Check up

Well, long time since last posting, and this is only because I had a check up today with the surgeon. Not the original one who looks like Hamble from Playschool but a locum. All was fine, scar has healed well, that must be the bio oil that I faithfully rub on every day. So nothing more except for another check up in a year’s time and annual mamograms for the next five years, starting this August. (It should be July but I said I would be away in July so August it is). Its slightly odd but at the same time reassuring to have things planned out for 5 years time.

The locum asked if I had any side effects from the Tamoxifen such as hot flushes, I don’t think I do, I do get quite hot in bed but that may be the a combination of the 13.5 tog duvet that we’re still using and/or Oliver’s habit of putting the heating on whenever he feels a tad chilly. My shoulder feels OK most of the time, aches a bit if I’ve been driving a lot and changing gear or reaching for stuff. I still try and do my exercises every day or at least stretch it. And for those people that see me, if you see me rolling my shoulders, its just that it’s got a bit achey.I suppose the main legacy is that I’m aware of my left shoulder in a way that I never was, like trying not to carry the heavy bag on that side. Perhaps that’s a bit precious but there you go.

I realise quite a lot has happened since last September. Some nice things like a lovely long weekend with two best friends in Barcelona, where all we did is talk and eat and walk and drink and talk.

We’ve acquired a lovely little kitten who is very sweet and I try to encourage her onto my shoulder to do that kneading thing that cats do, if I’m wearing my dressing gown it just provides a lovely amount of pressure without her claws digging in.

I’ve started going to a quiz night every Thursday which is fun, I’m still reading my way through my self determined booklist, a list that gets bigger every day. My iPad is still the best thing I own, and will be invaluable on my forthcoming trip to America.

Yes that’s the next thing to look forward to, I’m taking my two eldest to see and stay with my brother and his wife. Just outside Washington DC. It was something I thought about last year but postponed as it works out better with the boys’ exams this year. Good job in retrospect.

That’s one thing I realise, even if you have a relatively easy experience of having cancer like me, it still affects you.Not just physically but in this case monetarily, I didn’t realise that if you’ve been diagnosed with cancer it whacks up your travel insurance premium. Its ridiculous, its not as if I’m having any treatment as such apart from a daily pill, and how many women will be taking the contraceptive pill? and not penalised for that. I could understand if I’d had a heart attack or something that could happen without warning and lead to immediate and expensive hospitalization.

Right then, that’s enough for now.

 

 

This Too Shall Pass

Well that’s finished with then. The waiting room was quite full today with two of the people obviously starting today as they were clutching their appointment sheets. A couple of men that I’ve seen weren’t there, not that I’ve spoken a word to anyone else in the waiting room. Slightly odd for me as I’m quite a chatty gregarious person, but I think its partly because I’ve always had my book to read, but more because I have this feeling that the only thing we have in common is the randomness of cancer. It’s not like waiting for ante natal appointments where you all chose to be in that position. Yes I think that’s it, I didn’t choose to be in this club, and don’t really want to be in it.

Ironically I’ve felt properly ill this week with a sneezy,snotty cold.You do feel like saying “Oi, No! I shouldn’t get stupid colds, I’ve got a proper disease”

So that was it treatment wise, no different to the previous 14 times, finally I’ve had my 40 grays of ray. I was handed my discharge papers, basically just a letter detailing my treatment, and contact details, one copy for me one for the GP.And a “You’ve Been A Very Brave Soldier” sticker.*

It was nice to hand in my fetching gown, plus the one that I had when I forgot my pink spotty one. Plus the one that’s been hanging in changing room 2 for the last week. The car park attendant wished me all the best.

I had seen the Consultant Radiotherapist on Monday, well her deputy. My skin on my breast is a bit pink but not too bad, but it will probably get worse before it gets better. Not to use perfumed soaps,deodorants etc, in fact no deodorant at all for a few weeks. She did say that its very common to feel a bit down once treatment has stopped, partly because you lose the security blanket of doing something every day, and being looked after, partly because your body is still repairing itself which can cause fatigue, and partly I’m not quite sure. But its just part of the healing process mentally as much as physically, and to look after myself and be nice to myself. She said they normally say 6 weeks after treatment finishes before going back to work, to let it all sink in and heal.

I can do that, be nice to myself I mean. And I’m going to see a Macmillan counsellor> Just because although generally I do and have felt OK there have been times where I’ve wanted to rant and rail about it all. And say
IT’S NOT FAIR.

Of course I know it isn’t fair, but it doesn’t stop me wanting to scream about it- and what I’m screaming about is not the cancer per se, because I always knew that would be treatable and be treated, as it has/is doing.
But the loss of me as I was, 6 months ago I was a healthy 46 year old with quite nice if small breasts, who took the odd paracetemol for a headache once a month, and NOW I’m a 47 year old who has a very neat but still disfigured left breast, and am taking a drug which I will have to take for 5 and probably 10 years.Sometimes you just want to scream.

And yes of course I’d rather be alive and taking a drug, but please allow me one rage against whatever. Actually I’m going to rant and rage whether you allow me or not. Because some things aren’t logical.And sometimes even Very Brave Soldiers cry. So I might as well rant to a trained counsellor.

This Too Shall Pass.

*BTW I lied about the Very Brave Soldier sticker.

And spent the afternoon making cakes for the Macmillan coffee morning tomorrow in work.

Still Ill?

Into the final countdown, or last furlong or whatever analogy you want to use. Only four more sessions to go, with the last one being on Wednesday. It’s a shame that my treatment wasn’t in a neat three week block so I would have had only two weekends, but there you go.

It’s gone OK, slight problems with me developing a rash. Having never been allergic to anything save for primulas and primroses, (and they’re fairly easy to avoid in everyday life-I’ve managed it for 40+ years) I’m allergic to the cream that you use to soothe the skin, namely the Diprobase cream. So that’s been a bit irritating but more of an irritant than anything else. I’m now using E45 cream which seems to be OK. Apart from that I have a faint pinky patch on my breast and chest-now I’m not quite sure of my O level geometry but I think rhomboid shape, like a rectangle with a triangle on top shape, with the triangular shape reaching up to my neck.As with normal sunburn, the redness develops over the days, so it will probably get more red over the weekend.

You’ve got to love the NHS (Yes, you do). I went yesterday for my usual 9.10am appointment and whilst I was waiting, Bev one of the radiographers said laughingly. “Did no one tell you, you were down for 8am?” There’s two machines you see, and I’m always on Ffynnon, but that Wednesday it was being maintained so everyone had to be fitted onto the other machine, Gorwel. So they had to fit everyone’s appointments in earlier, but neglected to advise me of this. It didn’t seem to matter, I’m beginning to suspect that they see you in the order in which you’ve arrived, you get to see the same people every day and a couple of days I’ve been called before the man who is normally before me, when I’ve got there early. Of course this is the NHS and we are British so we expect and don’t mind queueing and waiting………

I’ve been tired this week, but nothing that a nap doesn’t cure. And a night out in The Plough on Tuesday night- but that is essential to my emotional well being. Plus it was good fun.Two early morning football games on Saturday/Sunday last weekend, but this weekend is a civilised 10.45 start on Saturday and a morning off football for me.

An interesting question and answer for me came last weekend at the football. One of the mums was asking me how things were going etc, in the company of another mum who obviously realised I was having some treatment. She said “Have you been ill?” “I’ve got breast cancer” I said, but thinking about it, I suppose technically I don’t. If its been removed, and the little bits of space dust are being zapped by radiation, then do I have breast cancer? Am I Still Ill?

Nearly half way through

Just a quick update as I’m nearly half way through treatment. It’s odd going to the same place every day at the same time, doing exactly the same thing- Groundhog Day. The only variation is the radiographers, there’s two each day from a pool of 5, so I think I’ve met them all now. Some mornings I’ve felt as if I’ve sleepwalked/driven to the hospital, especially when I’ve then gone back to bed- I’m sure if someone drove me, I could do the whole thing without waking up. As that’s the biggest side effect, complete and utter exhaustion like a cosh. There’s been a couple of nights this week where I’ve just suddenly felt so exhausted, I’ve crawled into bed and not really remembered anything. All quite normal apparently. But it will get worse before it gets better. :-(. My skin is OK though, perhaps a faint shade of pink. One day this week they gave me some diprobase cream to use to keep it moisturised, its what you use for excema so will be useful when Theo’s patches flare up. The radiographer asked me this morning if I’d shaved my underarm as it looked well groomed, but I explained that I’d had them waxed just before starting treatment. At least now summer is officially over I won’t be wearing short sleeved shirts- what would be worse, one fuzzy armpit, one smooth or two fuzzy ones?

I definitely made the right decision though to do the early morning slots (9.10am) for several reasons, one is that the car park is noticeably emptier- even with my special patient permit, which gives you access to the special cancer carparks, there aren’t that many spaces but are always some, but when I come out at about 9.30, there’s even fewer (or is it less?, never did get that grammatical rule straight. Sorry Mum) Then coming back home, the boys are at school so there’s only John & I and it means I can have a little nap in a quiet house. And it still gives me the rest of the day to do whatever.

Which on Wednesday was collecting my new glasses, 3 pairs to be precise- two are for distance i.e day to day and as its Specsavers its two for one, but you have to have the same prescription. And the third pair is a cheapo pair for computer work, not that I’ll be using them much. 😉 And for reading I take them off, although I can read my iPad if I hold it at arms length. I haven’t sussed out eating glasses yet. My eyesight isn’t that bad that I’m going to fall down holes if I wear the wrong ones, its my ability to refocus which has got worse, but that’s an age thing.

Image

ImagenessImage

 

So that’s about it, lots more reading, lots more napping. I’m STILL on page 1 of What To Read Next, but have read a lot of stuff. And watching old TV programmes. 

Sorry can’t think of a clever title for today’s entry, last week’s was probably the funniest and cleverest I’ll get.

40 Greys of Ray

For the techie/geekie amongst you and for my benefit as it won’t be anything I remember, I asked the radiographer today what dosage I was having each day, and the answer is 2.67 Gry (pronounced “Grey”) per day for 15 days, resulting in a total of 40 Grys. For the pendants and/or mathematically gifted, that’s actually 40.05 Gry but then the title wouldn’t have been as funny. Perhaps the last dose is smaller. And its 6 megavolts. And uses photons. Its magic really though.

Anyway today was day 2 of radiotherapy, meaning yesterday was day 1.My appointment was for 9.10am as are all of them, but they were running a bit late. But with a good book or 194 on my iPad who cares. As it was my first appointment I had to have a bit of a chat, that I was still wanting to have the treatment etc etc. And to confirm my name and date of birth- the radiographer Alan said I would be asked this at every single session. I saw the pictures taken at my measuring scan, weird looking, like those 3D scans they do of babies, which I suppose is exactly what it is. Alan gave me a gown, which he said comes in different sizes to fit no one-its really odd looking like something you’d make in home economics class in school. I can’t believe there is a medical suppliers who actually provide these. Its got velcro down the front and velcro on each shoulder, so the relevant bit of your anatomy can be revealed. -I must ask what the one for your lower half looks like.

photo (1)

Anyway I get to keep this for the duration of my treatment which makes sense-no danger of me wanting to keep it. I’ve got my timetable for future appointments which is 9.10 each weekday morning and then there’s a physiotherapy session on Monday afterwards, and an appointment with Dr Bishop near the end of the course.

So then it was into the linear accelerator room with Alan and another radiographer, Bev and a similar procedure to being measured and marked up, lie on a hard bench with left arm up resting in elbow and wrist cups, and get put into position. More marker pens to point where the tattoo dots are. I could see the reflection of the laser beams criss crossing presumably on the exact spot. And then zapped, the machine rises up at my left hand side and buzzes a bit, then Alan and Bev came back into the room and checked my position and the machine swung round to the other side and another zap. So the actual zapping (I counted it today) is about 15-20 seconds each side, the fiddling round takes a few minutes depending on how still you can be. And its not uncomfortable apart from having to lie on a a hard bench, its actually my right shoulder that aches more,so I think I’ll ask the physiotherapist on Monday if there’s anything I can do for that.

So that was yesterday, and today the treatment was the same but as I didn’t have to have the chat beforehand, it was much quicker and I was all done and I think home by just after 9.30. No visible effects yet as these build up, but I have of course and will take a daily photo so I can see the transformation. And no other effects, apart from feeling tired, but I suspect this is to with too late nights and having to get up for a certain time-something my body isn’t used to. I was hoping the radiation would give me special powers, like Spiderman being bitten by the radioactive spider, but it hasn’t turned me into a superhero or sex goddess just yet. Perhaps I have to complete the course.

On the home front, Dominic my fourth son was 11 today, very happy with his Xbox set up- and so am I as indirectly I have gained a better TV for the bedroom out of it-one with a remote that works.So in tech stuff, I think we’re up to 3 desktops, 1 knackered laptop, 2 tablets, 3 X Boxes and I don’t know 8 or 9 TV’s. And a partridge in a pear tree.

Back in the Driving Seat and topless modelling

Yes folks, I started driving yesterday- and didn’t stall it once. The car being a trustyVW Touran of course started first time, since going to Broughton a few weeks ago.

Anyway the reason for my driving was to go to the hospital for two things, one to have my breasts photographed (no doubt in a few years there will be a CD go missing from the laptop of an NHS employee) and secondly, to attend the Breast Cancer Post Operative Clinic-I think that’s what it was called.

So the photo bit was fine, standing in an office with no clothes on my top half just seems as “normal” as anything else. But just to reassure people, this bit is optional- its to do with the Fast Forward Trail I’m taking part in, and even within that the photos bit is optional. But when you’re like me, revealing your bits isn’t really that much of a problem. The pictures only show from neck to waist anyway, so they’d be a limited number of people who could identify me from breasts alone.Well, quite limited 😉 

So then the clinic which was 5 of us “ladies” as it said on the letter, including me. We had a little talk from the Lymphedema nurse, which was all about how once you have any lymph nodes removed, no matter whether its 1 of 21, your lymph system becomes compromised- fluid can’t drain away as well. Not everyone will get it, but it was just about looking after your arm, not lifting heavy weights, etc etc. All quite logical stuff and not really anything too difficult to do- but it did bring home the fact that there are long term effects-long term as in forever. Not that I would want a tattoo but just the fact that now I shouldn’t. Well it makes you think a little bit

http://en.wikipedia.org/wiki/Lymphedema

Not all negative though, after the little talk we all in turn went to see Mags the breast cancer nurse, who checked everything was OK, and mine is, as in the scar has healed really well. then again in turn to see the physiotherapist, again I have pretty well all the moment back, I can’t quite move my left arm back as much as my right without it hurting, but certainly enough to get by, and doing the exercises will keep improving things. Then we again individually went to see the lymphedema nurse to have our arms measured, as in the circumference all up the arm. This way there’s a baseline of what my arms should be, so if I do develop any problems with swelling they’ll be able to tell.

There wasn’t really much chance to chat to the others, I think three of them had been in at the same time and had kept in touch afterwards. There was a bit of “So what have you had done?” along the lines of “What A Level’s did you do?”, and I think the tally was 2 mastectomies, and three lumps. And two having radiotherapy (inc me), one chemo, one doesn’t know yet and one nothing else as she didn’t alcyalyy have cancer but something else.

Nice as they were, I don’t feel any great need to keep in touch or join a support group either real life or online. Just because we all have the same disease (and even in our little group of 5, everyone’s treatment was different) doesn’t mean we will have anything else in common.

Oh and we got measured and weighed, I’m growing! Now measure 5ft 5 3/4 (and weigh 9’8″) It’s obviously reducing the weight of my enormous tit means that I can stand up straighter.

Called into work after the hospital to get a form to have my eyes tested-or rather have my eyes tested and work pays for the test. I was there for ages though, as I kept bumping into people. Unless everyone is lying to meImage, I’ll have to keep my hair short and purplish-although I think its too dark and prefer the red, but the short hair definitely seems to get people’s vote

 

 

Just saved that as a draft and then couldn’t get it back again.But I did.

So today was back to school for boys, who were OK about it, and I went into Rhyl to meet work colleagues for lunch and took them one of my famous lemon drizzle cakes. Then had my eyes tested and chose some funky new glasses, to go with what will have to be my red/purple hair.
First radiotherapy session tomorrow- I’m not worried at all, just a feeling of I don’t know, having to do the same thing day in day out. But its better than work I suppose and at least I’ll have the rest of the day free and be able to do what I want- which may involve lots of naps.

And reading, I have read so much- and some proper hard books. Finished Gunter Grass’s Danzig trilogy, and ordered a book which studies them- this was so I could understand them. The critical/literary analysis book duly arrived and looks almost as difficult as the texts themselves. But you don’t always have to understand all of something to love it.

Tattoos

Not an awful lot to update except that I now have a tattoo. Or three to be precise, and they’re so tiny that you can’t really see them, three little pinpricks.

So today was the measuring up appointment, all went very smoothly, a bit of a delay in waiting but then a student radiographer took John and I into a wee room and explained what would happen during the scan. And a few minutes later I went into a rather more high tech room and had the CT scan. I’d given my iPad to John to look after otherwise I would have taken pictures of it. Basically you undress your top half, remove your shoes, then lie on a couch which has a foot board to put your feet against (hence the shoe removal) and an elbow rest and a wrist rest. So depending on which side is being scanned you lie on your back with, in my case my left elbow and wrist in these rests-just so you can keep still.There’s also a handle for your right hand to hold, just to keep it out of the way.
Then the three radiographers measured and marked my left breast, using the highly technical services of a plastic ruler, a marker pen and some flexible wire held in place by selloptape. One of the team looked a bit familiar and started talking.
him “I see you work for Clwyd Alyn, my friend works there, Carol H, know her”
Me “She’s my manager. Have you been at some parties at hers?”
Him “Yes”

Anyway I have met him and his wife socially at Carol’s, I suppose its the nature of living in a small place that you will meet various medical people at social events, the fact that you meet them whilst lying on a couch with no clothes on is just incidental.

Anyway once all the measuring and marking had been done, they left the room and the machine started. It was fie, the machine is just like a big polo mint only about a foot deep so most of you is putside the machine. There was a bit of the machine moving about to get into the right position, but if you closed your eyes as I did, it was just like being on a ghost train ride at a fair, you know when it starts a bit and jerks. Only lasted 45 seconds or so.

Once that was done the team came back into the room and one of the radiographers did the tattoos. Now I’ve learnt that “a scratch” in medico terms means a short sharp pain and the first dot did hurt.Its right in the middle of my breastbone where its quite bony. The other two weren’t bad but I was quite glad of the handle to hold onto. BTW the tats are so they can triangulate the radiotherapy beam, so its always directed at the same area. I used to say I’d only have a tattoo if I was dead, but better tattooed than dead eh?

And that was it, I got dressed and then called into work to drop off the sick note, chatted to a few people. Who ALL commented on how well I look- which I do, I have to say. Much amusement at my encounter with the radiographer that I “know” but I’m not one to be easily embarrassed.

So that’s it till a week on Thursday when the treatment starts.