Tag Archives: terminal cancer

Come into my brine bath…

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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 šŸ˜‰

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!

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.

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 leastĀ  you’re keepingĀ  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.