Arse! Feck! Gurls! Drink!

Prospect Sue came round unannounced today – still thinking I spend all day at home, quite clearly, reclining on the sofa, sipping weak tea and sniffing at my vinaigrette, I assume! Told her I was just on my way out to work – I was only at home because I’d spent the morning bunking off to finish the A’level marking!

 

She thought we had an appointment, I didn’t.  She asked if I got her message from 3 weeks back – I got the message but not until I got home from work, by which time she’d left for a fortnight’s holiday. I reminded her I’d told her I’d be at work, reminded her she was meant to phone my mobile. Told her I am receiving no support whatsoever, except maybe choosing whether to go for a pine or an oak coffin! I really had a go at the total lack of support I am receiving – she kept saying she was sorry I felt that way and she would change it. No suggestion of how, exactly! I kept asking where were the support services for people like me; still able and willing to work? She just looked at me, struck dumb – seemingly there has never been a request for such a thing before! I apologised for not being the average breast cancer patient; 60, doddering, with a husband running round after her but I’m not an average kind of person! But neither am I unique – I can’t possibly be the first person wanting to live with cancer, rather than just cock up their toes and die from it – so where was the support I needed? But answer came there none.

Sue said she was glad she’d seen how pissed off I was, though I rather doubt it, and we made an appointment for a couple of weeks’ time – I went for 9am, saying I could see her before work that way. Let’s see if she manages to turn up on time.

 

How can I turn to her for support, when my experience of her is she arrives late to our first meeting; calls the wrong number for an arranged phone call; turns up unannounced for our second meeting and has offered no tangible support? Still I am abandoned, unsupported, left to die, whilst still very much alive. Where the hell is my support?!  My inclination is to cancel all appointments – no-one has any real interest or ability to support me; I’m doing it all myself anyway, why waste time and money schlepping up to Cheltenham or down to Wroughton for more hanky-flapping and picking out the hymns for my funeral?!

 

It’s 2 months since I was first told the cancer was probably back and had probably spread.With out a soul in sight to offer any professional help! I’ve had precious little information on the treatment I’m receiving and rather less information on the results of all the tests I’ve had so still don’t really know the full extent of the problem! I’ve had no counselling about being incurable; having a life-threatening illness; being forced into infertility in order to lengthen my life – each one alone is a f*ck of a big deal and I’ve got the lot to deal with! I’ve had no practical hints or tips for coping with how to tell my employers; what my rights are; what time off I might have or am entitled to. No suggestions for complimentary or physio therapy, based on my particular symptoms/lifestyle/age/general health and fitness, to enable me to stay in work.  I haven’t actually been told in so many words by anyone who actually knows for certain that the cancer HAS spread! The closest I got was Dr C. telling me the ache in my back was “lesions” – that was him saying “I’m very sorry Ms James but the scans indicate the cancer has spread to your bones. This means your condition is incurable, but it is treatable and we’ll be doing all we can to keep you alive and to maintain your quality of life”. That’s what he didn’t say. It’s also what everyone I’ve had contact with – bar Cheshire Jane and Dr Burt – have also NOT said. It IS what Dr Burt said but he also said I WILL get sick. I feel, right now, that Jane and I are the only ones who think I can live past Christmas! And yet, the zoladex could work for me for years, decades even. And these people must know that. But they insist on being doom and gloom merchants and refuse to offer even a glimmer of a hint of a suggestion of the tiniest bit of hope. Why?! What miserable bloody lives they must lead! Imagine going to work each day expecting everyone you work with to be dead within a few months!  Well I’m just going to have to force them to re-write the book! No way am I shuffling off this mortal coil before my cat does! 

 

So Arse to the lot of them! Arse! Feck! Gurls! Drink!! Actually, I’ll skip on the gurls and have double Drink! instead!!

 

Team Building

[Thur 17th July]

I had a good day today – It started early with a Bike Breakfast at 7.45am; all the children who cycled to the school got a free breakfast (well, a croissant and a cup of squash), then I cycled to the office and sent off emails to invite some new schools to join the project, accidentally-on-purpose mentioning there were 7 schools going for 6 places, like you do. Then I cycled over to another of my schools for our last meeting, to help them keep up the cycling after I stop working with them, then over to another school for the same. Then I had a couple of hours free so I popped back to the office and found I had answers from some of next year’s potential schools, asking for appointments. Then over to the school I was last at, to cycle to the local park with 20 kids and about 10 parents for a picnic. The weather stayed dry and we had a lovely time and got back to school by 6.30pm. Then I cycled home and, as I cycled I realised I was smiling. How many people are smiling on their way home at the end of an 11 hour day?!  I have a fab job, I’m really pretty good at it, and I intend to stick around for a good while longer so I can keep having good days like this!

Oh, and in case you were wondering, I cycled about 25 miles in total through the course of the day.

[Fri 18th July]

I met the fairly permanent female GP at my surgery today – I’m getting shooting pains in my poorly boob and needed stronger  painkillers than what’s available over-the-counter to stop me wincing and gasping and clutching my bosom which, apart from being a tricky procedure whilst cycling, is not really acceptable in polite company. When I told Dr Kim she just said it was “unusual” but that doesn’t actually help with the pain! Lady GP was much more helpful and prescribed me two levels of painkillers. She also commented I had a “difficult journey” ahead of me and I needed good support; she asked how supportive the breast care nurses had been – insert sound of hollow laughter here! – offered phone appointments if I needed to just ask or check something, rather than waste my time with an appointment at the surgery for what might just be a quick question; and said she knew Dr Kim by repute; “she’s VERY good!”. So all in all I’m feeling a little more confident that I am, finally, slowly acquiring the team I need.

 I meet “new” Jane, the breast care nurse at Cheltenham (except I’m seeing her at Gloucester – the two hospitals operate as one) in a couple of weeks and we’ll see what each of us expects of the other. But slowly, finally, I think I am acquiring the necessary players to make my team. It would be nice to think I’m not standing alone against this: That I’m not the only one who thinks cancer need not be the centre of my life, just a small part of it. And that I’m not left with the fat kid with the permanently blocked nose that no-one else wants on their team!

Alive and kicking… against the pricks!

I met my new oncologist, Dr Kim, on Tuesday (14th) - just a “meet and greet” as the only info she has on me is the letter lovely Dr Burt wrote to her. I got a little more info about my treatment – basically that I’ll be on one treatment or another forever more, which isn’t a brilliant prospect but, hey it beats dying! If you haven’t looked already, there’s a link from my blog (I think you might only see it if you click “comments”) to an article from the New York Times about cancer as a disease, not a death sentence. It describes what it calls the “hitch-hiker” approach, which is what I’ll be doing; go with one treatment until it stops working, then the next, then the next….and there are more treatments for breast cancer than any other cancer, with new ones coming along all the time, so that should keep me going for, well, pick a number between 6 months and 30+ years! It’s all a bit “suck it and see” and that lack of certainty is a bit of a bugger to deal with but no doubt I’ll get used to it – you can get used to pretty well anything, except maybe a 6″ nail, sticking up through the sole of your shoe…

Nope, the link appears to have wandered off; the links are auto-generated so I can’t control what appears or disappears, but here’s the link – it’s worth a read, just don’t forget to come back here and finish reading what I’VE got to say! http://query.nytimes.com/gst/fullpage.html?res=9F0DE4DF1739F934A25755C0A96E9C8B63&scp=4&sq=cancer%20as%20a%20disease&st=cse

I was meant to meet the breast care nurses at Cheltenham too, but that didn’t happen. But “my” nurse, Jane, in Cheshire called me on Wednesday, to see how I got on and was a bit peeved that the breast care nurses hadn’t made themselves known to me – as they’d told Jane they would - then Jane called them again, THEN they called me! So I’ll meet me “new” breast care nurse, also called Jane, in a couple of weeks. I’m still battling against the assumption that I’m not working and can go along any time, any day – but that travelling more than 2 feet from my own front door might be a problem!Grrr!! In a 10 minute phone call I think I mentioned cycling for a living/cycling 200 miles a month/cycling for work in just about every sentence! And the fact I work full time and will continue to work full time about every other sentence! Hopefully I’ve made my point! Except “new” Jane kept saying “Oh, good for you!” like I was being terribly brave and noble, just for turning up to work each day! What on earth would I do with myself all day if I DIDN’T go to work?! There’s only so many garden/home make-over programmes and amateur antiques expert shows a girl can watch!

Dr Kim is going to refer me to their psychologist – HURRAH! Finally, some REAL support! Why that isn’t the first response to all and every patient diagnosed with an incurable illness heaven only knows! But I have no idea how long it’ll take for that referral to filter through the system. And I’m not due to see Dr Kim herself again for 2 months! I whimpered rather at that and said it was too long to go without support but she said there’s unlikely to be any measurable change to my lumpy boob in any shorter time than that and even two months might not be enough time to see a change. She did, however give me her secretary’s direct line so I can call if I think it’s getting worse.

I also told her that my poor boob is, at best, uncomfortable and, at worst, painful. She said “That’s unusual” but didn’t offer any remedy. Paracetamol makes no difference and I’m not meant to take anti-inflammatories with the bonefos I’m on (to strengthen my bones). So “my” Jane said to see my GP and get presciption-strength painkillers. I’ve made an appointment and see the “regular” female GP at my surgery. This is also an opportunity for me to see if I’m happy to stay at that surgery, or need to move elsewhere to ensure I have a doc I can work with/talk to/be properly supported by.

I’ve asked Dr Kim to go through ALL the results of ALL the tests I’ve had, once she’s got them from Swindon, and I’ll push for that to happen as soon as she has those results, rather than wait until September to find out what has been known since May/June – by which time, hopefully, there will have been a change for the better, anyway!

I didn’t really take to “new” Jane; she told Cheshire Jane she’d see me when I saw Dr Kim, but made no effort to (OK, something could have come up, but she could have called, left a message, made an effort!);  the message she left on my home phone said she knew I’d seen Dr Kim the day before, but when she got hold of me, on my mobile, she claimed she didn’t know I’d already seen her; she seems to be of the “Here, have a hanky; we’ve a hospice bed waiting” brigade, and I really have no time for that attitude, not yet and hopefully not for a long time; and why do I still only have Cheshire Jane fighting my corner, co-ordinating my care, making things happen for me? Why do I still feel abandoned and a waste of the NHS’s time and money! Why is Cheshire Jane the only person saying I can LIVE with cancer?

I know I can’t win the war, but I can win every battle except the last. But the first battle really shouldn’t be just finding the right support for me. Hell’s bells; I’m a former Drama teacher who now plays out on her bike for a living – my specialist subjects are 19th century Russian theatre and how to get kids on bikes! And the disc world novels of Terry Pratchett. And Georgette Heyer’s hysterical romances. NOT researching treatment and support services for advanced breast cancer! There are hospitals full of people in white coats with letters after their names to do that!

I wish the do-gooders would stop trying to nail down the coffin lid; I’m alive and kicking – kicking against the pricks. And I’ll keep kicking until those pricks get the message and get out of my way!

So there!

Addendum

Just a small point but…

If you don’t comment then I don’t know you’re reading this. Just saying, is all. If you don’t know what to say; tell me a joke!

I’m not dead yet!

Another long and frustrating week of nothing much happening: No contact at all from the breast care team at Great Western Hospital; no calls from lovely Jane; and a missed call from Prospect Nurse Sue – hmmm, that sounds like lots going on! But it’s left me feeling abandoned by the NHS. Again.

Have I told you about my spotty liver? Back in ‘04, when I was first diagnosed, I had the standard tests to see the extent of the cancer. The CT scan revealed a “spot” on my liver – Dr Burt was pretty sure it wasn’t cancer but I had an ultasound to look more closely, just to be sure. He still didn’t think it was cancer. Just to double check, I had another CT scan a year later – after chemo – and, yup, the spot was still there, doing nothing. This time around, the CT scan once again revealed this spot on my liver. I’d flagged it up to Dr Burt to flag it up to Dr C., so it would neither be dismissed, if in fact it was now doing something different, nor would I be panicked if it had remained just a spot. Dr C. decided the scans from Cheshire weren’t clear enough to tell if the spot had changed or not and ordered an ultrasound. To be fair, I think I’d have been disappointed if he hadn’t wanted to double check. I was scanned by the consultant radiologist and he couldn’t even see the spot with the ultrasound (or should that be “hear” the spot?!). He was ready to dismiss it as nothing, until I said the cancer had spread and THEN he said the “balance of probability” was it IS cancer. Still with me?! And then I went up to see Dr Burt again, 10 days ago, and he is still adamant it’s NOT cancer – “98% certain” was his line. It’s just a spot; I’ve probably always had it. I’m happy to go with Dr Burt’s diagnosis, not only because it’s much better news, but also because there are no other signs of my liver being affected.

BUT – Radiologist will have told Dr C. it’s cancer. That would have been 3 weeks ago but Dr C. clearly doesn’t see a need to go over the implications of this with me, even though cancer in a major organ, such as the liver, makes quite a difference to how sick I am. I also had blood tests 4 weeks ago that could show anaemia, calcaemia (calcium leaking from my bones into the blood), how well or not my liver is functioning, and a load of other stuff I don’t know. Again, the results of these tests have not been communicated to me. And I STILL don’t know my HER2 status (whether herceptin might be of use to me).

As far as the breast care team at Great Western are concerned, I started the zoladex 4 weeks ago, and therefore the arimidex 2 weeks ago – I actually delayed things for a couple of weeks, as I like to know WHY I should be taking something and just WHAT it does to me and HOW it helps. I’m funny like that! – No-one has called to see how I’ve got on with that. This is NOT what I would have expected, given my experience of the breast care team in Cheshire.

So, all in all, I’m frustrated that there’s still so much I haven’t been told. But I can dismiss the lack of support given by Great Western because I sort of have support elsewhere. Sort of.

I had hoped for better with Prospect nurse Sue – she seemed rather more on the ball and I felt she was making an effort to know me, rather than just see me as another patient. I’m not good at asking for help and was aware, by the time I saw her 2 weeks ago, that I do need some support – communication being the main thing – so when she offered to call in a couple of weeks to see how I was I said “yes”. I told her I would be at work so she should call my mobile number and I made sure she had it. She called, as promised. She called my home number – I was at work! She left a message saying if I hadn’t called back by 5, she’d assume all was well. I didn’t get home, and so get the nmessage, until after 5! I actually could have done with talking to her, not about anything in particular just, you know, talking. And now she’s on holiday for a fortnight. And that’s where my frustration starts – why could she not remember to call the right number? Why, having not been able to reach me on one number, did she not try another? Why this assumption that, in the 2 weeks since she saw me, I would suddenly be too ill to work?! It’s hard enough to have cancer. It’s bloody hard to know I’m incurable. But it’s really taking the piss to not bother to give me any meaningful support. I’ve got to get my head round being incurable; never having children; dying alone and in debt and she can’t even phone the right number! Grrrr! OK, that’s how I felt all through Friday evening and all day Saturday. It’s now Sunday and I’ve calmed down. But it IS annoying!

So that was a bit of a let-down from Sue. Their (Prospect hospice) Therapy Co-ordinator is meant to be setting up some aromatherapy for me (bit of lavender oil; well-known cure for cancer!) but can’t find a therapist that doesn’t work office hours. Which lead to the following rant:

I’m still not getting the right kind of support; I’m just too well! It’s very frustrating, actually, to be told “they” (the health/social care professionals) are there to help me maintain a good quality of life, but my quality of life is actually above what they can offer so they can’t actually support me! There are no services for people who are at work all day – like we ‘re all ok about having cancer and being incurable and all the add-ons of the side effects of the various treatments, and holding down a full-time job! Easy! Dr Burt and Jane were very insistent that I should make full use of the support offered; must be sure to make those connections with the breast care team; practice nurse; GP; etc – all the people who will be looking after me over the next (hopefully) several years. I know now is one of the times I need them most; now; still newly diagnosed, still establishing treatment, still coming to terms with it all – and I can’t access anyone or anything! All the support groups (not that I want to sit around with a bunch of hopeless whingers, but…!); complementary and occupational therapies; all the advice clinics and drop-in centres; all the support I’m meant to be tapping into – operates 9-5, Mon-Fri, when I’m at work!! Where’s the support for all the other people just like me?! Why is the focus on helping people die from cancer, and not on helping them live with it?

Again, I’ve calmed down a bit now, but this is how I’ve felt, much of the time, since being told that the cancer’s back and the implications of it having spread beyond the breast, some 6 weeks ago.

And my final frustration comes from the lovely Jane – she promised to call the breast care team at Cheltenham – where I’m going to be treated  – to get the low-down on how they work; to try and ensure I’d have a breast care nurse in with me when I see Dr Kim so the nurse can go over what Dr Kim says to me afterwards; to help establish that all-important relationship so I feel there really is someone I can call for help, advice, support, whatever. But Jane hasn’t called. She only works 3 days a week and one of those days is a Clinic day leaving just 2 days when she is likely to have the time to call. So it’s likely to be Thursday or Friday next week before I hear from her. So that will be 2 weeks of nothing and no-one telling me what the hell is going on! Can you sense my frustration creeping back in?!

Being left so very alone by the only people who can actually tell me just how well or ill I really am is not working for me. Too much time and too little knowledge or information leads to unrestrained googling. Unclear or partial results from tests allows me to hope, where there probably is no room for hope. Throw away comments without qualification lead to fear. Lack of communication prevents me from forming relationships that I need to cope with this.

Physically, I’m still just as well as I’ve been for the last 4 years. Before that I was unfit and overweight. Now I’m active and, apart from the cancer, fit and well. Mentally/psychologically, I’m not so great actually – not so much from the cancer, more from the assumption made by health/social care professionals that I’m NOT fit and well or, if I am, I don’t need them. I do need them but…

I’m not dead yet!!