The first clue probably came in the last round of chemo when, for the first time, Ruth actually admitted to feeling tired for a couple of days after the chemo sessions. In between the chemo though Ruth still lived life to the full and joined her extended family for a wedding in June where she danced the night away. At the back end of July we found that the spot on her liver was now a lot more than just a spot; it was now a full-blown secondary cancer site. This was the reason for her tiredness, not the chemotherapy.

At a family conference early in August we planned the coming months. Ruth wanted to see her birthday, Christmas maybe even next spring – always planning, always fighting. At the end of August Ruth saw her “wonderful Dr Charlie” for the last time and was discharged from the Royal Marsden and passed over to palliative care.

On Tuesday of last week I joined Ruth for a case conference with Social Services, Prospect House (who were providing the palliative care) and Sustrans to discuss how we could meet her objectives of staying independent, staying at home and continuing to work for as long as possible. On Wednesday she went into hospital for what we expected to be a routine drain of Ascites Fluid that had built up as a result of her declining liver function. The drain could not be done because Ruth’s blood was not clotting; the blood wasn’t clotting because Ruth’s bone marrow wasn’t producing platelets; which was in turn because the cancer had hit the bone marrow too. Platelet infusions and vitamin K followed but as the medical team checked the blood on Thursday we found that Ruth’s kidneys were no longer doing their job.

On Friday we finally had the drain, but there was no fluid to find; all the swelling was a combination of tumour, constipation and inflammation. Ruth hated being in hospital; we always knew she would, and we managed to escape each day to push her outside for an “adventure”. We revised our plans and made sure Ruth’s wish to return home was met and on Monday lunchtime we got her home. There in her own bedroom to the sound of the wind-chimes in her garden Ruth visibly relaxed and peacefully died with family and friends around her.

Ruth had fought and raged to make living with cancer just a normal every-day activity; no drama, no tragedy – just something to get on with. She had continued to work, continued to go out, continued to do everything she always had done. Ruth’s employer, Sustrans, were an absolute model employer in finding every way they could to support her. Social Services and Medical Care did all they could; sometimes they failed to deliver, not through any lack of good intention but through chronic under-funding and lack of resources.

Ruth died in the end but the cancer did not win.

Multiple Varieties of Positions?

Mixed Veg and Protein?

Massive Vermillion Pig?

Actually it’s Mytomycin, Vinblastine and Platinum – there; that made much more sense, didn’t it?! That’s the chemo I’m on this time: 3 in 1, mega-bitch of a doings! Well, not that bad – but then I would say that! It takes 8-12 hours (depending on efficiency of staff and if they think you have anything better to do than hang around hospitals, hooked up to a drip; mostly because of the platinum. Platinum can damage the kidneys so it can’t be allowed to rest there, consequently I start with the most enormous bag of hydration you have ever seen and, as if that wasn’t enough to get your kidneys to flush through, I get a couple of diuretics, too! After that, I’m up and down, to the loo, like whore’s knickers! After that I get a shot of steroid (Boo! Hiss!); a shot of the Mytomycin; and a shot of Ondansetron (anti-chucking up everywhere). Then it’s the Vinblastine – it’s derived from periwinkles, you know; how pretty! – and then the Cisplatin (the platinum bit). That one has to be over 4 hours, with a bag of something else. And then we finish with ANOTHER bag of hydration AND a jug of water, to drink!

For the first cycle, I got it all overnight, on the ward but it was such an horrendous experience I stamped my foot and refuse to be an in-patient, ever again. More of that when the formal complaint I made is resolved.

So for cycle 2 and today’s cycle (3), and all subsequent doses (a max of 6), I’m on the day unit, where staff are pleasant and supportive, of patients and each other, and the atmosphere is positive.

As things stand, in terms of drugs available, this is my last chemo option so the last treatment that can control the spread of the cancer. After this all we’ll be able to do is control the pain. Yesterday’s CT showed the chemo is reducing the breast mass and lymph glands; the liver was stable with some slight improvement in a couple of the lesions; and the tumour markers were, strangely, going up – but, even more strangely, this was seen as confirmation the treatment was working, just as tumour markers dropping does! Go figure. So the worst, worse case scenario isn’t happening. The next worst case scenario is that the cancer will start to progress as soon as the chemo stops. This would see my health declining and the final curtain starting to drop. How fast? Well, Mum went from well to dead in about 8 weeks. That’s the worse case scenario. Best case? The ultimate “best case” would be Miracle Cure, obviously! So best case, tempered with reality is: The disease remains stable for a period, after the end of chemo – other chemo’s have given me 6-8 months of stable disease – then slow progression before the disease even starts to impact on my health; then slow decline before Goodnight, Vienna. And, if I can string that out long enough, another chemo will become available. There is one, Halaven, that’s been released for use, looked very good in trials, and is now making its slow progress through approval by NICE so I think it’s not unreasonable to think I can stick around long enough to benefit from it. [Update: Saw in the news today Halaven is going to NICE next month. Let’s hope they approve it for use – it’s cost is comparative to other modern drugs and it’s efficacy greater so…..]

And then there are trials: When all other treatment options have been exhausted these become the bright hope and shining light for people in my position! I am very glad my consultant, the ever-lovely Dr Charlie, is involved in research so must be open to putting patients in trials. As a researcher he needs those patients and, as a patient, I need those drugs! There is no danger; by the time drugs are being trialled on patients they have already passed three levels of testing so it’s not like swigging from a bottle marked with a skull and crossbones and hoping for the best! In fact, even trials on people go through various levels; starting with a few people and ending with the big trials, which need a large sample group to give validity to the findings. And I think patients are put forward in reverse order, as it were; you start on an end-stage trial which they really already know will work and then work backwards down to the ones that worked in the lab and on animals and they know why!

My other reason for being willing to take part in trials is: I paid for it! Well, helped pay for it, with my Race for Life! My 10km was pleasantly uneventful: My hips started to ache a bit around 3 km but that passed as the bits of my quads and glutes I don’t use for cycling started to complain, at about 5km. But by then I was into my stride and had found someone to talk to so I just carried on strolling around LydiardPark. My friend Kathryn ran the 10km (the mad fool!) then walked back to find me and finished a second time – ok; she cut off the last corner to get me a restorative bacon bap – but she did an extra 5km walk, on top of her 10km run! She also directed her friends and family to my sponsor page and helped boost the coffers well over my £1,000 target. As of today, we have raised £1,245, plus GiftAid, and there are still some people who I know will be contributing so I am hoping to top out at £1,500. So I think that entitles me to expect Cancer Research UKto develop a treatment, if not a cure, for me by the end of summer! Actually, I think it’d probably pay for a research lab and staff for about 20 minutes! But I’m pretty chuffed with my achievement. The sponsor page stays open until, I think July, but why wait? If you haven’t done so already, hop on over to http://raceforlifesponsorme.org/ruthjames1310

It’s now tomorrow – I’m tired and constipated (TMI? Oops!) but otherwise fine. My Social Wanker didn’t turn up for our appointment but the woman that manages Direct Payments has found a new agency to do my 6 hours a week: Cleaning; “heavy” laundry ie sheets and towels; and food prep during chemo week so I don’t have to live off pierce and ping or reheated left-overs from last week. With an option to add in more as/when the disease progresses and I need more support.

And I’m off chemo until at least May 3rd (date of next scan), maybe longer (well, you never know!). Even if I am back on chemo, following the next scan, it’ll still be early days when I do the Race so shouldn’t be affecting me too much.

And who knows how much longer I’ll be able to take part in the Race for Life? So, while I can, it seems a good idea to do so; raise money for Cancer Research UK, so they can develop more treatments, so I can keep doing the Race for Life and so on and so on, ad lib to fade…

I’ll be doing it alone – no-one else seems much interested in walking with me or even spending a morning at the park and waving me off or welcoming me back home. Would be nice though; it’s a bit dull and something of a let down to do something that is, when all’s said and done, a challenge for me and not have anyone cheering, smiling, waving as I mooch along for 2 hours. But that just takes me back to the points I made in my January post; nothing has changed since then. Nothing will change, I don’t suppose. I’m just not the kind of person that anyone thinks to do favours for or give support to. Ah well.

So if  I can walk 10km with holes in my bones, spots on my liver and active breast cancer, and without champions, what can you do?

http://www.raceforlifesponsorme.org/ruthjames1310

The breast is uncomfortable, misshapen, unsightly (not that anyone shows any desire to sight it, but you never know; I might want to tit-moon passing motorists!) and, at times, painful.

I don’t know if the involvement of the lymph is responsible for my tiredness and low energy or if that’s just the result of trying to get bike-fit, after a Winter of not cycling. Maybe 5 assemblies in one day would be enough to tire anyone….

And some of the liver lesions are slightly larger. But only slightly. And liver function remains normal, which has been used to prove both that it is cancer and that it isn’t and that it is and isn’t a concern…!

I didn’t see Dr Charlie, for the results – first time, I think, I’ve had results from someone else. I got Dr Hairy Arms, instead, who I’ve met before. And although I saw Anne-Marie in the corridor, and had a quick word, she wasn’t in with me. Which I’m more and more peeved about, the more I think about it. Dr Hairy Arms’ response to the CT was, still, to wait and see – do another CT in 8 weeks; judge the speed of the progression; use that to decide when to start chemo. Of course, I’m happy to stay off treatment but….with three sites of cancer involvement showing renewed activity and the tumour markers continuing to go up, maybe I should be biting the bullet and starting chemo sooner rather than later…

We had a chat about what chemotherapies are left; there’s the vinca alkaloids, like Vinorelbine, which Dr Charlie has mentioned before; there’s also platinum-based ones, though the side effects are pretty horrid for that one; and there’s one based on sea sponge that’s in late stage trials and looking very promising. And then there’s the new, non-chemo, targeted therapies which Dr Charlie’s pals, over in Research, are busy working on.

We did also touch on treatments to improve the breast – either to gain better control of the disease there or just from a cosmetic point of view. He didn’t really give any options there – partly, I feel, because he doesn’t know me as well, or know the details of my medical history, as Dr Charlie does; that I mentioned it at all indicates it bothers me quite a lot actually. And with Ann-Marie not present I’ll have to have that conversation again, with Dr Charlie, when I see him next – probably when I go for my next bisphosphonate next month.

I’ve always felt my mission/challenge/requirement is to stay well enough, for long enough, to benefit from the new therapies which will take over from chemo and push breast cancer firmly into the status of chronic disease and become something you die with, rather than something you die from. And six and a half years, without a single day’s sickness (well; more or less – no significant illness anyway) is pretty good going – but we could be talking 10, 15,  20 years before these new treatments are mainstream and fully developed. Which might be rather more of a challenge…

In other news, Mrs Hairylip, the Social Wanker, did a new assessment with me – the format has been changed and any Assessments on file are now Read Only so the errors and inconsistencies can’t be corrected. And anyway, they’ve got a different form to use now. [Insert eye-roll here!] So we did a new assessment, which is designed for frail old ladies and lists various daily activities and asks how often you need help with them and who gives that help. There’s a multi-guess tick box for responses which go from Never, through Sometimes and Frequently, to Very Often – all a bit vague and woolly but we ticked “C – Often” for most of the answers and “None” for Support (as in how much I get – pretty tricky for my sister to pop down from Dundee to cook dinner or my brother to fly back from wherever in the world he is this week to drive me to an appointment…!). Then Mrs Hairylip had a similar form to fill in before the responses got put into a computer and the computer said……

….I shouldn’t be getting the two hours a week support I currently have: I should have SIX hours a week! We’re still working out the phrasing of what that support should be; I’ll get it as Direct Payments but the DP request needs to say what it’s for. I’m trying to steer Social Services into keeping the wording quite general – Mrs Hairylip was all for “To pay for a Driver when chemo makes me tired” which is far too specific and doesn’t allow for the cancer itself to make me ill and incapable! I’m not sure how I’d set about finding and retaining a cleaner/laundry person/driver/gardener/cook that I might want at less than a day’s notice and need for a couple of days or a couple of weeks, or a month or two, or forever……I’ve found one potential company and they might know of others. But some indication, at least, that there is a modicum of understanding that I do actually have a need for support, which I currently do not receive – which sets things up to allow for an increase in that need, as the cancer progresses and my condition worsens.

Mrs Hairylip’s suggestion shows she, like most people, is still rather stuck in this mind-set of “chemo makes you ill” but that cancer doesn’t, or at least isn’t making me ill, because I’m not thin and drawn and grey (or yellow) and bald – therefore only treatment makes me ill, and not the disease I’m being treated for – err, no! And all people with cancer are old (or under 6 and cute) and too old/ill to work – so all alternative therapies/support groups/etc are at times to suit them and tough luck if you’re still struggling to stay in work; you’ll have to do that on your own, without any support! But I’ve banged on about that enough and it won’t ever change until I, and my like, change it but we’re all too busy at work to instigate those changes…

And that’s about it, from my corner of Cancer World – the disease is slowly progressing; I’m mostly alright; and I’m still standing.

“But what about chemo?”, I hear you say – “You’ve had that before and tolerate it well; can’t you just keep having chemo?” No. No, I can’t: Let me explain about chemo:

Chemotherapy is not one drug; referring to “chemo” is a bit like referring to “antibiotics”. There is a range of chemo drugs, with a range of efficacies against a range of cancers, still a bit like antibiotics; different drugs for different infections. But, unlike antibiotics, once a chemo drug has been used and the cancer has started to progress again, that drug can’t be used again as it’s no longer effective against that cancer. And I’m down to just about the last of the chemo options. There is definitely one more I can try and there might be another. And then there are no more; chemo is off the list of options.  Whatever chemos are currently left may or may not be effective for me and the specific cancer I have. Or the cancers I have; we have, actually, pretty well established that the cancer has mutated, as it has spread to different organs/areas, ads not all the treatments I have had have worked on all areas of cancer involvement so the next treatment might not either. I may or may not tolerate the next chemo – just because I have tolerated the previous three chemotherapies has no bearing on whether I will tolerate the next one; to suggest otherwise would be like comparing apples to oranges and a meaningless exercise; kind of like saying “But you like cucumber therefore you will like football” (actually I don’t like either but that’s beside the point!).

Once the final chemo(s) has been tried and the cancer has progressed – and it will progress; maybe sooner, maybe later, but inevitably – there might be one or two other therapies to try. They won’t be as effective as chemotherapy; chemo is used because chemo works. Once chemo options are exhausted only then are other, less effective, therapies tried. After that, I might be an appropriate candidate for drug trials – if there happens to be  a trial for oestrogen/progesterone receptor positive, HER2 negative, secondary breast cancer which has already been treated with AC chemo, Taxane chemo, Capecitabine and Vinca chemo (that’s the one left). So that’s pretty bloody specific!

And then I get sick and then I die.

And I’m tired of not being believed when I say that; of being dismissed as a silly attention-seeking drama queen; of being told not to be ridiculous. And not getting any support: Because I look well. I look normal. I don’t look, or act, or talk the way a sick person is meant to. So I’m left to face this alone. No-one drives me to the hospital when I have an appointment, not even when I feel bloody ropey; mostly no-one knows when I have an appointment or calls to see how I got on, when they do know. No-one cooks or shops for me, when the disease or the treatment means I’m too tired to do it myself. No-one calls round, to see how I am. Ever. Not family; not Social Services. I’m not anyone’s care or responsibility. I’m not a priority with anyone. There is no-one I can call for help or turn to for comfort. I have a psychologist I see regularly but she’s not available 24/7 and I see her maybe once a month. So that’s once a month I can unload how I feel. To someone who is paid to listen.

And I know there could well be people mentally shouting at their computer screen now saying “Oh but I care Ruth; call me” – But that’s the point: I have to call you – when did you last call me? When did you last visit me? Have you ever visited me? If I want to see you; I have to come to you. I’VE GOT BLOODY CANCER!!! And you don’t call or visit or give any practical or emotional support. If I want to see you; I have to travel to see you. I  won’t be well enough to travel soon, probably within the next year, what happens then? I don’t see you? If I do have surgery for my hips, I don’t expect to have any visitors while I’m in hospital. Because no-one will travel to see me. Not now I’m well; not when I’m in hospital; will they even manage it when I’m dying?

And now I’m, no doubt, meant to do something to make that different. Not you.

Maybe I’ll get a little flurry of guilty phone calls. And then back to nothing as you mentally pat yourselves on the back and tick off that “duty”, putting yourself firmly on the right hand; a sheep not a goat. And if you get the reference, and can maybe even quote me chapter and verse, then even more shame on you. Doing it once, because it’s something you “should” do, or want to be seen to be doing it, is worse than not doing it at all. I’m clearly not the greatest so maybe I’m the least….

Or maybe you don’t think I mean you.

Or maybe you don’t think you need to; someone else will. Perhaps you’d like to name them…

Oh and no, this isn’t a response to bad news, though I won’t deny I’ve been bitten by the Black Dog. Actually the most recent scans were quite positive: The cancer started to progress in the breast about a week before Christmas – I could see and feel a deterioration there. I had a scheduled CT scan, the first week of January, which confirmed that progress and also showed a continued progress with that slightly enlarged lymph gland I’ve mentioned previously, and blood tests show tumour markers continue to rise. So the cancer is progressing, don’t be in any doubt about that. BUT the disease in the liver and bone remain stable so we can delay that next, possibly last, chemo; waiting until it will make most impact, a bit like playing your ace in a game of cards. So the news is, comparatively , good. Or at least not bad. Or not very bad. Not the worst it could be, certainly.

And I’m still able to work – but when the choice is “Work” or “Starve” then there isn’t really a choice, is there! Although I am a victim of that Comprehensive Spending Review, back in October, and could be down to my last 10 weeks of work, as 2/3 of the funding for my post disappear at the end of March. I am  actively seeking alternative employment, including teaching posts. Not that I want to go back to teaching and I wouldn’t be happy, but then I wouldn’t be happy with no job, no income and overwhelming financial worries, either so it’s the Devil or the Deep Blue Sea!

I still live independently but then, again, there is no option on that so it’s better to believe it’s what I want. Better for me, as well as you. A cup of tea made by someone else, once in a while, would be nice though….

So no change from the last post. Or the one before. Or the one before that. Except my change in tone – which is maybe why no-one seems to think that I’m ill; because I’ve managed to stay remarkably positive for the last three years. I’m the victim of my own success! Oh the irony! By living with cancer I seem to have accidentally convinced you all I’m not going to die of it. And that I can do it alone and you don’t need to do so much as offer me a cup of tea. And no; I don’t want you to start to hover over me and do everything for me, or phoning every five minutes to see how I am; I’d be cursing you black and blue before the week was out! But I would like you to think if you could, should or want to support me and how you could do that.

And if not you, then who?

I understand and accept I’m not the most  important person in your life; that you have other demands on your time; but if you’re reading this I must mean something to you, even if it is as the least of these…

At the team meeting, that precedes clinic, I was held up as an example of the benefits of a positive attitude. Coincidentally, I had just had a similar conversation with one of the IV nurses, as I got my Zometa: I would say the greatest challenge I’ve had – and, having just “come out” to my colleagues, will continue to have – is overcoming other people’s pre-conceived ideas about cancer. The overwhelming belief is that anyone, anyone, with cancer – even if they’re not on chemo – is that they are ill; tired; weak; sickly. And yet the reason cancer can take such a  hold is because the body doesn’t recognise it as “wrong” and so the immune system doesn’t attack it. Even on chemo; whilst it is still a sledge hammer to crack a nut, chemotherapy has come a long, long way and is far more refined than it was even 5, 10 years ago. And additional treatments, to minimise the adverse side-effects, are increasingly efficacious. Being sickly isn’t compulsory!

And yet no-one tells you this. Hospital staff, I know, have a legal obligation to tell patients of possible side effects. Let’s just think about that, possible. Not definite, not compulsory, not obligatory. They don’t, in my experience, make it known that some people don’t have any side effects, or so few that they can carry on living a normal life. I really don’t believe I am particularly strange or unusual and I’m definitely not amazingly fit or physically strong. I haven’t battled against the odds and laughed in the face of adversity to get to work; I’ve just done whatever I’ve felt able to do – and that’s been everything I would normally have done! I maybe do have a fairly over-developed work ethic, but no more than my siblings or the vast majority of my friends and colleagues: I am employed to do a job; they pay me to do it; therefore I have a moral and contractual obligation to get up every day and do it, unless there is very good reason not to. And there just hasn’t been that reason.

Plus, as a singleton and living alone as I do, I don’t have the luxury – if I did take time off sick I’d still have to cook and shop and answer the phone. And if I’m well enough to do that, I’m probably well enough to go to work. If I did have the option, would I take it? Well, maybe be – because that outside attitude to cancer is so strong. Think of the language used to describe people with cancer, “victim” – “cancer victim”. What image does that word “victim” conjure up? Someone is unable to defend themself; unable to stand up for themself; fend for themself; do any damned thing for themself! Not how I would choose to describe myself, and probably not how a lot of people with cancer would like to be described. But it is very hard not to be forced into that behaviour, by well-meaning but ill-informed people. Or well-meaning and very well-informed doctors and nurses! I wonder how much of a difference there would be if they changed the language they used and the emphasis they out on possible side effects. If, instead of saying “These are the very common side-effects; these are the fairly common; these are the occasional ones….etc” they included the option to be well; to not really have any side effects; to emphasis the ability to be well and live with cancer, not just die from it.

If 50% of patients need to go back on chemotherapy within three months of finishing Docetaxel, then 50% DON’T. Let’s celebrate the *other* 50%

Well, I finished chemo with the 6th cycle -Dr Charlie convinced me there was nothing to be gained from further cycles: I had the CT after the 6th one and that showed things still to be stable so, apart from the Zoledronic Acid, that was it for treatment, for the time being.

I’d arranged with work to take Extended Leave, once treatment was over, to have some proper convalescence time, as any time off chemo is just a lull before I’m back on chemo. Not Sick Leave, so much as Well Leave! 6 weeks of no work. So Dr Charlie, and Diana, awarded me time off from them too – 6 weeks of no work and no hospitals! Instead I had time to remember what it is a I do, when I’m not going to work/hospital all the time!

So I went to the Dentist; visited friends and family; learnt to swim front crawl; trashed my garden; and generally pottered about, being a Lady of Leisure. And now that time is up; I’m back to the hospital this week and return to work next week.

Dr Charlie has said that, typically, the chemo I had (Taxotere, AKA Docetaxel) gets patients 3-6 months, with 50% needing to go back on treatment at 3 months. I have every intention of being in the “other” 50% but, it’s not really in my control. I don’t feel ill, but then I never have, so that’s no indication of the cancer progressing. The breast hasn’t changed, and that’s generally a good indicator but we know the cancer there is slightly different to the cancer in the liver. My hips have hurt at times, but there’s always been good reason for that: driving to Dundee and back; cycling 20 miles, 10 of it carrying 15lbs of apples; hauling paving slabs around the garden (don’t ask!). And so on – but I’m very good at finding non-cancer reasons for cancer things. So we’ll just have to wait for the CT.

I’ve enjoyed my time off – at the start I wondered if 6 weeks was long enough but also worried that I wouldn’t know what to do with myself. The first week I was really active, just out of the momentum of my usual working style, but then the reality kicked in and I finally relaxed and allowed myself to rest. The last week or two I’ve been sort of sneaking back to work, but, all in all, 6 weeks was about right. I used a combination of Sick and Annual Leave; I used all my remaining Annual, but our Leave year starts in Jan, with my Christmas Leave already booked; and I still have a couple of weeks Sick Leave in hand – we get 8 weeks over any given 12 month period, which is a bit sneaky and a bit hard to work out, but I’m pretty sure I’ve still got some left, if I need it.

Just before I went on Leave I had my 2nd Ortho appt - I saw Hilarious Sweary Man this time – now, as a public school girl, I can cope with “bloody arse bollocks” in every sentence, but I imagine some of his patients would be shocked! We repeated the x-rays and found no change. None. At all. So my crumbly bones are looking pretty stable. The outer cortex of the bone isn’t compromised at all so, despite the whacking great holes, it seems my hips and pelvis are relatively stable. I see him again in Dec.

And the Useless Pillock Social worker called. First I had to call her, to point out she’d done my assessment a month ago and isn’t it about time she wrote it up?! She claimed she had, just not sent it – so I patronised her for 10 minutes or so and got my Assessment and Care Plan 2 days later. Still some errors but starting to look almost relevant. then she called me yesterday, aware it’s been a while and nothing had happened regarding housing and could she come out and see me? I pointed out we do, actually, have an appointment in 3 weeks and would that do? Good to see she’s fully up to speed! Oh well, at least there’s some indication she trying! I can’t say as I particularly took to her myself but my cat liked her so maybe I should reserve judgment.

And that’s about it, from the House of Ruth: I have vague plans for a big, exotic holiday before treatment/cancer really scuppers things. I can’t afford it but you’d be amazed at the wild and wonderful, esoteric charities you can apply to for funds for all sorts of things! And being middle class, of good repute, of the professional classes, a former teacher, over 40 and single ticks an awful lot of their boxes!

Then, at Cycle 5, I saw Dr Steph (1st reserve) – I asked if there would be any grounds on which we would continue beyond 6 cycles: I have been receiving a lower-that-average dose of Docetaxel so yes, was her answer, we might go on for an extra 2 cycles. Then, on Cycle 6 I saw….Dr Steph again. So for half (assuming we stopped at 6 cycles) my treatment I’d not seen my consultant. Nor had I seen my keyworker nurse, or, indeed, any nurse! So I had a hissy fit! I expressed concern that we had lost all continuity of care and I had lost all support. I put it down to the fact that friends had come with me, while I’ve been on chemo so there was no perceived need for a nurse to ride shotgun on consultations. Except the friends, kind souls that they are, were there to keep me company – they are in no position to give me any advice on medical issues, or to raise concerns I might have as it’s unlikely I’d have mentioned them to my friends – not because I don’t talk to them but because the friends live and work some distance away; I’m not in daily or even weekly contact with them so there would be no opportunity to discuss any little niggling problem I might want to raise with my nurse. That week’s friend, Gayle, played a blinder in backing me up and doing the Deadly Calm voice until I got my way!

Dr Steph (1st reserve) gave the usually bullshit about “Under-staffed; lack of resources; can’t expect to see the same consultant, blah, blah, blah” But I wasn’t having that and continued to create until a nursey came in; admitted Anne-Marie had asked to be called, when I came through, and admitted they hadn’t been as conscientious as maybe they should. Then Anne-Marie came in and basically apologised and we were able to find a solution and we’re all friends again now.

And Dr Charlie came to find me in IV – he was dead against any extra cycles, rather proving my point about losing the continuity of care, as it seemed Dr Steph hadn’t discussed the possibility with him. He also assumed I’d be feeling really ill by that point and not want to go on, anyway. I told him I’d just walked 10km for the Race for Life – further proving that continuity of care had been lost! So his final word was to see what the next CT showed and decide then.

That CT is in a few days’ time with the scan in the morning and the results in the afternoon. If there is a clear improvement in the liver then I’ll do chemo Cycle 7 the next day with the absolute final one towards the end of September. However, Dr Charlie thinks it unlikely there will be any further response, as the last scan just showed things to be “stable”.

With the agreement of work, I’ll then take 3 weeks of Sick Leave, plus 3 weeks of Annual Leave and have a good bit of R&R because any time off chemo is just waiting time until I’m back on chemo. The cancer will start to progress again, probably within a few months. We’ve now used up the options of AC chemo (the first one I had, 6 years ago), Capecitabine and the Taxanes. There are a few more to try and there are a few interesting things coming through in research, but the list of treatment options is getting shorter. I got longer than expected with the Cape and I plan to do the same with this, and every future chemo, so I’m not feeling despondent. In fact I continue to feel remarkably well! The fatigue generally associated with chemo finally hit with cycle 6 and I did feel totally wiped out for 2 or 3 weeks but I’m well over that now and, just before Cycle 6, I did mange my 10km for the Race for Life. But I know I’m not as fit as I could be so my time off will be a chance for me to address this and get myself fighting fit!

In other news: Rob and I finally met with Adult Social Care, to address my concerns, or rather formal complaint. Some very interesting things came out of that meeting – like they never received my complaint, only the copy I sent to my MP; they weren’t sure if I’d ever been formally assessed; my version of events didn’t match my Care Manager’s, although that didn’t really surprise me. The outcome of that meeting was that, 12 months after first contacting Adult Social Care, we should start all over again, and make sure all correct procedures are followed this time!

That meeting is this afternoon and, to be quite honest, I don’t hold out much hope of it really achieving very much! I have my list of what I would like – I’m applying the technique I’ve found works best for me: the method of “By the end of this meeting I would like….” So I’m clear what I would like to achieve and so lessen the chances of abject disappointment.

I’ve got a new Care Manager and she’ll be accompanied by an Occupational Therapist. And I’m really glad that a) it’s tipping down as the tiled floor in the entrance/kitchen is really slippery when wet and b) it’s yoga tonight! I’ll be well up for a bit of calm breathing by then!

So it’s back to Wait and See; see if the liver shows further response; see if Social Care can or do care; see if I remain stable for a month, two months, three months….; wait and see until the cancer progresses and I start another treatment. Plus ca change, plus ca meme chose: The more things change, the more they stay the same!

Addendum: Sponsor page remains live until Sept. 11th http://www.raceforlifesponsorme.org/ruthajames

Mostly it’s long and dull with a lot of hanging around and a certain amount of me getting increasingly grumpy – there has been more than one occasion when Ms James; scary Teacher comes out to play! I start with bloods, as early as I can be bothered to get to the Marsden, then Clinic with Dr Charlie, or Not-Dr Charlie, aka Dr Steph, or – on one occasion - Random Other Doctor. My blood count is always good, staying well within the “normal” range; tumour markers have been dropping; and no other blood chemistry has been worth a mention. Then I take my chart off up to IV where I swap it for a bleeper and then the hanging about begins – the record, so far, has been a 5 hour wait, as my chemo hadn’t been pre-ordered the day before and someone had to nip down to Boots and get a couple of bottles….or something like that! On my last visit instead of a full blood test being completed within 30 or 40 minutes they were using a new machine in haemotology and it took four hours, just for my bloods to come through; only then can the chemo be made it. For 3 out of my 4 chemo trips I have been the last patient in IV – I mean the very last; the nurses have gone home and the cleaners are sweeping the floor around me!

Once I’ve been bleeped by IV (and I’ve “bleeped” at anyone who crosses me!) I go up and get my first cold cap, with my Zometa/Zoledronic Acid(the bisphosphonate, for my bones) and a steroid injection (to guard against an allergic reaction to the chemo). The steroid has a rather strange effect; the nurses say it gives you ” a prickly bottom” but it’s not your bottom that itches and tingles, it’s rather further forward! Not a very pleasant experience, but it’s over quite quickly. Those two bits of treatment take up the 30 minutes the first cold cap is on for so I get my second cap with the Taxotere. When the cap first goes on it is buggering cold but it very soon becomes easily bearable. In fact it’s not the cold that bothers me at all but I do struggle a bit with the fact that it covers my ears so I can’t hear properly. Now forget anything you’ve seen in films or TV; I don’t sit there throwing up or even feeling nauseous; I sit there playing Sudoku; chatting; drinking tea and eating sweeties – chemo is a big, fat non-event. But it is very long and dull so I’ve been very grateful to the friends and colleagues who have volunteered to come with me. I’ve only had to do one session on my own and I’ve got colleagues coming with me for the last two sessions so we can pretend to be working as we share a bit of work-related gossip!

After the chemo is done I get one more cold cap, for 45 minutes, but I’m free from IV drips so can wander off and at least get a change of view. And then it’s all over and I can high-tail it out of there! Chemo is every third Wednesday and for the next day and a half I’m pretty well fine but by late morning/early afternoon of that second day I’m starting to flump and by the weekend I’m completely devoid of all energy – getting up from the sofa, to make a cup of tea, is something of an effort. And the walk back from the kitchen – all 8 feet of it – seems a huge journey! But by Sunday evening I’m starting to perk up a bit and by Monday I’m back to work. I’ve taken one Friday afternoon and one whole Friday off sick, so far, but otherwise just carry on as normal. And although there has been hair loss – I pull enough hair out of the plughole to make a small shrew every time I wash my hair! – it’s pretty hard to tell. I know my hair has thinned but I don’t think anyone else could guess that, even with close inspection.

One of the side effects of this chemo is fibromyalgia (joint pain) and I do tend to ache a bit, over that flumped weekend. The acheyness has continued through the week and a half, since the last cycle, exacerbated, I think, by sitting for hours marking A’ level papers (they were mostly shit) and not going to yoga (cos I was sitting, marking A’ level papers that were mostly shit!). Hopefully that will fade once the chemo is over.

I had a CT scan after the second cycle, which showed the liver lesions were shrinking and the bone lesions becoming sclerotic (thickening), which are good signs. I have another CT next week, which will hopefully show the same thing, but I think we’d press on with the last two cycles regardless.

And I went to see Dr Charlie’s pet orthopod this week, up at Charing Cross hospital. First I had to wait 30 minutes, to then be shown into a consulting room to wait another 10 minutes before seeing a 12 year old Registrar who then asked me if I knew why I was there before sending me for x-rays. I was less than impressed as I could have been sent for x-rays as soon as I arrived and I particularly didn’t like the way he spoke to me as if I were stupid! That was one of the occasions when Ms James; scary teacher came out! Poor boy; I think he wet himself! But I did then get fast-tracked through x-ray; Child Reg checked the x-rays as soon as the last one was taken; and then I went straight in to see the real consultant! Nice bloke and a good communicator – almost too good; he talked so long I had to run to get the last train my ticket was valid for! And what did he have to say? He said the outside layer of my leg/hip/pelvic bones is strong; the lesions are sclerotic; and my normal levels of activity are ok; I’m fine to cycle, do yoga, etc – trampolining and kick-boxing are out, but anything I usually do is fine. I had the impression that surgery was inevitable, as soon as chemo is finished, but Mr Ortho said otherwise: For as long as treatment works, we’ll leave well alone. Once treatment is seen to not be working, or I get new pain, or some other, negative change is spotted in those bones then we can go for surgery. Surgery on the left femur is a very straight forward, very common op – a pin is put down the inside of the bone, strengthening the problem area at the neck of the femur. I was more interested in what he had to say about the right hip, however – previously I’d been told surgery isn’t an option but Mr Ortho seemed to say that, although surgery would be very complicated and quite extensive, it isn’t impossible. His preference would be to do the simple op first, and get the left leg as strong as possible, before attempting anything on the right. But in the meantime, I’m “in the system” and they’ll do little more than monitor me, every three months or so.

Two weeks ago, 10 days after Cycle 3 started, I was joined by friends to take part in the Castles Bike Ride – a 28 miles, cross-country ride in aid of MacMillan. As I’d got my grant cheque from MacMillan that week it seemed particularly fitting to take part. And my New Bike had just been finished, so obviously I had to take it on a test ride! Well I’ll admit 28 miles on a bike that, beautiful though it is, we are having a few teething troubles with and 10 days after chemo, was a bit much; there was a point, about 5 miles from the finish, when I came so close to just sitting in the field we were crossing and crying! But, my God, did it feel good to have done it! 43 years old; 6 years of secondary breast cancer; 3 stone overweight; in the middle of shitty treatment and with bones badly affected by cancer – I cycled 28 miles, uphill, downhill, over fields and up on the Ridgeway! I think that’s bloody impressive! My next challenge will be this year’s Race for Life, when I plan to walk 10km, instead of the usual 5km. I won’t run – both Dr Charlie and Mr Ortho say not to run, plus I bloody hate running! But I will walk the full 10km – so get your wallets ready or sign up yourself, cos I want to raise even more money than last year! The Race for Life is in aid of Cancer Research Uk; Dr Charlie works for Cancer Research UK; I am well because of their work and will remain well because of the developments that money can fund. And if that isn’t enough to persuade you to sponsor me/ sign up yourself, I’ll send Ms James; scary Teacher round! You can sponsor me at 

http://www.raceforlifesponsorme.org/ruthajames

He’s sent the scans off to Orthopaedics again, but expects the same response as before: Not enough solid bone to fit a prosthetic to. I’ve just got my copy of that letter (I get copies of all letters the Marsden send out, regarding my condition/treatment). Reading between the lines, Dr Charlie has basically said “She won’t stop moving! She cycles; walks; doesn’t do ‘sick’! I’m at my wit’s end; one or both legs is going to break if she doesn’t slow down, and she won’t slow down – we’ve got to make sure those hips don’t crumble! Aaaargh!” But, of course, all dressed up in Dr Speek. Once we’ve had an answer from the Orthopods, it’s on to Radiotherapy and Dr Charlie thinks another blast of that will be in order – I’m assuming it’ll be much the same regime as my right hip got; every day for a week. If they can confine it to the leg, that’s fine. If they want to come any higher up and fry my left, and only remaining, ovary, I’d be less keen and we might need to do some negotiating.

And, in the meantime, I’m changing chemo. After 8 or 9 months of oral chemo, Capecitabine, the cancer is progressing therefore that chemo is no longer effective. So we’re now going for what is usually the first choice; Taxotere. Dr Charlie held back on it, because it’s a more disruptive regime and has more debilitating side effects – basically it’s more like the AC chemo I had 6 years ago: I’ll be hooked up to a drip for an hour every 3 weeks, for a total of 6 sessions (or “cycles” as they’re usually called). Taxotere will affect my red blood cells, probably making me feel weak and wan, and my white cells, leaving me vulnerable to infection. And it generally makes hair thin, if not fall out totally. Six years ago, I found remaining active – ridiculously active – helped counteract the chemo’s affect on the red cells; and having a cleaner and being liberal with the Domestos kept me infection-free, plus – apart from cancer – I seem to have a pretty robust immune system. And we’re trying cold caps, to see if I can keep my hair, this time. The concept of cold caps is the make your head cold for an hour before, during and after chemo, to minimise blood flow to the scalp, and therefore chemo drugs to the hair follicles. The caps are more or less the same as the jackets you keep in the freezer then stick over bottles of white wine, to chill them quickly, and the ones the Marsden use are made of lycra, with a chin strap, making them look rather like water-polo caps! So pretty nobby, but not as nobby and a bald woman!

 I feel like I’m preparing for a storm, as I sort things out, ready for the possible side effects: Work have been informed; a friend is coming with me for as many cycles as I like; I’ve got a cleaner to keep on top of basic home hygeine. I’ll make a big pot of something the night before chemo, so I have meals for the next few days sorted. But I’m more than half expecting that, like the AC chemo, although I prepare for the common side effects they don’t really apply to me and I spend the week after each cycle, waiting to start to feel poorly and never really getting there: The storm never breaks. And it’s only for a total of 18 weeks; I should be into recuperation by the summer hols, which is nice! I’d like to book myself a holiday, for “after”, like I did with the AC chemo – but funds won’t run to Sri Lanka and the Maldives this time. Maybe a trip up to the Hebrides, instead…

The Cape worked for longer than Dr Charlie expected; we both expect the Taxotere to work longer than average; and Dr Charlie says, over in Research, they’re getting excited about a new, not-chemo, treatment that’s looking very positive. In the 5, or so, years between my initial diagnosis and the cancer becoming active again a number of new drugs and new treatment regimes came into general usage; I’ve always sort of had a goal of staying well enough for 5 years, from that second diagnosis, to benefit from whatever new treatments come in, in that time. I’ve done two years and there’s already something on the horizon – and I’ve still not got ill yet so, even with the latest progression and treatment change, I’m still going strong. Very strong! And with big thighs but also with a holy femur!