Well it seemed like a good idea at the time …

A few long, long weeks ago I decided that I might as well give this fibre optic broadband a go.  A quick search showed that my service provider offered it in my area so I contacted them to asked for an upgrade.  Within a few days a new router arrived which I set up and waited to be astounded by the new speed of my internet downloading.  I was certainly astounded.  It was zero.  Several weeks and frustrating, utterly unhelpful telephone conversations later, I flounced off from that particular “provider” and ran to the comforting arms of BT.  Well, sort of.  The date they offered me to set up my super dooper router (hey say that out loud, its fun!) left me with a 2 week wait still without internet and thus pictures of cute kittens, celebrity gossip, online shopping, ability to order prescriptions etc. Never mind I thought.  It’ll be worth it.  Gosh was I excited when the day came that according to the email an engineer would install everything – between 9am and 1pm.  I waited.  I called at 3pm and spoke to a young man.  Unfortunately the line was incredibly bad, so apparently was his day if the tuts and sighs were anything to go by and my request for him to call back was ignored.

You should know by now I hate playing the cancer card.  Nine times out of ten it has nothing to do with the situation I’m dealing with so all it achieves is making the person on the other end of the line feel bad or think that I’m pulling a fast one to get preferential treatment, neither of which make me feel good.  However, I get tired quickly these days.  Frustrating, upsetting conversations with incompetent people exhaust me – hey sometimes non-frustrating, perfectly lovely conversations with loved ones exhaust me too – but I had to get a pal to call them back the next day because I simply couldn’t cope with speaking to them anymore.  She did.  Blimey, she can be assertive! Thanks J!!

Long story short (delay was due to fact somebody hadn’t flicked a switch they should have, something by the way my former service provider should have been able to spot immediately rather than keep me on the phone for hours while I checked and rechecked the router which in retrospect was never going to work because I wasn’t connected.) Thanks to a very polite, friendly young man who turned up on time and appreciated a good cup of coffee I now have access to cute kitten photos and everything else that I need for my day to be a little more fun and informative. So I’m back.  Usual Sunday thoughts and ramblings will continue.

PS: One of the last short Twitter conversations I had with a remarkable woman I am proud to have known was about the shortcomings of the particular service provider which is one of the reasons I’m not naming them.  Pond scum is pond scum.  Her memory deserves better.  More about that on Sunday.

 

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Park Avenue Beat

Well it’s Sunday morning so I’m here again.  My sleep patterns are a little crazy at the moment so I’ve actually been awake since just before 5am and have spent the time wisely.  The Sunday papers have been downloaded and read from cover to cover.  I’ve joined a new shopping site taking advantage of a 20% discount by simply clicking on a link in the article I was reading about said site.  I’ve also downloaded a couple of samples of books after the reviews interested me.  I’ve got a bit of a queue on my e-reader so I find it better to line up a short sample of a book and see if it grabs me.  I’ve made a few mental notes to try some beauty products (lip OIL? Hmm.  Better give it a try) and photographed a couple of recipes to try at some stage (Jamie’s sweet and sour chicken using noodles cooked in boiling water with a jasmine tea teabag … hmm, that could work.)

However, now I’m sipping coffee and staring at the open page on WordPress and I’m wondering if you’ll mind, dear Reader, if I make this week’s blog pretty much cancer free? Is that just being indulgent? It’s just I kind of feel ok at the moment.  I take correct amount of meds at the right time, I’ve recently purchased a memory foam mattress topper on advice from the District Nurse to keep away any sores when my bony bum has problems being quite so bony, so I’d just like to write about something else.  An interest.

So here’s the drill.  It’s a bit like last week and colostomy bags except that I’d be surprised if anyone urgently googles “Perry Mason” while sobbing in a bathroom.  Perry who?

Some of you are no doubt humming the theme tune.  You will be of a certain age.  Some of you will be frowning in slight recognition perhaps and the rest of you will be shrugging and reaching for the mouse to go and check out something else.

I can get a little OCD about TV series.  I like nothing better than a Netflix marathon.  Especially Netflix for the sheer laziness in knowing you don’t even have to keep pressing “play”.  Netflix will just assume that of course you want to watch an entire series of Criminal Minds for instance in one, glorious “where the heck did that afternoon go?” greedy gulp, only very occasionally pausing to ask you “do you wish to continue” as it checks if you’re still awake/alive.  It’s lovely.  So imagine my joy one day when YouTube metaphorically coughed politely and suggested that as I had enjoyed some 60s programme in monochrome – oh it was an entire series of Alfred Hitchcock Presents – I may also enjoy these 200 episodes of Perry Mason starring Raymond Burr, Barbara Hale, William Hopper and of course William Talman as the ever thwarted, inclined to gibber with rage when Perry does one of his clever court room manoeuvres District Attorney, Hamilton Burger. Two.  Hundred.

This was a few months ago and I’m sad to say I’m very nearly at the end of my Mason Marathon.  I’m having to seek out further episodes that aren’t on the site sharing the 200 (although actually towards the end of that list there are some episodes that are either cut in half for some reason or worse … they haven’t got the ending!)  I’ve just found another site that has a few episodes from season 7 which I believe were made in 1963 – 64 and has a few outside scenes and in “The Case of the Fifty Millionth Frenchman” has a young David McCallum doing an extremely dodgy Pepe Le Peau “Frooooonch” accent.

The biggest surprise for me came in an episode called “The Case of Constant Doyle” when Perry helps a client with a case from his hospital bed, the client in question being played by Bette Davis quietly out-acting everyone else off the screen.

So I recommend a bit of time spent in 1960s Los Angeles with Perry and his chums.  Good stories beautifully acted, some vintage convertible cars to spot if that’s your thing or some wonderful 60’s fashion if you’re more into that.

Right, time for The Archers – DON’T get me started on David and Ruth’s move because when Kenton … (FADES TO SILENCE)

 

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A Bag for Life – A User’s Guide

This post is all about colostomies.  You have been warned.

So – colostomies.  I’ll categorise the post so that those who have done a search might find something of interest and assistance from a veteran of  7 months.  Those of you who read my blog for more general reasons needn’t worry, there won’t be a test and I won’t be offended if you feel that it may contain a little too much information and you want to skim or just ignore.

It’s all about being organised.  My bags can be emptied whenever and then re-sealed.  They’ll tell you that a bag can stay on for up to three days but I like to change mine every day; in the morning after my bath works for me.  I get everything laid out before I start.  Adhesive remover spray, disposal bag, moist toilet wipes (personal preference), soft cloth for drying area around stoma.  Nothing worse than being half way through changing when you realise your remover spray is the other end of the room.

Sometimes for various reasons you’ll be emptying the bag very frequently.  It’s a bore but I find it makes things a little more bearable to treat myself to a hand wash in a particularly nice fragrance (Molton Brown does a lovely Pomegranate and Ginger) and a hard working hand cream or balm.  I’ve recently discovered Rituals Miracle Balm which is luxuriously thick and smells gorgeous).

Now about why that bag emptying might be more frequent.  Ah, the bowel is a mysterious thing indeed.  One day things will work fine, the next, when you’ve eaten practically exactly the same, you’ll be bunged up or it’ll be the opposite.  I’ve been told to have a laxative every day but sometimes this wouldn’t be a good idea at all.  The trick is to keep vigilant.  You’ll know what … well sorry but consistency works best for you.  The days of aiming for a proper poo shaped poo have gone I’m afraid.  That’ll hurt coming out.  Sorry to be blunt but there you go.

As for food, there’s loads of really good advice out there but if I add to it I’d say try everything but keep a record.  For instance, yesterday’s dinner involved broccoli which the booklets will tell you may be hard to digest.  In my case it was, so from now on I’ll either blitz it in my NutriBullet  in my new quest for a healthy life style or keep away from it.  I find too much fruit doesn’t work for me.  I had a smoothie the other day that was JUST fruit rather than a few veggies in there too. Gave me the runs and tummy cramps so I won’t be having that again.  However I’ve found that a little ginger either fresh and chopped up or if I’m feeling lazy a squirt from a handy tube kept in the fridge, makes juices taste good and more importantly helps with any queasiness I might have.

I weigh myself daily on my rather clever Withings scales which also tell me my fat mass and BMI on a snazzy graph.  I’m still under 7st but its steadily going up which is encouraging.  I don’t like to see the wrinkles on my arms and tummy reminding me of the sudden weight loss last summer.

Ha! Oh dear I’ve just noticed I’ve been name dropping terribly.  This post is like a 1980’s Jackie Collins novel (“she shrugged the RALPH LAUREN jacket from her shoulders and took another sip of her KRISTAL champagne …”) but I promise I’m not sponsored by any brand.  Just if I think something is good and it works then I’ll tell you.

Until next time.

x

 

 

Posted in anal cancer, colostomy, terminal cancer | 2 Comments

“What the hell are we supposed to use, man? Harsh language?”

I can’t believe my last post on here was written in August 2014.  Blimey! I was in hospital, I was having trouble with my “miracle bowel” and getting used to life with a stoma and a colostomy.  Did the tea lady ever give me that extra biscuit? We’ve got some catching up to do!

So , why have I left it so long?  Various reasons really.  I’ve had to get used to a new “normal”.  Also everywhere you looked last year there seemed to be people telling their stories about their cancer in ways that humbled me.  Stephen Sutton for instance. A 19 year old bloke who raised over £3.2 million for Teenage Cancer Trust before we lost him in May.  I think we’d have got on.  I particularly liked his reaction to him being “trolled” for not dying when he posted what he thought would be his last message then got discharged from hospital.  “Sorry to disappoint you!”, he fired back.  “So you know, I still have my cancer and it’s still incurable, if that makes you feel less “duped”. x.”   It’s the cheeky kiss that does it.

The person who really resonated though, same gender, little bit older than me, cancer in the same general embarrassing area, same gravy making skills was Lynda Bellingham.  A family member called me on the morning of 19th October and I couldn’t speak for crying.  Her experience seemed far too close for comfort to me.  Recently decided to stop treatment? Yep. Dogged determination to celebrate Christmas 2015? Yep but because I can’t help being superstitious and believing in “bad fairies” who listen if you get too cocky I was pretty quiet about it. She published her book and appeared on TV, drawn, grey haired, thin but sparkly-eyed and then … she was gone.  It terrified me.  Luckily, I have fantastic back up; my Palliative Nurse and I were able to discuss how my situation was different to hers and I was able to see her final Oxo advert through slightly tear blurred eyes but for HER not for me.

Let me tell you about my back up then.  It’s all change here.  I continue to be “Ripley in -Aliens- 2-like” by having my own team of highly trained marines although my lot are slightly less sweary than hers.  The one I call and things just happen so I particularly wanted to tell you about is my Palliative Care nurse from the local hospice.  I haven’t asked permission to name her, nor do I think its appropriate, so let’s call her … I know, let’s stick with the Aliens film theme and call her Bishop.  Bishop has been through this with other people loads of times, is probably going through it with quite a few right now and yet when she’s in my living room or on the end of the phone, she has that capacity to make me feel there’s only me.  She’s seen me through the worst this disease has thrown at me so far and will continue to do so with calm gentleness.  She left me with a couple of forms to complete and didn’t mind that, like starting the blog again, its taken me months to do.  I’ll share them if I may.  There are two.  Preferred Priorities for Care which has questions as simple as  “Where would you like to be cared for in the future?” and the, to my mind bordering on the metaphysical, “What are your preferences and priorities for your future care?”  Try pretending to be in my position, or perhaps you’re reading this because you already are, and working out what that actually means.  The other, with the lovely clouds on the cover, is called Planning for your future care. (Advance Care Planning).  I found this more difficult. You have to face stuff that you don’t really want to.  What treatments would I refuse for instance?  If I tick the box “I do not want to be artificially fed or hydrated” will I at some point look plaintively at a bottle of water while a health professional shrugs and jerks a thumb at my signed form?  Well, no, of course not but it seems to me that the form is trying very hard to cover all the bases in a very surreal situation.

I’ve got loads more to tell you, dear Reader, but I think I’ll end for now and then the plan is to do a weekly blog.  Yes I know I’ve said that before. You’ll just have to trust me.

Posted in anal cancer, colostomy, Lynda Bellingham, palliative care, Planning for your future care (Advance Care Planning), Preferred Priorities of Care, Stephen Sutton, terminal cancer | 3 Comments

“You still don’t understand what you’re dealing with do you?”

Oh and it was going so well. I got tired sometimes but I was eating well (really well she says thinking of steak and sweet potato mash and gammon and pineapple and scrambled egg ….hmm? Sorry I just went to my happy place). I even spent a glorious afternoon at the pub outside in the sunshine like a normal person. I’d done enough internet clothes shopping to kickstart the economy of a small country. I was feeling wonderful … Then we get to Wednesday. Ok usual “talk of poo” alert. *pause for few people holding their morning bowl of cocoa pops to leave room*

You know my bum isn’t supposed to be working anymore? Well it started to erm work again and how. It was like “stent gate” all over again. The painful pushing sensation, the adult pull ups, the lack of appetite. By Thursday evening it was decided it was ambulance time again and since Thursday I’ve been startling people on the Danbury ward who remember the relentlessly cheerful one from a couple of weeks ago.

I’ve had a steady stream of surgeons, oncologists and what are obviously 12 year olds in their Dad’s scrubs trying to work out what the heck is happening down there. I’m on the incredibly strong antibiotics again. We’re also trying out slow release morphine tablets twice a day. Not saying they make me a bit gormless but the radiologist who did my CAT scan on Friday night said she’d seen many reactions from patients as they were scanned but a big cheesy grin throughout was a first.

I have a theory about what’s going on but I’m just going to keep it to myself and see if they agree on Monday. All I can say is that at time of writing this I’m in bad, bad need of a large bacon roll and a black coffee and not in need of an adult pull up but we’ll see.

Ok gotta go. The tea trolley lady will be here in a sec and I think I’m one of her favourites as I usually get a biscuit. Catch you later.

Update:  It’s now Saturday morning and I got home on Thursday.  My theory was sort of right but not quite.  Basically what I hadn’t realised is that the colostomy I had done didn’t seal anything off.  I think I’d imagined some sort of knot or something underneath the stoma.  Nooo.  The way I think of it is like a hose pipe.  If you put a couple of holes in it then the water will divert to where the holes are but if those holes get blocked then the water will still head towards the end of the pipe.  I’d got constipated therefore my bottom said “Oh I think I remember what to do.  I could probably help out here.”

So I was sent home after my PICC line was removed – yay!! The doctor said I might have to live with adult pull-ups which I’ll just have to get used to but hopefully most of the time it won’t be necessary as long as my stoma keeps working which at the time of writing it is doing.

I sometimes think and I wonder dear reader if you do too, if I ought to name all the wonderful people in my life who do so much for me, who are just “there” and who, as I type and remember, bring tears to my eyes because their love is overwhelming.  I don’t because this isn’t a radio dedication, its a blog about my experience with cancer but mainly because these people will recognise who I mean and be crying too – they’re soft like that.

Posted in anal cancer, colostomy, terminal cancer | 1 Comment

“Ripley this is an order – open that hatch right now”

(Gang this post covers some pretty serious ground – just a warning)

Early hours Tuesday – I couldn’t understand why the nice man in A&E was asking the question.  Did I want to be resuscitated “if it should come to it”?  All that fuss for a few mouth ulcers.  What did they want from me? The early hours ambulance ride was fuss enough – it could have waited until the morning surely?  I just felt tired – really tired and fed up that I couldn’t swallow a thing and I kept being sick.  If everybody just left me be and I sat very very still it would pass.

Wednesday – I couldn’t understand why my visitors at hospital were red eyed and in between making me howl with laughter kept exchanging nervous glances especially when the nurse did my blood pressure/pulse/oxygen levels.  My mouth and throat were still full of blisters but I was on a saline drip now.  I was settling into the hospital routine, and taking loads of meds including loads of some pretty hardcore antibiotics that were a pain because they had to be given in a drip or I just threw them up.  I was feeling a bit better – couldn’t I stop those at least?

Saturday – I laughed out loud – this was just silly.  I’d got out of bed to plug in my computer on the little side table in my room.  I’d plonked myself down on a visitor’s chair to do so and now I couldn’t get myself up.  I’ve had lots of experience standing up from a sitting position and yet I couldn’t do it.  I told myself not to be so silly, braced myself and went back to bed feeling puzzled.

So – sepsis.  Such a little word.  It nearly killed me.  (I still shake my head as I type that).  My body had very nearly had enough.  When I was admitted my heart rate was through the roof – I had no idea.  For days apparently it was touch and go that I’d had medical intervention in time.  (I promised I wouldn’t embarrass anyone so I’ll just say yes I did down to one person, she know who she is).  Now that I’m home and thinking more clearly than I have in months I can see my situation for what it is.  If I was an IPhone (other smart phones are available) I was and had been on the thin sliver of red battery wise for weeks.  The clues were there.  Dramatic weight loss – a size 6 hangs off me. The fact that something as simple as climbing stairs was startlingly hard. I always thought skin and bone was an expression but I was/am.  It’s tough on my organs and they nearly quit on me and that is terrifying because I’m not ready to go yet.  Yes, I know I don’t have a choice and there’s a whole other discussion for another time but given the choice I don’t think you’d find me in a Swiss clinic knocking back the poison.

Not being ready to go means a whole new perspective.  I’m finally able to eat and oh boy am I enjoying it.  I celebrate little triumphs like climbing the stairs unaided.  I’m not turning my nose up at any help the District Nurse or Palliative Care Nurse suggests. (I have access to bloody cushions from a well known retail store thank you but if they think I currently need an NHS one because I’m so thin I could get pressure sores really easily then sign me up I suppose).  I’ve had a busy week of family and friends coming over and I sit there grinning thinking “I could have missed this”.  The best visitors get the balance right.  It must be so tempting to think that I’m out of hospital so I’m “healed”.  I’m not.  I won’t ever be. But you’ll find me up and showered and happy to be alive in the true sense of the word – and that does me just fine.

Thanks for being there Team Dolly. xx

Posted in anal cancer, mucositis, sepsis, terminal cancer | 3 Comments

My break up with Vinnie

Well he’s gone and I’ve made the decision the break up is permanent. I need to start off by being very clear about this. Chemotherapy is an invaluable tool in fighting cancer either killing it completely or providing some palliative relief. It’s wonderful stuff and this is just about my personal experience.

So it’s coming up for 2 weeks since I had what was supposed to be my first round of 5. As I mentioned last time I was wary. I knew what it had done to me last time including the most disruptive symptom mucositis. Not everyone gets it – I believe it’s round about 10% but it’s very unpleasant. A consultant I met on Tuesday told his students gathered round my bed that it was “like the patient has swallowed drain cleaner”. Said patient nodded vigorously. I was doing ok until this past weekend then one day I realised (with a little help) I couldn’t eat anything and more worryingly I couldn’t drink even a sip of water. My mouth and throat were too full of large painful blisters. Oh and I was being violently sick.

Late Monday night I finally relented that maybe I needed medical help as my strategy of sitting very still and not moving wasn’t working too well. I found myself in an ambulance to the local hospital and well I’m still here!

I’m on a drip and full of antibiotics, steroids, saline, anti sickness, vodka martini …. Oh no that’s right they won’t give me that one which seems a little mean. The blisters are going down and are now just small and vicious like little wasps so that any oral medicine still makes my eyes water a little.

Oh but I feel like I’ve started a new chapter. It’s scary to finally truly say that it’s pain relief only for the rest of this journey however long that may be but it’s also terribly liberating. So to my darling thug Vinnie the chemo I say thank you for trying sweetheart but you were too rough on this girl on this occasion. Go and help someone else – no regrets only gratitude here.

I can’t work out how to tag on this platform so I’ll do that when I get home. In the meantime gang may I offer you a sip of “delicious” nutritional supplement? No I’m only pulling a face because it’s so delightful. Go on just one sip I don’t have to have? Come baaaaack!!!!

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