, easy to entertain and extremely generous with hugs and butter dishes. The weather is really hot so we spend a morning on the beach, paddling and collecting shells. Also avoiding a man with a huge, agressive dog and his huge, aggressive family. They look like the sort who are looking for trouble and for a while we are identified as IT. It is beautiful on the beach, though, unlike the horrible family who continue giving us ‘evils’ for the rest of our stay. We decide they will all suffer from a dreadful polyester heat rash in their most intimate places together with bad sunburn through the holes in their string vests and that satisfies me. We visit antique shops, have lunch in a pub garden and manage to fit in a visit to the Chocolate Drop, the best chocolate shop in the world. They have single estate chocolate and a huge number of flavours in dark, milk and white. They are also extremely generous in the samples they give. If you visit us, you should put it on your list.

Monday sees me back at Lincoln having chemotherapy. This time I am put in proximity to other patients, a woman having her first treatment who laughs nervously and brushes it off as if it is nothing and a woman who faints when the nurse tries to take blood from her. When the nurse comes back to try again, I distract her (the patient, obviously) by showing her the tapping technique from EFT and she manages to give blood this time without passing out. The following morning, Mr Mason leaves early to go and visit Mr and Mrs Mason Snr. Mrs M Snr has been displaying signs of Dementia and it’s something we can’t leave. Without siblings, Mr Mason has to go and help make some decisions, even though his cousin has been doing sterling work by visiting every week. This leaves me with Dog and Lark who cry when he leaves. I feel horrendous after chemo so my 2 days in bed dissolve in front of me and I get up and pretend I feel normal. Our gardener, Gavin, calls on the second day and arranges to come round to see if there is anything he can do. Obviously I have a manic spate of cleaning and tidying so he doesn’t think I’m a lazy cow and then we spend an hour and a half chatting about all sorts of stuff. He’s a good man.

The dogs play me up. They try to play in the house (strictly forbidden due to size) and Lark goes back to square one with her house training which Dog complains about. Instead of resting in bed and sleeping, I am up and down stairs repeatedly. Lark has developed a passion for cauliflower stalks (raw) which she pesters me for and when they get through her digestive system, the smell is horrendous. Dog needs lots of cuddling. I attempt to bribe them for some quiet time with treats. A Jumbone each in the morning and a couple of pig’s ears in the afternoon. Lark has decided the best thing to do with most treats is bury them. If she’s not in the garden, she buries things in the house. I go to put a load of washing on and find a pig’s ear (partly chewed) in amongst the dirty washing. Later on she whips out a Jumbone from somewhere and Dog looks peturbed as to why he has not been given one. Explaining that he ate his in the morning does not compute. There is another pig’s ear in amongst the clean duvet covers waiting to be put away. Another stuffed into a backpack flap. These are not individual ones; they are being recycled like she’s a spy on the run.

So I will have one more night of naughty dogginess this week when Mr Mason spends a night in London for a meeting and then we’re back to normal. I’m tired, not sleeping well and worrying about each and every temperature I get but all in all, doing well. It seems my temperature increases a few days after chemo and it’s difficult to decide whether it’s a hospital matter or a ‘sleep it off and see how it goes’. My oncologist favours the former and gives me a big lecture about what might happen if I don’t go to hospital and how long I might have to stay. As usual, I manage a few tears. “I didn’t mean to make you cry” he says, kindly. I explain I cry at just about everything and I think I see him make a note.

On the subject of notes – Note to guests – check bedding for pig’s ears.

There’s a hole in my bucket list

by

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.

Tiger, tiger, burning bright – why didn’t you protect the ducks?

by

The last few weeks are full and busy. We have visitors who arrive laden with chocolates, flowers, presents for the dogs and, more importantly, themselves to entertain us. No-one minds when I drag myself off to bed early and don’t over indulge in wine. We take a trip to Chester to see our dear friends Mr and Mrs Hurley, she who has been to hell and back with treatment and an incredibly long hospital stay. As we arrive, I am grabbed and hugged and sobbed over, so intense is the emotion. It is truly wonderful to see them both looking so well and before we know it we have been talking for 4 hours and Mrs Hurley is looking decidedly tired. It’s a real frustration – you look forward to seeing people so much and then after a while you can’t even hear what they are saying, the tiredness which overwhelms you is so great. And yet you don’t want them to go. I don’t want to leave, either, but we have a long drive home so we need to go. They are tolerant with Lark who manages to sneak upstairs and carefully remove a small bear which takes her fancy. She takes it into the garden to chew and throw around and they still smile fondly even though I suspect they would like to throttle her at that moment. The sausage she buries carefully under the bush is dug out and given quietly to Dog who doesn’t mind the dirt. The journey home is excrutiating and I am in pain which I can’t shift. It is such a relief to see our gate and tumble into bed.

Saturday sees the sun shine and the Old Bolingbroke Village Fete. It really is like an episode of Midsomer Murders. Held in someone’s garden, we turn up to see how many people we now know and it’s a pleasant surprise. Those who do know us say hello and those who don’t also say hello and introduce themselves. I meet our next door neighbour for the first time, thus puttting to bed the rumour that I don’t really exist or that I am a Mrs Rochester-type character. I meet people’s wives for the first time and feel we’re starting to become known which is very nice. There is a tea tent with home-made cakes, a home-made cake stall which is laden with fabulous creations. Someone tells us there are mostly one or two people who create all these comestibles and there is a rumour that Doug who used to live in our house has bought a cake made by me. But it’s false – I haven’t made anything but next year I just might. There are a couple of very sad tombola stalls which we feel obliged to try, winning a deodorant and some washing up liquid. There is a large game of skittles being run by the vicar who looks exactly like a Midsomer Murder vicar. He is rather portly and wears a battered straw hat. As far as I know, that is the extent of the Midsomer Murder similarity. No-one was killed by drowning in cheese (a new death designed by my friend Miss Ede and myself, following a visit to the Louth Cheese Shop) and I don’t think anyone ran off with the church money.

Our very good friend Mr Giffin comes to visit and brings his dog, Ludo, with him. Ludo is a very agreeable black labrador with an unhinged streak. Arriving late at night, Lark decides she must repel all boarders and barks herself silly, making Dog join in. She shows a very aggressive streak in defending the house and its occupants and it’s only as they are preparing to go 2 days later that she thinks she might quite like to play with Ludo after all. Dog steps up into the Top Dog role beautifully, seeing Lark’s more extreme attacks off by protecting Ludo and putting Lark’s head in his mouth at every opportunity. He is saying for all the world “This is not how we behave with guests”. Dog is much more socialised than Lark which is something we need to remedy.

House training progresses well until a wet spell of weather sends us back in time. Lark decides she cannot possibly go to the toilet outside when it is raining. I put on a coat and hat and take her outside on her lead for at least 10 minutes and she stands miserably around getting wet but doing nothing. No sooner are we back inside than she has weed on the utility room floor. Dog is clearly joining in the training effort and when she poos right in front of him in the conservatory, he barks at her to tell her it’s not on. If only he could communicate a little clearer, she would get it, I’m sure.

The district nurse comes round to check my bottom but, to my joy, it is a different nurse. I have been brooding on this problem all week and have decided to ask her to take the cushion away so there will be no need for anyone to come and examine me. This nurse is reason itself and I explain what happened last time and she rolls her eyes and says sometimes the healthcare assistants get carried away. She looks at the cushion which I tell her isn’t even very comfortable and she agrees and lets some air out. She is more than happy not to come and check me over weekly and instead we settle on a very agreeable telephone call once a month and a call from me in between if necessary. I realise how stressed I have been feeling over this issue and feel very relieved we have come to an agreement. I really don’t want to fill my week up with medical appointments which is surprisingly easy to do. Even appointments like Reiki start to come burdensome when they are tacked on to a chat with the nurse and an appointment with the physio. I would really like some days where we have absolutely nothing in the diary at all so we can just drift about and do whatever we feel like during the time I feel energetic. I have really started to notice if I miss a morphine pill. The aches and pains that come with its omission are excruciating and oral morphine doesn’t have the same effect. Fortunately the symptoms disappear once I have had 24 hours on the right medication but yes, I suppose I am now addicted to morphine. Not something I had ever expected but it has become an essential part of every day living. I also feel like raging against the unfairness of this illness, how it hits people of all kinds, young and old and, more importantly, people I love. So I am sending a huge wave of love to my friend Ms Baranska who is struggling at the moment and could do with some very positive vibes.

Living in the countryside means we see lots of animals. Some are squashed on the road but we also see the live ones, skipping along include huge hares (how lovely they will taste in the Autumn) and deer (ditto). There is an ostrich farm near us and they have a few ostriches knocking about in a field nearby, wobbling their heads and looking confused. We buy our eggs from a farm that raises turkeys, ducks, geese and all kinds of other birds. You go down a driveway and into the yard where they are all milling around happily and eventually someone comes out and sells you the most delicious fresh eggs I have ever tasted. This time, Mr Mason gets out of the car and speaks to the farmer. Then he comes to the window and says “Get out of the car! Quick! Come and see this!” He is not usually an excitable chap so I am curious as to what has got his dander up. I get out of the car and about 6 feet away, I see this.

IMG_20150722_143255363_HDR

He is so close I could have touched him but I am not that simple. There is a long, complicated story behind his stint on a poultry farm but that’s for another time. The sad thing was a fox got in and killed 17 ducks so there were no duck eggs for us. Now, with a tiger in the yard, that’s one hell of a gutsy fox.

Mr Mason gets his best job ever and I get a pain in the bum

by

I am totally out of touch with how pages appear under what heading on this blog. I used to get upset but now I just don’t really care. It’s a work of art and has to be followed in all its shapes.

The last 2 weeks are confusing, delightful and exhausting. Immediately after seeing the new good oncologist, I think “I’ll let him have a crack at it” and ask him what he thinks my prognosis is. He doesn’t take long to reply, making sure I really want to know. Too late to go back. It’s 12 to 18 months. That means by next Christmas I may not be here or  I might not reach my next birthday. Grandchildren I am waiting patiently for may be tantalisingly out of reach. It’s wrong, it’s all so fucking wrong. I spend time talking with Mr Mason about it as we try to let the news sink in. He will not have it. It’s wrong, inaccurate and he’s not going to believe it. He looks at me and sees a healthy woman and he can’t match the two things together. I feel, well, odd. It seems an awfully short amount of time and I’m aware how fast time goes. The odd piece of work drifts in and suddenly seems quite insignificant. We spend time deciding whether to tell the offspring the lastest news and in the end decide it’s wrong to keep it from them, even though it’s just a few random numbers and may not mean anything anyway. During the conversations I offer them the opportunity to hear what he said but also the opportunity to not know. It’s a horrible choice but they both want to know. Mr Mason jnr tells me the clock has been ticking since my first diagnosis which is now over 3 years ago so he already thinks I’m doing well. There is something in me that finds it hard to accept I have cancer, that I’m ill at all apart from some niggling pains and fatigue which sends me to bed for several days each month. If my life carried on like this, I would be pretty content.

In the midst of all this, the senior pharmacist from Lincoln City Hospital telephones me to discuss my complaint which he finds eminently reasonable. He has already discussed some issues with the on-duty pharmacist and clearly feels there are some issues which need addressing. He apologises several times in a sincere way which soothes me. I feel the issue has been handled well and thoroughly.

We have a visit from our lovely Norwegian friends, the Lavolls. The 2 littlies don’t have much experience of being around dogs and, to be honest, I’m not sure how much experience our dogs have of being around small children. Given that Dog is the same height as Ask, the eldest, things could go badly wrong but by lunchtime he is throwing balls for Dog and they are all romping and playing together. They get taken to the Castle where they can cliimb to their heart’s content and really seem to enjoy themselves. Ask and Liv both have long conversations with me in Norwegian which is patchy, to say the least. I really should try a bit more. The weather is nice and we blow giant bubbles in the garden which amuses adults,children and dogs alike. I always say farewell with a heavy heart as Mrs Lavoll is one on my special girls.

A few days later we receive a visit from the Shaya family whose children are a bit older but equally delightful. They also speak English and love the dogs and spend time playing with them in the garden. Young Master Shaya enjoys antique shops, particularly if there is a possibility to add something to his arms collection and this time he is intent on a sword. The first disappointment is the Hungarian Officer’s dress sword coming in at just under £300. A firm no! We go to many of the Horncastle antique shops and he eventually finds a bayonet which does the job. Mrs Shaya goes back into her youth and finds a Sindy doll with outfits which she just has to have. We have already been assaulted by a number of grotesque and horrific dolls heads and limbs and as fans of horror films, it’s a trying morning for everyone but Sindy soothes our spirits and we go off to the Sebastapol Inn for lunch. The weather is good enough to sit outside and it is after my main course which includes beetroot, I discover I have black hairy tongue. It feels as though something is stuck to my tongue but apparently it’s my papillae who have decided to grow long and luxurious instead of shed themselves. Thanks, Chemo. Although Ms Shaya would rather poke her eyes out than trawl round antique shops, she behaves impeccably and no-one gets hurt. I would like to see her latest cartoon on the external area of the antique shop in the former premises of the Lincolnshsire Coop. It’s enough to give anyone a heart attack.

Several weeks ago I have the district nurse round to see me. Now, I feel I am a bit too early for the district nurse. She offersme many tempting gadgets such as a new mattress (we already have one, thanks) a commode (we have several toilets that I can reach) and a cushion to prevent sores. She looks so sad that I accept the cushion which is now the bane of my life. I have a visit from a diffferent district nurse who comes to inflate it for me (health and safety, dear), and instructs me to keep the box and all that comes with it in case we need to return it. During an earlier conversation with my Macmillan nurse who I like very much, she asks if the district nurse is going to look at my bottom. “No, no, no,” I say, “I will show her my tongue to distract her”. After she has inflated the cushion, she asks if she can see my bottom. Now, when it’s put to you straight, it’s quite difficult, I find, to say NO.”What about your groin?” she persists. Unfortunately it is a day when I am worn out and in bed, watching trashy tv and dozing so I look a bit like an invalid. Before I can say no, her hands have thrown the duvet back and her little hands are feeling all over my mattress. I babble on about its 1500 box springs and memory foam and then she just flips me over and looks at my bottom. And my heels and calves. The real shocker is when she tells me she must come and do this every day.Yes, you heard it right – every day. I can’t quite work out what is really going on but ask if it’s not something we could just monitor ourselves and get in touch if my bottom felt hot or sore. No, not good enough. Mr Mason could look at it and she could just come on a Friday. Oh, joy. That’s the best we can get at this point. I honestly feel she has me down as a woman who doesn’t move at all and I know pressure sores are awful and difficult to treat, not to mention painful, but I don’t think I’m a candidate at the moment. So Mr Mason has to check me every morning after my shower to make sure I’m not developing any sores and he is formally authorised to look at my bum every day. He is in heaven.

What’s going on?

Featured by

I am a 56 year old woman living with secondary cancer. I was diagnosed with Inflammatory Breast Cancer in March 2012, that rarest and most aggressive of breast cancers. Often mis-diagnosed, it presents itself with redness and swelling, a change in the consistency of the breast rather than a single lump. My GP examined me and said it was not cancer but offered me the opportunity to have it checked out at the breast clinic. Fortunately I took this up and so we knew what we were handling with quite early on. My treatment regime was tough – 3 sessions of FEC, 3 of Docetaxel, a radical mastectomy with full node clearance and 25 fractions of radiotherapy together with a further 3 sessions of Docetaxel and a year of Herceptin. Despite Professor Palmieri’s best efforts, I was diagnosed with secondary cancer in the lungs in June 2014.

I am on the fourth chemotherapy since diagnosis and it seems to show some effects. A positive CT scan which showed a reduction in lesions was tempered by a prognosis of 12 to 18 months, a lot less than I was hoping for.

At the point of the secondary diagnosis, my husband, Mark, and I decided to carry out an ambition we have held for some years and that was to move to Lincolnshire and have a quieter, more rural life. Despite the shock and incredulity of my oncology team, we managed it and moved from West London to a small village in Lincolnshire in March 2015.

I am lucky enough to have Mark, who I have known since 1978 and who has stood by me through each medical crisis. I also have 2 adult children – Francesca, who is a practising Birth Doula in Bangkok where she lives with her husband and Oliver, who lives in London and does something important and complicated with computers. They have all been solidly behind me providing love, support, hugs and inappropriate jokes. I love them enormously and dread the day we will all be parted.

Since January 2016, we have my mother-in-law living with us after my wonderful father-in-law died. She has dementia, is very deaf but so far refuses hearing aids and has turned our world upside down. We are just starting to come to terms with what we are dealing with and some of it ain’t pretty. So please forgive the swearing, complaining and insensitivity. Life has just changed beyond what we expected – yet again.

As for this, this is my blog. It’s about living with secondary cancer and all that entails. Please read and I hope you will find it interesting and helpful or at least, entertaining. All the bad jokes are mine.

Shelley x

A Mediaeval toppling

by

Through some clever manipulation, Mr Mason and I manage to arrange our week so that we can go to the Lincolnshire show. I love County shows. The week doesn’t start well with Lark coming into season. At first I think she has cut her paw (D’oh!) because she leaves a red bloody mark on my night dress but then, upon investigation and an email to her breeder, we are sure that is what has happened (coming into season not a cut paw). What do we do? We have never been in this situation before. I have a mental picture of all male dogs in East Lindsey rushing towards her and getting to our garden all at the same time. There are dire warnings on the internet and I suddenly feel very protective of my little pup who has no idea what is going on and still enjoys chasing a fluffy bunny and a screeching monkey around the garden. Should I be on one of those Channel 5 programmes as a bad mother? Probably not, I remind myself, she is a dog. Mr Mason and I trawl the charity shops in Horncastle to find suitable garments for her nether regions to keep the house reasonably clean. The first item I find is a pair of Superman shorts. It’s very difficult trying to size up an 11 month old whippet and compare it to a 3 or 4 year old child. At 99p I decide to take the risk but the woman at the counter undoes my subterfuge. “Going for a swim, are  you?” she asks. Now I can either grow the lie or just take it on the chin. “Actually they’re for my dog. She’s come into season today.” The assistant hoots with laughter and can still be heard as we go into the next charity shop two doors down. In the supermarket, I think I have cracked it. A pair of Swimmers! Nappy-type pants for kids who want to go in the water but can’t resist leaving a surprise. Again, the sizing catches me out. Helpfully, someone has opened a packet of the size I think would be right but it seems much too small to me so I buy the bigger size. Getting her into them is another job. She doesn’t mind too much but can’t resist chewing at the tapes so in the end I have to take a roll of sellotape and tape her in. Of course, when Mr Mason takes them off her later (yes, it was always going to be his job), there is a poo in it and I’m not sure who is more surprised.

On our way to the Lincolnshire Show the following day, armed with dire warnings of horrendous traffic jams, we see a rather chubby woman wearing a t-shirt with the slogan PUGS NOT DRUGS! It teams well with her tracksuit bottoms and slippers but we can’t quite get our heads around the slogan and so then make up rude and politically incorrect versions of our own as well as some equally perplexing ones to match the original. FEET NOT MEAT! PENS NOT HENS! You can take it from here. Getting into the show is a breeze. We are shown to the Disabled parking area which is very close to the entrance and then walk through with our pre-printed tickets. Lark is worried by the traction engines but both dogs enjoy the show jumping. They seem fairly relaxed although will not take food or drink from anyone except me and even then, Dog needs lots of coaxing. We find places to sit when we need them, buy some fabulous cheeses, smoked garlic salt, a hat, a wonderful walnut sourdough bread and a pair of ratcheted extendable loppers for Mr Mason who is very excited by this purchase. We go to see the pigs and sheep (PIGS NOT WIGS!) and then find out afterwards that dogs were not permitted. None of the animals seemed worried by each other and the size of both pigs and sheep was amazing. The pigs, particularly, were huge and sleepy while the sheep quietly stood guard. We left the show at around 4pm, thinking we had probably left it too late to avoid the terrible traffic but slid out of the car park easily and got home in record time. Obviously ‘terrible traffic’ in Lincolnshire means something quite different to what we are used to. I am really pleased with the way I handled the Show, managing to stumble round without falling over and being on my feet for quite some time. The weather at the Bolingbroke Mediaeval Madness a couple of days later is not so fair; in fact, it is raining. I have taken to walking Dog rather than Lark as he seems quite steady and sensible in comparison to her skipping and lurching about. Despite her size, she is quite strong, too. A sight hound is spotted at the Madness and so both dogs decide to make a break for it. Unfortunately, the new dog is downhill from us and Dog manages to pull me over completely. One minute I am upright and the next I am flat out, wondering if I have broken anything or not. Getting up is the hard and humiliating part. Complete strangers are offering to haul me to my feet and I feel disorientated and really just feel like lying there for a few moments, now that I have taken the trouble to get down there. Unfortunately this type of inactivity comes with the label of ‘slightly mad woman’ so I allow Mr Mason to haul me to my knees and then I flounder around and do the rest without looking too overwhelmed and I hurry away with Dog and apologies for my clumsiness. Being unstable does upset me, though. Sometimes I find it hard to walk in a straight line and my family is obsessed with me getting in people’s way. I often feel a firm hand in the small of my back ushering me along or being grabbed by the hand to move out of the way or cross the road. The latter move is doomed to disaster as the grabber is inevitably moving faster than me and if they persist will end up with a far more embarrassing scenario as I land flat on my face. Following the Mediaevel Madness toppling (‘toppling’ being the phrase coined by Mr Mason jnr for my many falls, including a spectacular one on the Champs Elysee for which, I suspect, i am still not forgiven), I feel exhausted and go and sit on the sofa and pretend to watch something on tv. Mr Mason goes back to see the one or two knights who have come to do battle and I don’t even realise he is gone. Apparently the knights really go at each other, dealing heavy blows as though there has been a slight disagreement over a pint of real ale earlier in the day.

And so sets in a period of extreme fatigue which is why it has taken me so long to update my blog. But the world doesn’t shut down nor does excitement and laughter which is a great part of the Mason household so I will be back before long with more tales of mayhem and destruction (and probably toppling). Enjoy a rare sighting of me in a photograh, completely unprepared and not having my photogenic body on.

P1000125 P1000145 P1000150 P1000133

Guinea pigs, £9 per kilo

by

So Monday is the first day I have my chemo at Lincoln County Hospital. My new oncologist seems a lot sounder than the last in that he will answer questions and doesn’t appear to be having some kind of breakdown. He’s in agreement about being seen every 3 weeks and generally we are on the same page. We get there on time and I am called into the chemo suite just before my appointment time of 11am. Hurrah! They are on the ball and do my observations quickly. My nurse, Laura, asks whether I would mind if she plugs me into my portacath as she is learning the procedure. Everyone has to learn so I say it’s fine. I have had trained nurses take 3 long and unpleasant attempts to hit the centre before and I’m sure she won’t be that bad. She is observed by a senior colleague and happily hits it first time without much pain. A portacath, for those of you who don’t know, is a device sewn into your chest with one tube going into a vein near the heart and the other end sewn into the jugular vein. It’s not really visible apart from the scars where the stitches have been. The nurse feels around it and then inserts a needle into the centre of the port which has a rubbery membrane over it. If she hits the spot, the needle goes into the port and the chemo goes into the tube then the vein. It’s a great system once the incision has healed as there are relatively few risks and little chance of infection, one of the major worries with cancer.

So by 11.20 I am wired up and having a saline drip fed through, waiting for my chemo. At about 12.20, the pharmacist appears to ask me about my prescription. He is unsure (he says there is ‘some debate’) about what else to give me. Do I need steroids? NO!! What about anti-sickness meds? I tell him I manage that orally as the nausea is unpredictable and can come on at any time. He offers to give me Ondansetron, a strong anti-emetic with the chemo. I tell him this is unnecessary as I have Domperidone, a lighter version, at home and that this is fine for me. After some humming and ha-ing, he goes away saying he will go and sign the chemo off. I wait. A nice lady brings me coffee and biscuits and a bit later a sandwich. People come and go but I am still sitting there. I just feel more and more upset. I ask the nurses when the chemo will be ready and they check with pharmacy but say it isn’t ready yet and apologise again and again. I ring Mr Mason, who is waiting in the reception, and advise him to go and get a sandwich and possibly let the dogs out of the car as they are waiting patiently for us, the infusion only due to take 30 minutes.

By 2.30 I am distraught and, despite my best efforts not to, start crying. A lady sitting next to me alerts a nurse who asks what the problem is. I explain I have been there since 11am and I just want to have my treatment and go home. She promises to go and ring pharmacy again. At 3pm, the pharmacist is back on the ward having a lovely chat with a patient which seems to go on forever. I stand up and stare and stare, willing him to look at me and feel guilty that he hasn’t done what he said he would. If I was not wired up, I would go and interrupt him and ask him what he thinks he is doing. I rarely complain on the wards. The nursing staff work so hard and I know there are things that go wrong which are rarely their fault. He manages to ignore me although he must feel my laser eyes burning into him. Another nurse comes by to apologise and, seeing I am so upset, asks Mr Mason to come in and placate me. I am seriously thinking of just taking the needle out by  myself and going home. Mr Mason persuades me this is not a good course of action and goes to let the dogs out once again. I feel angry on their behalf. Eventually, at 3.30 my chemo arrives and the pharmacist has ordered Ondansetron despite our earlier conversation. The nurses call him over and ask how they can override the system as I refuse to have it. He looks at me and says “Hello” without smiling. I stare back and don’t even bother to reply.  He blusters that he has to add Ondansetron to the prescription and I repeat I neither want nor need it. He looks at me as though he has picked me up on his shoe and I dare say my face isn’t any nicer. My laser stare wins, I am plugged in and off I go. The actual treatment takes 30 minutes so even with the needle insertion and flushing of the port, the treatment should take no more than an hour. I ask the nurse whether there are very few patients on this treatment as that would explain his uncertainty but she tells me that they have quite a lot of patients on Kadcyla so why he’s been faffing around, I really don’t know. Chemo is finished and a flush is put up but on an incredibly slow drip. After 20 minutes I grab another nurse and beg her to take it down. I am done. It’s all fine. 2 of the nurses urge me to make a complaint. I explain I don’t wish to complain about them as they are doing a great job but they insist I should and that they will not take it personally. It’s next on my list today. We leave the unit at 4.30, 5 and a half hours after I arrived for a 30 minute treatment. I feel exhausted, wired and just want to get home.

Driving away from the hospital we are almost immediately in countryside which is really quite soothing. It’s a very different drive from the one home from Charing Cross. I see a sign advertising guinea pigs for sale at £9 each. I tell Mr Mason “Guinea pigs for sale, £9 a kilo”. “Really?” he says but I can’t keep the cruel joke up and tell him it’s really £9 each. Then it sets us off wondering whether it would be better value if it were per kilo. It depends on whether you are going to eat them, I suppose.

When Granny tried to pick up Bob’s friend in the pub

by

My brain tells me that if I am officially ‘better’ on paper then I should feel better. The fact that I feel as tired as before and now have a lurking pain beneath my ribs on the right side (not that there’s a wrong side) is just plain wrong but there you go; that’s life. This week I have an appointment with Aaron, my Macmillan trainer who comes to give me a pedometer. After a walk to Gibraltar Point, it’s a bit depressing to see I have only walked 635 steps. But I know I’m not really well. I feel cold all day and when I go to bed early, find my temperature is over 38.0 which officially means a call to the hospital. I don’t feel in an obliging mood, though, so decide to watch something trashy while I fall asleep and when I wake in the night, my temperature has dropped so I am OK. My temperature varies a lot, though. Officially, I am supposed to call the hospital if it drops below 36.0 or over 37.5 but that’s a really narrow band and my temperature often drops quite low, even if I’m feeling perfectly well. I think I’m generally a low temperature person. And it’s disappointing about the pedometer, too. Aaron tells me one of his clients straps her to one of her cats if she feels a bit down and enjoys reading the huge number of steps at the end of the day. I think I might try it with one of the animals here on the homestead. If only steps were as easy to do as writing words, I would be a marathon runner. I have a phone call from the lovely Cathy at St Barnabas Hospice in Louth who is going to refer me to the physiotherapist to see if she can help with my breathing and will also make an appointment for some sessions of Reiki which I am really looking forward to. It’s lovely to hear her tell me it will help with my pain and also relax me. I know about the relaxation part from previous experience and I have never tried it for pain before but I am optimistic.

At some point last week we go and buy some furniture. One of us is more reluctant than the other. Yes, you’ve guessed right! Mr Mason is not at all keen but I know where I want to buy it from and they have a sale on and we can go mid-week so we go in and find something we like. Hurrah! Even better than that, it is in the clearance section as it has been made to order and then cancelled. Once in the shop, of course, Mr Mason gets very enthusiastic over the purchase of sitting room furniture, especially 2 chairs which are about a chair and a  half in size. I say they are a person and a dog in size which puts him off slightly. In the end we choose something simpler and I decide to buy some spare covers there and then so we will all be sorted. I think this was after we see the oncologist but time is so smudged in my mind that it all melts into one sticky pool of non-remembrance so let’s just say that’s when it was. No-one really cares. I am always fascinated by (usually) couples who are telling an anecdote and then get hung up on a time, date, place or whatever, even though it is irrelevant to the story. “it was on Thursday” “No, it was Wednesday”. “No, I remember it was Thursday because I went to collect the kids from Mum’s that day” “No, that was last week, don’t you remember? I know it was Wednesday because Bob at work was telling me this story about a bloke he knows at the pub and I told you when I got  home and you thought it was hilarious”. “Oh, was that the story about the granny who tried to pick him up? I’m sure that was Friday, you know”. And so on it goes. So maybe it was after the oncologist, maybe it wasn’t and now we’ll never know the story of when a granny tried to pick up Bob’s friend in the pub.

The dogs are getting along better this week. Dog is still taking pride in getting the whole of Lark’s head in his mouth but she is starting to object and is doing more of the chasing. Her best defence is diving into any handy bush or hedge where he can’t get her and from there she can plan her next move in the game. She is keen on moving items of clothing (so embarrassing to find underwear strewn on the stairs – 3 odd socks and a pair of Mr Mason’s pants making it look like the world’s worst swinger’s party If we did swingers parties, we would do them like Heineken, of course) and it’s hard to find a pair of slippers. One is probably languishing in the garden and the other in her crate along with sundry stolen items. We were told before we moved that swingers have pampas grass in their front gardens as a sign to other swingers. I suppose they just knock on each other’s doors saying “Hello, I’m a swinger, too. Can I have a cup of tea?” or something. Imagine our distress to discover not only do we have pampas grass on the property but that it is in the back garden. What does that say in the Swingers’ handbook, I wonder? On second thoughts, I think I would rather not know.

So the music constantly playing in my head is this, of course.Sit back and enjoy Yakkety Sax by the great Boots Randolph.

.