A bullet of yesterday

8am I was awake before the alarm but I still set it to snooze as I had a look at Facebook and read a few pages of my Viz annual. I kept an eager eye on the time because I had to brown the stewing steak and add an onion to my pot of vegetables which were waiting to be turned into a beef stew in the crock pot. After having some breakfast (buttered toast), I hot footed it upstairs to wash and dress so that I was out of the door by 9:30am.

10:30am was the time of my appointment. I parked at the park and ride and I was in the clinic for good time. However, I was kept waiting. There were patients before me who needed more time. I probably also took up more time than I was allotted, so I won’t complain. I finally got seen at gone 11:30. My only complaint was that I was sat under the television having to listen to Homes Under the Hammer and whatever drivel followed that. It could have been worse. It could have been Jeremy Kyle. Consultant was happy with what she saw, but that entailed me going onto do another mission…

12:45pm I was getting a bit anxious that I needed to be home for the afternoon, so quickly ditched my retail therapy plan and made a beeline for the pharmacy where I collected my single 150mg dose of Fluconazole for the thrush that the consultant has seen. I have to return tomorrow (or today because this blog post is being published tomorrow) to collect HRT patches. I also purchased some paracetamol as it’s clear that I really do still need them. While waiting for my prescription to be dispensed, I went across the road to the bakery and spent £2.70 on a current slice and a Cornish pasty. I then went home, ate my lunch and browsed Pinterest while I waited for the Avon lady to come with my new lipsticks, etc.

5:45pm I’m home and waiting for someone (else) to call in. During the afternoon, I have been to Lidl (I bought a birthday present), The Range (I bought some personal stationary for myself and browsed kitchen stuff) and to Tesco where I bought what I set out to buy – a ‘gate’ clothes airer for £7. I then called into see the Recycled Teens where we had a catch up of their weekend away and my week away.

6:30pm I have had my guest call round and leave. I have hoovered upstairs and dusted. I haven’t done any real housework in a few weeks and I live under a quarry. Things get dusty and Flossie is coming on the week of the 23rd of October. I don’t want her to be moaning about my “dust” and her asthma. I think it’s tea time now…

8pm It’s time to settle down on the sofa and watch TV. My dinner is eaten, my washing up is done and I have a French Fancy and a cup of tea waiting for me.

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I might end up falling asleep on the sofa, or I might actually make it up the stairs.

It’s been quite a dull and unadventurous day, really, hasn’t it? Tomorrow (today) is even duller, with not a plan in sight…

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Confessions…

Admittedly, this is an odd title to use to give a big update to the people I know. I thought now was time to confess what I’ve been up to during the British summer that we’ve just experienced. I have (I hope) succeeded in keeping my private life off Facebook. Now that my summer has come to an end, I would like to be honest and share what’s been going on in my life.

Before I open my heart and confess all, I would like you to respect the fact that some people don’t know that this blog exists so the status sharing this link has been hidden from them and I would like it to remain that way…

Some of you already know where this blog post is headed for. If I haven’t told you, please don’t be offended. Maybe we’re not that close. Maybe we haven’t spoken in a very long time. Maybe this isn’t something that I could put in an e-mail. Maybe I didn’t want the sympathy. Maybe I wanted to be left alone to deal with this on my own terms and in my own way without worrying about my privacy and being harassed with unneeded and unwanted sympathy. Please don’t forget that I’ve been here before. I’ve lived through a period where everyone knew my business, and I didn’t really know who knew what. Whatever the reason you don’t know, it doesn’t matter; please don’t be offended because no one really had a right to know anything in the first place.

There’s nothing anyone could have done for me anyway. It’s not like someone else could have taken my place or dealt with the problems that I’ve had. If I have needed practical help, I’ve known who to ask.

You see, my summer hasn’t been all as exciting as I let Facebook believe. And that’s ok!! I have deliberately kept this off Facebook because I haven’t wanted sympathy and I didn’t want to feel obliged to update people. I’m not public property. When I’ve been liking your statuses and giving you an LOL, and posting pictures about my garden and liking your pictures, I’ve actually been dealing with an incredibly serious situation. I have had an incredibly painful bladder. I’ve had diarrhoea something bad. My lady bits have felt as though I’ve been scrubbing them with sandpaper before drying them with a blow torch. My entire pelvic area has ached. I’ve felt so, so tired. Some days I’ve really felt quite sick.

Most importantly throughout the summer of 2017, my blood counts have been very good and I have not needed any transfusions.

No, I haven’t had a bad holiday… I have remained firmly within the confines of the United Kingdom…

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My radiotherapy machine

At the end of May, I was diagnosed with cervical cancer. At first we hoped that it could just be chopped out like a disused pocket. I really hoped that it could be chopped out because then it was out. One doctor and I had already discussed the possibility of preventative surgery but I didn’t realise that it was so bad. Unfortunately, the cancer was too ‘progressed’ for me to have surgery, so I have been receiving radiotherapy. Because of my bone marrow transplant in March 2009, I wasn’t allowed chemotherapy, but I have been allowed radiotherapy. I’ve had 25 treatments of external radiotherapy and then I have had three treatments of internal radiotherapy (brachytherapy – not at all pleasant; linked to a Macmillan web page). In fact, one of these brachytherapy treatments fell on my birthday – but I still got my day out. Instead of a good drink, I had good drugs. But, most importantly, I still had birthday cake! I’ll take myself for a proper day out when I feel a bit less dependent on needing to empty my bladder continuously.

I go and see my oncology doctor next month – and I get another MRI after that – and then we’ll know what’s going on. Hopefully my summer of ’17 has done the job and that I can go back to living my life. The last brachytherapy had a very positive outcome – that my oncology consultant couldn’t see the cancer… Now, though, I’m starting to feel the effects of the menopause (hot flushes, more than anything) so I’ll be popping the HRT pills sooner than I hoped.

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Where possible, I have stayed smiling throughout the summer 🙂

If anything, this experience has taught me a couple of things:

  1. I am ok on my own.
  2. Life really isn’t fair. I don’t deserve cancer after having to have a bone marrow transplant. No one does. It’s really not fair.
  3. I don’t just hate sympathy – I despise it. It does me no good and it makes me feel worse. It really can turn a good day into an incredibly crappy one because I know I wouldn’t be getting this sympathy and/or attention if it weren’t for the fact I’m in the situation I’m in.
  4. I am now determined to do my utmost to not be working minimum wage jobs on zero-hour contracts which involve unsociable hours (where possible) by my next birthday! When I lay it out, all I am is a glorified slave making someone above me richer who gets to do less work and enjoy life more than me. It’s time that I make all my own dreams come true and live off the profit from that. As Bridget Jones says in the last move: #letsdothis

I am currently requiring pain relief on a daily basis. Some days I need stronger stuff than other days. I have gotten myself a routine – I have been getting all my errands done that involve using my car, done in the morning when I’m only needing paracetamol. I really can’t do anything that requires adult supervision once I’ve taken the co-codamol – definitely need the adult supervision when I have had the oramorph!

I don’t really make a habit of sharing my blog via my Facebook page, but if it’s something that you would like to read, you can subscribe to it or follow me Twitter (@beckysefton) where it’s automatically shared. Relating to this blog post, I have (in recent weeks) written other posts which kind of tie into this:

Motivation is sleeping

My motivation at the moment is somewhat lacking. I feel tired, I feel fed up, and I feel like things are piling up even though they aren’t.

I have my weekly cleaning chores. I’m not doing them to my 100% satisfaction. My printer is dusty. My desk is a mess. My bathroom bin is almost over flowing. My kitchen floor needs a jolly good mopping. My car needs hoovering out. Every time I consider doing one of these chores, I have a nap instead.

I have projects which are all in progress – two knitting projects (both gifts) just lying around half completed. I have personal projects which are in several different places and at different stages. I keep thinking that I’ll be more motivated after 40 winks, but I’m not.

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I have lots of things on the Netflix to watch and a few things on the iPlayer to watch but instead I find myself watching Carry On films on DVD under my quilt on my sofa where I end up having a little snooze.

I feel like “oh, I’ll do it tomorrow”. But you know what? These things are stacking up and they really are just things. When I have a rat infestation, or I have mould growing out of my freezer, then I know that I need to do my chores. Until then, my motivation is sleep. I’ll sleep to motivate myself to completing these tasks when I’m ready. 🙂 For now – this is where my motivation lies and many of my dreams are being dreamt:

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Do you have children?

I think the most annoying question that I’m asked can differ depending on my circumstances, but right now, it goes a little bit like this:

Them: “How many children do you have?”
Me: “None”
Them: “Oh, you don’t want children?”

Or, it goes a little bit like this:

Them: “Do you have children?”
Me: “No”
Them: “You don’t want them?”

Then my responses can open up new dialogue:

Me: “I can’t have children”
Them: “They told me that and look now! I have ten!”

Or:

Me: “I’m infertile”
Them: “Doctors get it wrong all the time. My cousin’s friends aunties goldfishes previous owner’s mother-in-laws great-nieces friends sister’s teacher’s daughter was told the same and she’s just had quadruplets!”

Or:

Me: “I don’t want children”
Them: “You’re only 30, you’re still young. You’ll change your mind, you see…”

Leaving alone the fact that I don’t want children, the option has been taken away from me. My treatment will bring on the menopause. I don’t mind people asking if I have children, or how many I have – but I wish they would shut the foxtrot up when I respond with “no, I don’t have children”.

This is a rather sensitive subject, really. Maybe I’m a bit tougher to it. I’m not afraid to walk away. I’m not afraid to tell someone that they know absolutely nothing about me. But, it could be worse. I could be less tough. I could be vulnerable. It could be an incredibly sensitive topic and their follow-up comments don’t help.

You see, not every childless female past the age of 16 is wanting, or able to have, a baby. Some of us are too selfish to facilitate this life-changing addition to our lives. Some of us have had treatment that have left us unable to have children. Some of us don’t want children because we fear they could inherit something bad. Some of us can’t have children because it would endanger our own lives. Some of us don’t want children because we can’t afford a child. Some of us don’t want children because we don’t have a father for said child (and therefore can’t have a child).

I wonder why it’s ok to follow-up with such questions? I don’t ask “are you married?” and then follow-up with questions about their sex lives. These things are quite personal. I get asked about marriage, too. Do I have a partner? Do I have a husband? When I say no they presume that I’m some kind of “loose lady” or they tell me “you’ll meet Mr. Right soon enough” or “are you a lesbian?”… I can’t just be “single”… Or, worse, I’ve been out with my brother and it’s been presumed that he’s my husband…

So, I blog this question (about children) because it really is an insensitive question to follow-up on when someone tells you that they don’t have children. Yes, I’m tough. Yes, I have a hard exterior. But, sometimes, that exterior is cracked.

When someone says that they don’t have children, it’s not an open invitation to pacify them with “your time will come” and patronise them with any similar comment. Just as it isn’t helpful to tell someone who can’t have a child “well, you can always adopt” (because, we’re dumb and no one has thought of telling us that / we haven’t figured it out for ourselves yet). Sometimes, the best response is silence. Sometimes, the best response is to shut up. Sometimes, the best response is to change the subject.

Would you tell a widow “it’s ok, you can always remarry”? No? Why’s that an insensitive comment to make when follow-up comments about not having children are ok? I’m somewhat confused…

Lemon and orange barley water: recipe

I’ve blogged about this particular drink a couple of times. First, it was recommended to me as the drink to have when you’re experiencing bladder issues. Then, I followed that blog up to say that it does work. Since drinking the lemon barley water, my bladder has been considerable less painful.

Unfortunately, the only version of the drink that I am able to find in the shops is the Robinsons brand. I’ve noticed that Morrison’s sell their own brand of barley water squashes, but not a lemon barley water flavour. So, at £1.99, it feels like a lot of money for a drink that I’m not exactly enjoying. It’s just lemon squash. It’s not something that I get all that excited about – it’s not as nice as lime cordial…

My step-mum, Fi, suggested that I might make my own lemon barley water. So, I looked at a few recipes online and I have come up with my own concoction…

  1. I washed 100g of pearl barley in cold water
  2. I put the pearl barley into my crockpot with 1.5 litres of water
  3. I added 2 sliced lemons and 1 sliced orange to the crockpot
  4. I left these components on a low heat for 3 hours
  5. I switched off the crockpot and removed the fruit
  6. When the fruit was cool enough to handle, I squeezed it into the cooling crockpot
  7. While the mixture was still warm, I poured it through a sieve and added 4 tablespoons of honey
  8. I left the drink to cool before putting it in the fridge

Of all the recipes I read, not once did I read to use a crockpot. The thing is, I love my crockpot (thanks Shellie) and I haven’t been able to use it much recently. I thought, if I had to cook the barley anyway, I should do it in the crockpot, with the fruit, so all the flavours can mingle and infuse. I thought that this way, I would get more flavour in more time.

The drink is quite sharp – but I like sharp. The orange and honey have softened it slightly (I hope!) but it is still quite sharp to taste. If sharpness isn’t something you desire from a drink, I guess you could dilute it with water or lemonade or add some more honey…

I have found the drink to be very refreshing served cold with a few ice cubes in. I just hope that it has the same effects as the bottled lemon barley squash! I guess, if summer returns, I could pour some into ice lolly moulds and make myself a couple of ice lollies.

To make 1.5 litres of this drink, it has cost me less than £1. I know that with a bottle of squash I could get more volume for my money, but if this makes a nice change from the squash then it’s all that matters.

Of course, to make Fi and my Nanna proud of me, I have had to decant my drink into a Tupperware jug so that I can store it in the fridge. It’s the only possible way that I can keep my drink fresh…

Definite proof that myths aren’t always myths!

Last week I was questioning the cystitis myth – what is the best thing to drink? Today, I’m blogging to let you know that I’ve had to concede to the fact that lemon and barley water squash might not be a myth. I don’t think Robinsons are exploiting those with painful bladders anymore.

At first I was cynical. I was doubtful. I scoffed.

However, I listened to what the lady in the waiting room told me. I followed what I consider to be ‘armchair expert advice’. And, since drinking the lemon and barley water squash, things are a lot calmer…

I have considered that it’s all psychological, but I really don’t think it is.

I had one evening where I was in considerable pain. I then remembered that I hadn’t drunk any of this expensive squash during the day. After having a couple of pints I was relieved of what I had been experiencing. I wasn’t getting any of this relief from cranberry juice – and that’s the drink that everyone keeps recommending!! Even Tigger is happy by the outcome of the lemon and barley water squash:

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Of course, inquisitive me was curious as to what is in lemon and barley water squash to make it ‘kinder’ on the bladder. Lanarkshire NHS Trust advises patients to drink lemon and barley water for cystitis – so, I read that as it’s ‘medically’ advised, so surely I should be able to get this on prescription? 😉 The only other information I can find is that it alkalises the pH of the urine.

It would be better (for my purse) if I could find a supermarket own brand – perhaps they are there and I’m just not looking hard enough, but for now, I’ll spend out ~£2 for a bottle of this stuff.

So, myths really aren’t just myths. Sometimes there are truths behind the myths.

Entry 4

Entry 4 from Journal of the Nightmare Patient:

Dr Augustus and his team (there are so many of them!) have visited me on the ward this afternoon. He shared with me the diagnoses that he’s considering: aggressive leukaemia or aplastic anaemia.

I’ve heard of leukaemia. I know that’s a serious disease even without the prefix of “aggressive”. I know that leukaemia is cancer. I hope it’s aplastic anaemia and not leukaemia. Aplastic anaemia doesn’t sound scary. Aplastic anaemia doesn’t sound life threatening. I can’t remember what Dr Augustus said about aplastic anaemia – I wasn’t ignoring him, I just wasn’t really listening.

Of all the questions I could have asked him, I could only think of one that I want the answer to! It forced its way to the forefront of my mind. It blocked out all other questions that I could (and maybe should) have been asked:

“Am I going to die?”

No matter how many different ways I worded the question, Dr Augustus gave me the same answer: “I don’t know”. I know that he doesn’t have a crystal ball. I know that he can’t look into the future. I know he can’t give me the answer that I so badly need. He doesn’t know himself whether I’ll live or die (hence “I don’t know”). He only has the facts as they are presented before him. He doesn’t know what’s going to happen. He doesn’t even have a final diagnosis for me; he’s only working on speculation. But, Dr Augustus’ refusal to answer with anything other than “I don’t know”, infuriates me. What kind of a doctor is he?! He must have some idea!!!!????

I’m now sat on my hospital bed, crying my eyes out like a pathetic child. The nurses have drawn the curtains around me to give me some privacy. Or have they closed the curtains so that I don’t scare the other patients?! I feel alone. I’m terrified.

What’s happening to me????

It isn’t fair. I’ve only come to the hospital for a routine operation. How has it lead to a life-threatening disease being diagnosed?????? Until last week I had been leading the life of a “normal” twenty-year-old. Now, my world is being tipped upside down.

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