SMART Targets:

Specific; Measurable; Achievable; Realistic; Time-driven 

To swim 1 mile (64 lengths) 3 times a week - Almost met, just need to manage my time a bit better 

To do an hour of yoga/pilates 3 times a week – As Above

To cycle at least 4 days a week – Met

To increase levels of activity (and decrease dress size!) by Christmas – working on it!

I’m back on my bike, and towing the trailer and feel great for it! But, in one of those typical twists of irony, we’ve just appointed a Support Worker to do all the physical elements of my job, for me! Ah well, I’m sure we can make it work. I’ll admit that, after a week of cycling to and from my schools; bouncing round classrooms in my usual manner; and running on the spot to demonstrate “moderate exercise” to 9 classes – my hip does ache a tad. But then, it’s my first full week in school in 3 weeks (Conference, holiday, halfterm being the reason). And I’ve only recently hung up my crutches – without Dr Charlie’s approval. So I don’t think we need to read too much into that.

In other news – Housing have now reclassified me as Band A - the top band for rehousing, due to my medical needs. It’s a bit irritating as I only repeated information I’d already given, and sent them copies of letters I’d already sent! Oh, and there are no properties for 1 person available in Swindon, never mind ground floor flats or bungalows, which is what they say I need! But there is a lot of new build, all of which has a certain number of properties set aside for HomeBuyDirect type schemes – ie the How To Sneak Onto The Housing Ladder schemes and, hopefully, my Housing Band will get me onto those.

And I have also been given a Direct Payments package – monies to be spent on agreed services. First I was offered someone to come and do my laundry, change the sheets and go shopping. I said I didn’t need anyone to go shopping; Asda have an online service and colleagues/neighbours are happy to pop to the Co-op for the odd pint of milk. But I do need a cleaner. And I applied for Direct Payments – I want the money and the choice of how to spend it – not some do-gooder coming round to do my shopping! So they went away and came back and said You can have someone to do your laundry, change the sheets and go shopping! I said I don’t want or need that ; I applied for Direct Payments and I need a cleaner, who will also do laundry and change the sheets. Then I got a call from the Financial Assessment team, to assess if I would be asked to pay anything towards the Direct Payment package I’d been offered – I asked “What package?!” but they couldn’t tell me but did come out to assess me. Apparently earnings don’t count, though benefits do! Being on highest level DLA, for mobility is also dismissed, as that’s for taxis, etc. And being on highest level DLA for Care seemingly automatically qualifies you for Direct Payments, though the dimwit who came out to fill in the form for Direct Payments seemed to think the opposite!

Then I got a call from the bod who sorts out the Direct Payments; all ready to make the first payment, as soon as I sign the agreement. I told him I hadn’t heard what I was actually being offered so he went and found the file and I’m being offered Direct Payments to pay for 2 hours a week of………Laundry, changing sheets and Shopping! Same package of stuff I don’t need! So he’s going to get back to Dimwit’s line manager and I’m going to play Merry Hell with them! It does make you wonder why they bother to ask questions, when they quite clearly don’t listen to the answers!

I know I started this post by saying I’m fine now, and I am, but that’s not really the point – ok, so my hip isn’t hurting and I can walk without crutches; there obviously has been some improvement in the condition of the hip/pelvis. But it’s not cured and it’s not going to be; Dr Charlie didn’t think it would ever improve to the point of being able to bear my weight, and it will, inevitably, deteriorate, as will my condition generally. Maybe not in the next few days, weeks or months, but it will deteriorate. All the information I’ve given Social Services says my hip is in imminent danger of fracture; if it were to fracture or the femur to herniate through the acetabulum, as may also happen, I would be permanently, seriously disabled – the bone is not in a good enough condition to repair itself from that kind of damage. Now think how heavy even the lightest vacuum cleaner is, or a bucket of water, and imagine trying to carry either one upstairs, without putting any weight on your right leg! Or even trying to mop or hoover whilst balanced on crutches, or standing on one leg! Clearly ridiculous: Very unbalanced and very likely to fall or at least stumble and put weight suddenly and heavily on the leg you’re trying not to stand on – at which point I could suffer those injuries cited earlier – where a “normal” person would bounce or bruise, I am liable to break! Social Services could put a package in place to minimise this risk, if they would but listen!    

Somewhat frustrating – thank goodness I am so well or I’d be knee-deep in dirty clothes; dropped food; spilled drinks; muddy footprints and stinky sheets! And long may it continue!

I certainly feel much better for being more active, and for setting myself SMART targets: To be able to see things as possible, rather than snatched from my grasp forever, is such a positive experience. When I was in such pain and on crutches it wasn’t nice to be forced to think I might never dance, cycle or even walk unaided again – good job I’m not the type to give up. And good job Social Services are so slow and useless; if they’d given me what I needed, when I needed it maybe I wouldn’t be able to do it for myself now!

So hurrah for services that aren’t smart, and targets that are!

Keeping the Wheels Turning

Blimey – what a Bad Blogger I’ve been: Not updating my blog for , yikes, months! Well, I’ve not fallen off the planet or taken to my bed; a general lack of posts means all is going smoothly, finally –  it’s a case of “No News is Good News” !

My new CNS, covering the previous CNS’s Maternity Leave, is on secondment from Breast Cancer Care and I’ve met her before – Liz is intelligent, has a sense of humour, is suitably dynamic and assertive and, maybe best of all, is  used to dealing with the women who fall through the net so, to her, I’m normal and she knows what sort of support might be good for me, and how to get it!

Between us, aided and abetted by the ever-lovely Dr Charlie, we are trying to get me Direct Payments, to pay for my cleaner, and re-assess my Housing claim to get me more appropriately housed.

Dot ‘n’ Carry, my crutches, have been out and about – we all went to Hope for the week, for the Bike It National Conference – 54 pairs of eyes watching me and 54 pairs of willing hands (very willing; my friends and colleagues are very lovely!) meant I could use my crutches without compromise; no trying to balance on my crutches and carry a cup of coffee; I even got absolved from walking much or going up and downstairs too often, as people would offer to fetch Stuff for me. The result of which is that, since coming back from Hope, I’ve not needed my crutches at all!

I took them with me on my Highland Adventure to the Isle of Lewis, mostly for the Priority Boarding – but didn’t use them at all once I got there! I can now walk without limping and without any pain, the only restriction remaining seems to be squatting/crouching – I can do it just fine at the time but the next day I’m stiff and limpy. More to do with stiff muscles/hip flexors, I think, than weakness in the bones.

I’ve been swimming a few times and can still do my mile – I’m a bit wobbly afterwards and I don’t like having to traverse wet tiles; more the fear of falling than any actual unsteadiness, but no lasting ill effects – rather, when I do exert myself a bit, I feel much better; stronger, happier, more able, for the rest of the week.

And I’ve started cycling again – I did a 20km ride last weekend (in aid of Cancer Research UK, so really just to keep Dr Charlie in employment!); did a little ride (about 8km) on Monday; and cycled to work today ( there and back will be about 12km, but with a long sit-down in the middle!) – first time I’ve cycled to work in about 6 months! It was harder than I remember, but I am somewhat unfit – and In seriously over-ate while I was in Hope and Lewis so I’m the size of a hippo!

And I’m semi-officially off my crutches: I saw Dr Charlie this week and didn’t take my crutches with me. I explained there’s no pain and no limping and I’d not used them for 2-3weeks. Dr Charlie didn’t do the Sadly Disappointed voice, nor even the Slow Sad Headshake – he said something along the lines of “I’ve told you what I need to tell you; If you don’t feel you need them, fair enough”. I had a CT last week, so got the results when I saw him – all is stable in the liver and breast mass. I’d rather hoped for clear signs of improvement as, from my perspective, the breast is noticeably improved. Still lumpy and mis-shapen but more like a sock of dried peas, than a sock of marbles, as it’s previously been! The Capecitabine is at least holding things steady, with the tumours, but it’s a long, slow road with still another 10 cycles or so to go. We’re continuing with the 1 week on, 1 week off regime and have dropped the dose, as my hands and feet flared up again, while I was in Lewis. Not as bad as the first time, but bad enough. The more promising news is that the tumour markers have been coming down, at every blood test since I started on the Cape. They are only used as corroboration so confirm that the Cape is working.

In view of my lack of limp, I’m to have an MRI early Dec, to see how my hip is doing. Dr Charlie is hopeful we’ll see some sclerosis (thickening) of the bone; me, I think we’ll see a miracle cure! Then it’ll be another CT in Jan, to check up on the Cape.

And we have 3 candidates for the post of Bike It Officer Support Assistant: I feel a bit of a fraud as their job is to do the bits of my job I can’t, or couldn’t, do, ie cycling, lifting and shifting, standing for long periods. But I can mostly do those things again! Ah well, it’s a Government Funded thing, so it’s not costing me or Sustrans anything and it gives me the option to not over-exert myself and push my luck. But it feels so much better to be back on my bike and keeping the wheels turning!

Moving forward

Let’s see where we’re up to now: A week after the last epistle I was back at the Marsden for my IV zolly and to see Dr Charlie and the radiologist, Dr Imogen.

First I went all the way over to IV, only to be told “Oh no, you’re in Clinic first” So I went aaaallllll the way back to clinic to be told “No, you were right, you’re in IV first”! All on crutches; hands, feet and monster munch hip all still a bit sore. I’d made a fuss in IV, pointing out I’m not telepathic and if arrangements are changed it would be helpful if they actually told me, so I’d been followed down by one of the IV receptionist peeps, who went to find Ann-Marie, the fab fixie pixie. Ann-Marie came out to me in the waiting area; said yes, it was IV first and she was coming back up with me to knock a few heads together!  So not a brilliant start. But the nurse in IV was really rather good; I had a big moan and gripe to her; about the CNS situation and the Head Nurse’s lack-lustre response and the total lack of local support, etc. She gave some really sensible, intelligent and useful suggestions; like pushing Head Nurse to give immediate answers, even if she couldn’t give me an immediate appointment; and keeping a record of all that’s been said and not done; and other things along those lines. She also said my calcium levels had been a bit low last week so she did my bloods again.

Then I saw Dr Charlie; to check my hands and feet were sufficiently healed to start the next round of chemo (Dr Charlie has now seen my feet! And they looked like lizard feet! And he’s still lovely!). Ann-Marie was with us again, even though that isn’t actually her role, in clinic. But she’s bloody good at it, so it should be! I told him the nonsense Drippy Sue had come out with and he offered to tell me what he’d actually said and, guess what, it was somewhat removed from what she’d claimed! He had agreed to fill in a DS1500 form, to accompany my Disability Living Allowance form (this is the form that speeds up payments, for when a patient has a life expectancy of less than 6 months – Drippy Sue said Dr Charlie thought it appropriate, in my case, implying I had a very limited life expectancy) but his reasoning was he just wanted me to get the payment sooner, rather than later, so I can start making to necessary changes to my living arrangements. He said he was prepared to stand up in court and swear blind my life could be limited by that much but that, right now, it wasn’t. He offered to talk life expectancy but I declined! It’s sufficient for me to know the lesions in the liver are stable – that’s the only area, so far, that could be come life-threatening and right now it isn’t, so that’ll do for me!

Next he said he’d only agreed to a few days in the hospice because he wanted me to be pampered (aww, bless) while my house was sorted but, with hind-sight, he didn’t suppose it could be done that fast. I said I reckoned it would be 6 months before there was any movement from Benefits/Social Services/Housing on that front, by which time my lease would be up and I could well be moving anyway – another reason for not wanting stairlifts and such put in this house; by the time they do it I’ll have moved out! He had NEVER said I needed round the clock nursing care so Drippy Sue saying I needed hospice care or hospice-at-home was a pure fiction.

I told Dr Charlie that I was going into the office again, rather than working at home, explaining that it actually meant I was moving less and was better supported. And he didn’t even suggest I signed off sick or stopped driving this time. And then we finally got onto my current treatment – having seen my hands and feet, he wanted to reduce the dose, as well as change the regime, but I asked to at least try it at the same dose, and see if the 1 week on/1 week off stylee was sufficient to control the Hand/Foot symptoms. So that’s what we’re doing. He said my bloods showed my potassium was low, so prescribed Sando-K tablets; they’re effervescent tabs so for the next 3 days I had to end each meal with fizzy, salty water – yum! I said the IV nurse had said my calcium levels were also a bit low, so he prescribed Calcichew tablets as well, 3 weeks of those ones.

Then Ann-Marie took me round to see Dr Imogen to talk radiotherapy – very different to all I’d been told or had read: Quite a lot of choice as to how much got zapped but we were happy to agree on a very contained area that hit femur, acetabulum, and iliac. That put the right ovary in the line of fire, but kept all other girly bits and the bowel well clear. And the treatment would be everyday for 5 days and absolutely no hint of a suggestion of a thought of my having to be an in-patient for it! Again that was just fantasy on Drippy Sue’s part – an attempt to scare me into the hospice. I liked Dr Imogen a lot; she could perfectly understand why I didn’t want to be made permanently infertile, and go back into menopause again. She liked my response when I she said a common side effect is tiredness; “I don’t do tired!”; and was perfectly amenable to make my appointments as late as possible so I could at least do half a day in the office, before coming down for treatment.

Again, Ann-Marie had sorted out all my hospital transport so I got chauffeur-driven to and from the Marsden for the week of zapping. The first day was just Marking Up – a CT scan, to check the area they wanted to get, and a “derma-tag” a clear plaster with a cross on it, cos I again refused to be tattooed. I still think it a barbaric practice and think it’s akin to tattooing my hospital number up my forearm, like in the concentration camps! But as well as marking up, I finally got to see The Head of All the Nurses in the World (well, at least the Marsden)!

So what did she have to say for herself? That she wasn’t surprised to hear Fulham Rd CNS answered her phone when she shouldn’t - it’s been a problem since the walkabout phones were introduced, but Head Nurse would speak to all nurses AGAIN; that a CNS/keyworker should ALWAYS be present at a first appoinment and when there was a progression of diease and/or a change in treatment; that the problems with the Sutton CNS surprised her but, in a way, had taken themselves away as she was now on maternity leave; she agreed that for every patient that speaks out and makes a fuss (ie, me!) there are any number of other patients who feel the same but say nothing; that she would, with my permission, share what I’d said and my medical history with the new Sutton CNS, who would call to arrange to see me, ahead of my next clinic appointment. Oh and I’d taken her a Breast Cancer Care “So you’ve got Secondary Breast Cancer” pack and she loved it! I told her how very useful I’d have found it, especially the journal that forms part of the pack, and suggested they either get in BCC’s pack, or make their own. And I showed Head Nurse my appointment card with five different phone numbers scrawled on, to call “if I have any problems” and that I – a reasonably intelligent, educated woman – didn’t know which number I was meant to call when, and really just wanted one number – my keyworker’s – to call for any issue, and they sorted it all out. Apparently I should have been given an “I am your keyyworker” card, with one number on but…..!

What else? I’ve changed GP but, so far they haven’t impressed me. The Prospect Social Worker doesn’t know her job. I’ve applied, on my own behalf, for Direct Payments and a Disabled Parking Blue Badge. My DLA has come through already – at the highest payments for both Care and Mobility. I’m sort of back at the gym, but not on the regular kind of basis I’d like. Radiotherapy was fine and I’m back at clinic for the next round of zoledronic acid and capecitabine next week – though it might not be Dr Charlie for a while; apparently Sept/Oct is very busy for Research so he can’t always make Clinic. And we gave Ann-Marie the task of choosing which doc I see instead, so no pressure! And the new CNS hasn’t been in touch so that’s not looking too hopeful. I’ve sent off the Housing forms and the Rehab OT I saw is sending them a supporting statement. The Rehab physio came round with a sheet of chairobic exercises, they might have a little value, but they are aimed at arthritic old dears; but she’s at least got a slightly better idea of who I am and what I’m capable of though I’m still not holding my breath for any real help there. And I had a meeting with my Project Manager and HR Manager, about changes to working practice – a useful and positive meeting with a first-choice of How To Help Ruth being to get me  a part-time assistant Officer who can do my cycling for me. And HR found a possible assistance programme for me on the DirectGov site; something called Access to Work so that’s another form filled in.

And last weekend I was back on my bike! A friend was down for the weekend, to service my bike and put shiny new mudguards on and stuff like that. So I had to take it for a  test ride…and test out my hip…and a little pootle round on the flat wouldn’t do that…so we did about 15 miles, altogether, and went apple-picking! He hooked my bike trailer to his bike and we put Dot and Carry, my crutches in the trailer – how’s that for a “Can Do” attitude?! The cycling bit was fine, though I chose to walk up the steeper bits, rather than cycle; the forgotten orchard is on quite a steep slope and very rough ground and that maybe wasn’t such a good plan. But I did it with no serious ill-effects – I was very tired for the next couple of days but I had just had a week of radio and a week of chemo and hadn’t cycled at all for 8 weeks, and haven’t cycled any real distance for longer; so I was pretty chuffed with that!

And that pretty well brings us up to date. Oh, except I got my copy of Dr Imogen’s letter to the lovely Dr Charlie - and she wrote that she is hopeful that, if radio is effective, it will allow some remodelling of the bone ie that if the radio stops the hip from getting worse then the other treatments will allow some improvement. She’s the first one to say not just that all the treatments combined will stop the hip getting worse but might also allow it to get better. In my head I’m working to the idea of no more than 6 months on crutches, but that is just in my head and based on nothing more than my own perception of myself and sheer bloodymindedness, though a 15 mile cycle ride, and a tendency to leave my crutches lying idle, when I’m in the house, does give some hint that my hip/pelvis has more strength than has been implied. And, of course, I am the Incredible Healing Woman, with Amazing powers of Recuperation!!!! So, overall, my feeling is that, on all fronts, things are moving slowly forward, after months of slipping back. But, inch by inch, step by step, the care, the support, the treatment are all moving slowly forward.

Known to Social Services

Well it’s been a busy few weeks in the House of Cancer – I visited by Drippy Sue, with a 12yr old Occupational Therapist in tow, to see how they could help. Sue claimed to not know why I’d been referred back to them, so I showed her the MRI report, which identified the “destructive lesions” (whacking great holes) in the hip and pelvis. I explained that meant I mustn’t put any weight on my right leg, that I’m to walk with crutches, and that makes carrying stuff next to impossible. The areas I was particularly finding difficult were housework (think about it: Hoovering stood on one leg? Carrying a laundry basket outside or upstairs, on crutches?!) and I was aware that, as this is a medium to long-term condition, my house really just isn’t suited to disabled living – the only functioning bathroom is upstairs; the only kettle downstairs; it’s a fixed short-term lease so the chances of the landlady approving any structural changes are negligible and anyway, I don’t want to be hemmed in with devices and gadgets and contraptions that do more to trap me in the house than enable me to get out and get on with life! And Drippy Sue’s response? Oh Social Services don’t provide home helps anymore and I don’t know how to go about getting you better housing. Well, social services do, in some cases, provide a home help but, more often, they provide “Direct Payments”; a grant to spend however you like to make life easier. The 12 yr old OT suggested a zimmer frame on wheels, cos they happen to have had one donated! I made her go into my postage-stamp-sized kitchen and turn around – I don’t think you could get me and a frame in there! But that was her suggestion to help me carry a cup of coffee from the kitchen to the lounge – no suggestions as to how I made the coffee, whilst balanced on crutches, nor how I’d wash the cup up afterwards, given that my hands and feet decided they didn’t like the second cycle of Capecitabine and I developed Hand/Foot syndrome.

A little aside: Hand/Foot syndrome affects, err the hands and feet! By God but these doctors are clever at naming Stuff! The whole of the palms of both hands and the soles of both feet become red, sore, swollen – imagine your hands and feet covered in chilblains, minus the itching but plus all the pain and add in a tendency to blister. At it’s worst, I couldn’t put my feet to the ground or touch pretty well anything without pain. The only thing I could do, without crying out, was stroke the cat! Anything else: combing my hair; putting ponytail bands in; straightening my clothes; turning taps; cutting/chopping veg; lifting saucepans; holding a pen; holding a knife and fork; holding the steering wheel; changing gear – it all really really hurt! So plunging my hands into hot water, to wash up, even with gloves on, was not something I wanted to be doing!

Drippy Sue couldn’t see beyond laundry and coffee cups, and could make no useful suggestions as to how to facilitate my coping with either – and the idea that I am still at work and going into the office and attending meetings and stuff was just way beyond their comprehension! So we left it that the OT would do some research and see if she could find anything that might actual be useful to me and Drippy Sue said she’d have their benefits advisor come and talk to me about housing.

Then I got a call from the Marsden offering me an appointment with a radiologist, to discuss radiotherapy – which left me a little confused as there had been no suggestion at my last consultation with Dr Charlie that r’therapy was on the cards – indeed, it had only ever been mentioned as a method of pain control and I don’t particularly have any bone pain, so I was somewhat bemused. Then I got a call from Dr S (Dr Charlie was still on holiday) to say “The orthopaedics have seen your scans and you’re inoperable. Goodbye”! Again, rather puzzled as I thought I was going to see the orthopods, not just my scans – I had questions to ask them, that Dr Charlie had said he couldn’t answer, but they could. So I was rather pissed off that that was all I got!

By the time the Radiology appt came around my hands and feet were way too sore to make the 4 hour round trip to Sutton, so I didn’t go. So There, Nyah!

Then I had my next appt with the still lovely Dr Charlie: He is still lovely; he went through the orthopods’ report – was impressed they’d written a 20 line response; apparently orthopods are not known for their erudition! And assumed I hadn’t been told about the Radiology appt. So the orthopod report explained that attempting to put in a prosthetic hip would be an exercise in futility as there was no solid bone to secure it to, which I sort of knew already. But it was a detailed report and Dr Charlie was convinced – and convinced me – that it had been looked at from every angle and surgery just wasn’t an option. Which took us on to r’therapy: Not as  pain control, but to help support the hip. A course of radiotherapy should kill off the cancer cells, stopping the bone from deteriorating further. The resulting scar tissue should help stabilise the hip. Chemo and zoledronic acid should also stop things getting worse, and might make things better. I asked if the aim was to halt the deterioration or to improve the condition of the bone. Dr Charlie was quick to say the treatment should stop things getting worse; he sounded prettyconfident with that. He was less confident about improvement, especially sufficient improvement to get me off crutches – not that it wasn’t likely, just that it was very hard to tell if I would improve to that extent. But I certainly intend to get off the crutches and back on my bike!

A week before seeing Dr Charlie I had a CT scan, to see if the Cape is working. Dr Charlie had those results and yes, the liver lesions (3 of them, apparently, so at least 1 new one but Dr Charlie couldn’t say if the other 2 were the ones that have been spotted previously, or 2 new ones – he admits to being a bit rubbish at reading CT scans!) So I’m to continue on the Cape. However, having seen the state of my hands, and despite my saying they were so much better than they’d been a week before, I was given a 2nd week off the Cape, to let my hands heal properly, and then I’ll have the Cape over 4 weeks, instead of 3. This is standard in America, apparently; alternating 1 week on with 1 week off the Cape – efficacy is the same and the toxic build-up, resulting in side effects, is much less. If I still get the sore hands and feet (and galloping diarrhoea, but we’ll not talk about that!) then we’ll have to reduce the dose, which would reduce how much and how soon it beats the cancer into submission. And the zolly will go to 4 weeks too, so it ties in with my visits to Dr Charlie – it was only on a 3 week cycle, cos the Cape was; 4 weeks is the more usual regimen.

Dr Charlie said Ann-Marie, one of the nurses (a really lovely one) would be joining us and she did – and behaved like a proper nurse! She made useful and pertinent contributions to the discussion and then sorted my appts so I get to see a radiologist, Dr Charlie and get my IV zolly all on the same day; she also sorted hospital transport for me, and talked me into accepting it, as Dr Charlie isn’t sure my hip is sufficiently strong to withstand an emergency stop and wants me to contact DVLA and my insurers before I drive again. All the kinds of things neither of the CNS’s ever did!

Dr Charlie said they had a new CNS starting at the end of the month and he’d introduce us – I dunno if the previous CNS is on maternity leave or was just fat when I last saw her and has now fallen on her sword cos she’s shit at her job! I told Dr Charlie I hadn’t heard from the Head of All the Nurses in the World (well, the Marsden) and he said he’d email her again. He asked if I’d seen the local community care nurse and I told him of Drippy Sue’s visit and how ill-tuned she is to supporting people living with cancer; rather she supports those dying with it. As I’m reaching the point of needing local, primary care support, I have to find a GP who is a bit better at it than my current GP – so I’ve been set homework to find one, before I see Dr Charlie next!

Dr Charlie was again, really really really insistent about not weight-bearing on my right leg – Knowing I would still do more than he said I should, he went as far the other way as possible ie If he’d said “try and take it a bit easier” I wouldn’t have changed a thing! Only by saying “Do Not Move!! At All!!!  Ever!!!!!” did Dr Charlie know that I might take a little more care not to weight bear on my bad side! He again wanted me to sign off sick and I again refused – I only have 8 weeks sick pay in any 12 month period, and I’ve already used one week – If I’m to have a course of radiotherapy similar to what I had 5 years ago, that’s another 4 or 5 weeks of daily trips to the Marsden, which wouldn’t leave much time for work, so might have to be sick leave. So we negotiated that I’d “Work from Home” for the summer and sign off sick afterwards, to give my hip some chance to strengthen up. I have, just about, managed to stay home this week, but will almost certainly go into the office next week. And I have a meeting with HR and the project manger the week after – to discuss changes to my working conditions – so will be in the office then. I might drive myself in, or I might get a lift from a colleague. Or I might cycle, if my hands are up to it.

I can’t help but temper all I’m told about the precarious nature of my hip with the fact that it’s been hurting for over 4 months now, and for the first 3 and a bit months, I carried on as normal: I walked, unaided; I stood for long periods; I RAN, for goodness sake; I walked round various tourist places and for 5km, over rough ground, for the Race for Life; and I rode my bike – even came off it a couple of times. And my hip held up. Yes, it hurt at times. Quite a lot sometimes. But it didn’t break. And that’s when I didn’t know I should be careful. Now I do – now I have crutches, so I don’t put my weight on my right leg; now I don’t run or cycle; now I get up from chairs just on my left leg. Why should my hip collapse now I know to take care, when it didn’t when I didn’t?

To save me walking back and forth, Ann-Marie told me stay in the consulting room, while she ran round and sorted stuff. The consulting room is next to the clinic area, where I could hear Dr Charlie on the phone and heard my name: Turns out, he was talking to Drippy Sue, who came round the next day, this time with the district nurse. I made some weak joke about I thought all District Nurses rode sit-up-and-beg bicycles and had bosoms like battleships, and she countered with no, but we do all drink tea…*hint, hint*!! I had purposely left the house a mess; dirty dishes piles up; carpets un-hoovered; if Amber had chosen that morning to throw up or deposit half a mouse in the lounge, I’d have left that too! to prove I couldn’t keep it clean, and I was damned if I was going to run round making her a cuppa! Drippy Sue then told me: I had less than 6 months to live; I needed round the clock nursing care; and my condition had deteriorated dramaticallysince I’d last seen her! All total bollocks, unless there’s a lot Dr Charlie isn’t telling me, which I’m sure is not the case! It really infuriated me that she then told me that I couldn’t weight bear, cos Dr Charlie had told her! The fact I had already told her that she completley ignored, claiming she didn’t know the whole situation when she’d seen me 10 days before, even though I’d shown her the MRI report and told her what I’d been told! She offered me a (shared) room in the hospice or hospice at home – when I pointed out I didn’t have any nursing needs, I just needed help with the housework and help finding more appropriate housing – exactly as I’d told her the week before – she realised she couldn’t help me, though she thought it more a case of me refusing to be helped. By the time she left I was absolutely fuming and remained so for some hours afterwards. I have now decided to cut all connection with her and with the hospice; there is absolutely nothing they can offer me and being mad as hell for hours after speaking to someone is really not good for me!

The next day I saw the person Sue described as their Benefits Advisor but turns out to be a Social Worker – so I am now known to Social Services! Shame she was yet another one of those head-tilt, sad-voice, weak as dish-water, well-intentioned but utterly ineffectual people! She brought the forms to put me on the council house/housing association lists, but as they’ll only offer me a 1-bed ground floor flat and I need at least a 3 bed house, with room for a dedicated work-space I’m dubious of the value of filling them in. She said she’d go away and see what she can find, but I don’t think she’ll be any use to me. Then, in the afternoon, the Rehab team – a physio and an OT, came round. The physio was another hopeless case, but the OT seemed pretty on the ball. She took control of assessing my needs and focussed pretty well just on assessing the house as inappropriate, to help move me up the housing ladder. I asked the physio some physio-type questions, trying to get her to give me some guidance I could take to the gym so they could work me out an appropriate training programme; so I can exercise and maintain my fitness through chemo and radiotherapy. To go from cycling 200 miles a months, plus bouncing round classrooms and running round playgrounds, to absolutely nothing is not good for either my physical or mental health. She ummed and erred and admited she didn’t really know, and didn’t seem to know how she’d find out!

And I finally got a call from the Head of All Nurses in the World (well, the Marsden) – I know it’s cos Dr Charlie emailed her a second time and probably used his “Sadly Disappointed” voice on her - But she claimed my answerphone was broken. I told her it wasn’t, I’ve had a number of messages left over the last few weeks. She rang my landline first, and hung up as soon as the answerphone kicked in (I just couldn’t get to the phone fast enough, on crutches), and then tried my mobile. If she really had tried calling before, and really did think the answerphone was broken, why didn’t she call the mobile?! So a transparently weak excuse – no wonder her nurses are crap, if that’s the example she sets! She offered to see me any time I liked; except the time I said! She said she’d come out to Swindon – so spend at least half a day to see one patient? I don’t call that effective time-management! But I suggested she speak to the radiologist, after I do, and arrange to see me when I’m at the Marsden for that.

I don’t expect it to lead anywhere, just as I don’t expect the new CNS to be any better than the other two. And I don’t expect the physio, OT, social worker or anyone else in Swindon to actually facilitate my care. Anything I need I will have to do for myself – so I’ve arranged a cleaner to come for an hour and a half, twice a week. The cleaning manager was really good; fully appreciative of my needs, being on crutches; she mostly employs Portuguese and Brazillian cleaners, and knows their English isn’t always very good, so, on the first occassion, she’ll send the supervisor with the cleaner, to make sure my expectations are communicated clearly. And I’ve spoken to one of the local house-builders: There’s loads of new-build in Swindon; I know all new-build has to have a certain percentage as Social Housing, and the social housing has to include provision for disabled living- so, presumably private housing does too. I’ve got a friend on the council talking to Planning, to try and find those house, and a sales person from Miller Homes (who just happens to have been a nurse in a previous life) said buying off the plan, before the house is built, would mean I could have adaptations built in, which would be loads cheaper than bolting them on afterwards. Doesn’t get me over the small problem of no deposit or funds for legal fees, removal costs, etc BUT does, sort of, give me somewhere to go with it.

My hands now look like I’ve got leprosy, as the skin “burnt” by the Capecitabine is peeling off. And I can’t resist “helping” it and so, inevitably, pull off living skin, along with the dead, making my hands sore. I’m getting into online shopping and when to put my asda order in, so I get it delivered before I run out of stuff! I have neighbours who would pick me stuff up, and indeed have done, but asking for help is not one of my strengths…! It’s interesting to see just how many highstreet stores now have an online and home delivery service and walking round shops, even leaning on a trolley, was a fairly uncomfortable process. But I’m getting more proficient on crutches and can still drive, so can get to work. And have proved that me and my crutches can do inter-city train journeys. Yes, I’m careful and yes, I ache a bit at the end of a busy day and yes, I still rebel occassionally and do without my crutches. I understand and appreciate what I’ve been told – about my condition and about the chances of improvement - but I’m not going to throw my hands up, take to my bed and await death. I am living with cancer, not dying of it – and as I now have a Social Worker maybe I should take advantage of it and make up for the sobriety of my youth (there’s a prize if you can identify that quote!) and become Known to Social Services in that respect, instead of as Cancer Girl!

Monster Munch

So, after about 3 months of walking like a drunken sailor and a near constant ache (increasing to pain later, 4 sometimes 5, occasionally gail-force) in my right hip/leg, I got an MRI on it. First they did the ususal scan of my spine – half an hour in the drainpipe – then they turned me round to do the pelvis. They still had to feed me right into the machine, but it was only for ten minutes or so. As usual, I “lost” about an hour and was a bit vague and shakey for the rest of the day. MRI’s really aren’t a lot of fun, but I can do it if I just put my mind elsewhere, for the duration – except it then takes a little while for it to come back again!

I got the results the very next day, from the still lovely Dr Charlie – STOP!!!! Do Not Walk! Do Not Run!! Do Not Cycle!!!! Do Not Pass Go! Do Not Collect £200! Do Not Put Any Weight On Your Right Leg!!! As it would appear my hip/pelvis have been mysteriously replaced with monster munch and could fracture with the least impact! For those of you with A’level Biology, or above, it’s the acetabulum and the ileum, on the right side, that are very badly affected by the cancer. There are 2 types of bone cells; osteoblasts and osteoclasts; the ‘blasts destroy old cells and the ‘clasts build new. When breast cancer gets into the bone, it makes the ‘blasts go a lot faster than the ‘clasts and, if not checked, you end up with bones no more solid and stable than monster munch. Or cheezy wotsits. So as well as changing to chemo, I’ve now changed to IV zoledronic acid, in place of the bonefos – so after a year or more of begging for more aggressive treatment, I’ve finally got it! Am I pissed off? Just a tad!

I get the IV zolly in a 15min infusion every 3 weeks, when I go to get my party pack of Capecitabine, so it’s looks like I’ll be up and down the M4 and round and round the M25 far more often than I have any desire to be – though it’s always nice to see Dr Charlie!

Dr Charlie had arranged to see me before clinic, as he had to go to meeting during clinic, and he wanted to be sure A) I saw him, B) We had sufficient time for him to explain what’s going on and C) To introduce me to another medical oncologist, Dr S, as he’s away for the next 2 weeks. The spine MRI showed no change, the CTI had last month showed 2 new lesions in the ribs, but Dr Charlie pretty well dismissed that, saying he trusts the MRI more, and the CT also showed 2 lesions in the liver – I’m not sure if they are the same 2 lesions or 2 new lesions, or what. But they’re there and need to be tackled. Dr Charlie had asked if it would help to see the actual scans and had to take me into the clinic area, where patients aren’t meant to go, to bring them up on the computer, so it was a bit rushed. We also touched on the farcical keyworker situation; CNS Head-tilt and Sad Voice refused to come out to me last time, when I was sobbing in reception, because “I had upset her” – err, ’scuse me, but which of us is in a very traumatic situation? Which had just been told their cancer was worse and treatment had to be changed? Which one had some reason to be a little tetchy but actually didn’t even raise their voice? And which one is meant to maintain a professional demeanour and diffuse the situation and NOT run away and cry?! Silly moo! So Dr Charlie said he’d get the Head Of All Nurses In The World (well, the Marsden!) to see me and we could sort something out.

So, I had an hour with Dr Charlie, then had an appointment with  PALS – I told her how the Marsden weren’t meeting acceptable standards of care; that a crappy little general hospital, with a fairly poor reputation, gave far better support to its patients; that one CNS thinks it appropriate to answer her phone when she’s with another patient and the other appears not to know how her phone, or at least her voicemail, works! That one CNS thinks her role is to coerce patients into doing what the doctor said and other does a good impression of a nodding dog but doesn’t actually speak! And the PALS lady said I should meet with the Head Of All Nurses In The World (well, the Marsden) too.

Then I went up to physio, to get maybe a whole 5 minutes in How To Use Crutches – physio seemed to think I’d only be on them a few days and reckoned I was safer not using them on the stairs – so that means not using them upstairs, which means there’s little point in using them downstairs…..! I tried to use them for a couple of days and, if my hip is painful, it’s slightly easier with crutches. But the crutches make my hands sore, bruised and blistered. And I can get on with life better without them – how are you meant to carry a cup of coffee, on crutches? Or clean the house? Or carry shopping in from the car? Of carry my display boards and crate of leaflets or box of freebie give-aways, into schools? Can’t be done – so I’ve mostly stopped using them. My hip hasn’t fractured in the last few months, while I wasn’t on the right treatment, why should it suddenly shatter now that I am?

Then it was back to clinic, to pick up my appointment card and Capecitabine – except they wanted me back in clinic, so it was through to the little corridor of doors. I had a bit of a chuckle with the couple next to me, as he said it was like a French farce with people going in one door and out of another, as they inter-connect. I was waiting for the vicar to come out, with his trousers round his ankles….! Anyway, we then got chatting and it turned out the lady had had secondary breast cancer for 18 years, there was a point when she couldn’t walk but now she can. She was mid-forties when she was diagnosed, so must have been late fifties, early sixties, and going strong. Which was nice to see. Having had my chat with PALS, I asked her if she had a keyworker – “No”. Had she met the CNS for secondary breast cancer? “No”. Did she know there was one? “No”. Hmmmmm, not very good for a hospital that is meant to be a world leader in cancer care! So after hanging around in the corridor for half an hour or so it was just to be told I could have my first IV zolly then, but not there – the IV room is at the other end of the hospital – on crutches! So off we waddled to the IV room.

By now it’s getting on for 5pm; I’ve been at the hospital since 11.30am and haven’t eaten since breakfast at 8am! I’d had a cup of water but that was about it. So I was hungry, thirsty, tired, a bit stressed and starting to feel a bit weepy. IV was busy but at least they found me chair while I waited, but only cos I was on crutches. When I finally got to go in, the IV nurses were lovely and even made me a rather nasty cup of tea! Can’t say I like the set up though – a room of about 8 big hospital chairs, each with a patient hooked up to a drip, with 2 or 3 nurses running between them. A far cry from my room to myself while I got my chemo at Leighton, and a chair for Bernie (while Glyn had a toasted teacake and stayed well clear of any sight of needles!) and a chance to catch up on all the family gossip! With one arm canulated and attached to a drip, it’s a bit hard to do my Sodoku or even read a book (go on, try reading a book with one hand!), but it’s only for 15 mins and then, finally, at about 5.45pm, I got to go home!

Now, because I’m meant to be on crutches and you can’t wield a mop or push the Hoover around, whilst balanced on two sticks, Dr S, on behalf of Dr Charlie is meant to be contacting Drippy Sue or some other community/palliative care nurse/social services to get me some help. Dr Charlie is referring me to an orthopaedic surgeon, to see if surgery can help my hip, though Dr Charlie didn’t think there was any solid bone to screw the crumbly bone to; the Head Of All Nurses In The World (well, the Marsden!) is meant to be getting in touch and finally, all my care is meant to be coming together – but you can guess where this is going, can’t you? A week has gone by and I’ve not heard a dickie bird from any of them. And, with no keyworker, I’ve no-one to call and ask what’s going on!

It’s a relief to finally feel we are really tackling the cancer, but very frustrating that it was left to get worse, before this could happen. I’m on my 2nd (of probably 14) cycles of Cape and get a CT in a week or so, to see if it’s working. I’m not sure how or when we check on the bones, I’d guess another MRI in a month or so. And another 10 days before Dr Charlie comes back off Leave and I might actually get to hear from all those people I’m meant to hear from!

In the meantime, I’m meant to levitate to avoid my monster munch pelvis from fracturing!

Caped Crusader

Now I don’t want anyone to get silly or hysterical about this but…I have now started chemotherapy. And, before you start leaping to conclusions, let’s get a few things straight:

It’s not the same chemo I was on last time – that was AC, this is Capecitabine. That was administered as an infusion, this is tablets. The only similarity is they are both 3 week cycles.

I am not going  to lose my hair. It might possibly thin a little, but even that is unlikely.

I am not going to be throwing up all the time, or generally a bit weak and wan. If you remember (if you knew me then) I was a bit limp for 2 and a half days out of each three week cycle and spent the rest of the time, working my ass ( and tummy and thighs and various other wobbly bits) off in the gym. And Capecitabine is even better tolerated!

I am not at any increased risk of infection. My white blood cell count, and therefore my ability to fight infection, is unlikely to be lowered significantly by this chemo.

I am not at death’s door. This is not some last ditch attempt to preserve my life for a few months longer; the cancer is still not life-threatening and hasn’t spread beyond the breast, liver and bones. But it has worsened a little in the breast and liver so the Tamoxifen wasn’t holding it back and it was time to try something else.

Capecitabine is an oral chemotherapy so I just take tablets – fistfuls of them – morning and night for 2 weeks and then have a week off. I’ll have a CT scan during the second cycle, to see if it’s working and, assuming it is, will have something like 12 to 14 cycles. I worked that out as about 8 or 9 months.  The benefit of an oral chemo is I don’t have to schlepp over to Sutton every 3 weeks and be hooked up to a drip for an hour or more. Except I do have to go to Sutton at the end of this cycle, and the next and probably pretty often throughout – nothing’s really going to be certain until I have that CT scan. So far I’ve had no side effects at all, but wouldn’t really expect to during this first cycle, or the next one, much. Then it’s the school holidays and I can monitor my energy levels and generally see how I’m getting on and whether I need support at work. But the ever-lovely Dr Charlie went for Capecitabine as he felt it gave me the best chance, and a very good chance at that, of staying in work and on my bike. Not that I can cycle at the moment as my slightly broken leg continues to be *%&£^%ing painful – I actually had my first day off sick, since joining Sustrans, last Friday as I couldn’t actually walk! And my nice GP has left the practice so I’m effectively without a doctor – I’m very close to turning up at A&E, claiming I just did it. Although the bone scan didn’t show anything new in my hip, I know the cancer is there so of course it has occured to me to wonder if that’s the source of the pain or hairline fracture or trapped nerve or whatever it is I’ve done!

I was going to tell you all about how rubbish the Clinical Nurse Head-Tilt & Sad Voice is, but you know what? I can’t be bothered! You’ve heard it before, and so have I - I need to make hospitals realise that a job title does not equate to providing a service; the job title holder has to actually do something! Starting with talking to their patients and finding out what they want/need. I have a set of tools, in the Breast Cancer Care Standards (you know, that Launch I went to), so I think I’ll contact the Marsden’s PALs and suggest we meet up to look at how the Marsden isn’t meeting the standards, casually mentioning I didn’t see either of the CNS for secondary breast cancer at the launch, and how they might like to work with some of the patients to improve their service. I’m also very vaguely toying with the idea of a work-based support group – when I told HR about having cancer, their response was “Oh we don’t have a policy on that; we’ve never had anyone working for us have cancer” Really? In 30 years and with all these employees, none has been affected by cancer or any other long-term or chronic illness? Not very likely! And just a month or so ago one of the Regional Directors put out an email, informing us of the death of an employee from cancer, and I already knew of A.N.Other, working for Sustrans, who is currently being treated. I’m not sure what form a support group would take; I’ve never been drawn to the idea of sitting around with a bunch of sick people, moaning about having cancer. And in my 5 years of dealing with this, I’ve found more support and common ground with people who have, or have had, other chronic illnesses than I have with others with breast cancer. So far all I’ve come up with is to be allowed regular (maybe every other month) meetings in work time – so the support to keep is in work doesn’t have to be taken out of sick/Annual Leave; set up an Office Buddy – someone who works in the same office and knows your health status, knows what side-effects to look out for, can call line managers/HR/whoever on your behalf as and when, just to be on your side; maybe linking with local (or National, if such a thing exists) complementary therapy providers, so we have access to the massages and yoga and acupuncture that have been proven to work, at a time and location convenient to where we work; to work with HR to develop a policy that maybe includes more than just 8 weeks sick leave per year – that’s really not very much when you could need rather more, if you’re having chemo/radiotherapy/regular surgery or whatever, and an established pattern for staged returns to work, after long-term illness. I don’t really know what I’m talking about as I wasn’t working when I was being treated firt time round, and my current employers don’t have a policy! So if your company does, or you have an opinion, let me know!

The end of term is in sight and it would be nice to have a good rest – but I’ve just accepted another 150 AS level scripts, to go with the 200 I still have from my original allocation; I’ve got an interview for promotion next week and am interviewing (for a new Bike It post) the week after; and I’ll be moving house in August – either to take up a new post in Peterborough, if my interview is successful, or just across the road to a cheaper rented house if it isn’t. I have loads of Annual Leave still to take, but no time to take it – though I am hoping to get up to Lewis, via Dundee, sometime between now and Christmas. I’m really rubbish at this “being ill” mullarkey, aren’t I?! Maybe I really am a super-hero; after all, I’ve got the Cape(citabine) and the crusade (to get a better service for peeps with secondary breast cancer) – all I need is the not-quite-as-smart-or-good-looking-as-me sidekick…any takers?!

 

Part the Second

I have an appointment with PALS (Patient Advice and Liaison Service) to discuss support for secondary breast cancer patients and Breast Cancer Care’s “Standards in Care”. Dr Charlie is going to find me another nurse. Dr Charlie is going to show me the scans and talk through all the results. Dr Charlie is going to order me an MRI on my borked leg. Dr Charlie is my new best friend!

Out to Lunch

When the ever-lovely Dr Charlie said he wanted to refer me for a surgical consult he asked if I had any preference for being seen at Fulham Road or Sutton – the two sites of the Royal Marsden. They are about the same in travel time; Fulham Rd maybe a bit of an easier journey (I let the train take the strain), Sutton maybe slightly cheaper; but if I go to Fulham Rd I get lunch with my cousin - So I was sent to Fulham Rd, and yes, I had lunch with cousin Andy!

Dr Charlie also asked if I had any preference for being seen by a male or a female surgeon – well, I’ve had my knockers out to all and sundry over the last 5 years, some of them even had medical qualifications – so it’s a bit late to start getting coy about it now! As it was, his preferred choice was Ms Lady Surgeon at Fulham Rd – actually the person I was erroneously referred to when I first transferred to the Marsden. I didn’t see her then, as it was an oncologist, not a surgeon, I needed to see, but I saw her now.

As soon as I was in the consulting room I got swabbed for MRSA – I tested positive at my first trip to the Marsden; washed in surgical scrub for a week and now have to have three, clear swabs, before I’m declared free of it. The last 2 were clear, so hopefully this one will be too – cos sticking a giant cotton bud up each nostril, down my throat, and round my groin is not the most comfortable or dignified of procedures! And for those of you thinking, “Oh my goodness, she’s being eaten alive by a flesh-eating bug! She must look like a monster from Dr Who by now!” err, no, not exactly! MRSA, like so many other bugs and bacteria, can sit quite happily and harmlessly on the skin or up your nose or wherever, and do no harm at all – it’s only when there is an open wound for it to get in that there’s a problem. And even then, only if your whole system is so weak it can’t fight back. Getting me clear of MRSA is as much for the benefit of other patients and the Marsden’s League Tables as anything else.

Anyway, that over, Ms Lady Surgeon came in – in fact they came in mob-handed: Ms Lady Surgeon; a visiting surgeon from Pakistan; and a giant pudding of a breast care nurse (the first I’ve met!) who sat there like a pile of uncooked dough and seemed rather bored with being there! I felt a bit ganged up on and, if I’d been asked first, I would actually have asked for the visiting surgeon NOT to come in. They are only little rooms and I felt rather crowded. Ms LS made the usual surprised comment about me being on my own, but then corrected herself and asked if I usually came alone. I said they wouldn’t let me bring my cat so, yes, I’m usually on my own! I wish people wouldn’t assume everyone comes in a couple and the only reason for someone being at an appointment on their own is because hubby had to work. Even if there was a Mr Ruth in the picture, I’m not sure I’d be dragging them along to every appointment; I’m not really the kind of Little Woman that needs a Big Strong Man to look after me and talk to the scarey doctors for me – in fact, I think some of the docs have wished they had someone to talk to the scarey patient for them!

Anyway, back to MsLS: As suspected, surgery isn’t an option at the moment. Not that the cancer is inoperable; rather she said she wouldn’t be sure of getting clear margins so I could be subjected to a long operation (she said 6 hours!) for no real gain. If she was sure it’d improve the situation, she said she’d do a 20 hour op., but the cancer is widespread through the breast, so there’s not much room to cut round it and leave clear edges.

However, she did say, if  I do, indeed, shortly start on chemo, and if I get a good response, then surgery might become a possibility in the future. She checked I knew it wouldn’t be a cure; this would just be to get better control of the disease. She asked how I felt about surgery – looked at objectively and logically then it makes a lot of sense: We’ve got control of the disease in the bones and liver with very “light touch”, unintrusive drugs. My day to day life is barely affected by them at all and the vast majority of people have no idea I have anything wrong with me, let alone cancer. And that’s good – I’m in charge of my life, not the cancer. Except for the breast, which has been getting slowly worse since about November, and the tumour markers have been going up since about Feb. So removing the one area that remains a problem, and could be a primary source of the problem in other areas, makes perfect sense. But being objective and logical about one’s boobs is not such an easy thing to do!

Because the cancer widespread in the breast, MsLS said she would have to use skin from my back to close the wound. She’d also want me to have radiotherapy afterwards, just to make sure we’d got every last little cell, and that “cooks” the flesh, making it a bit of a no-go for reconstruction, for at least a year. Not so great actually. On the other hand, when I was ready for reconstruction, they’d use fat from my tummy to make the new boob, so I’d have a tummy-tuck and boob job, all in one! Result!

But mostly, what Ms LS said just gives me more options: Surgery now, with indifferent results; chemo indefinitely; chemo for a finite period and a positive outcome, then surgery, and then some maintainence regime. In the last couple of weeks, there’s been a slight change that I think might make yet another option available – after some 8 weeks of excruciating pain in the breast, it’s mostly gone. And is a little softer – I’m wondering if the Tamoxifen is starting to have an affect on the cancer cells in the breast, making staying on Tamoxifen an option again.

I have a ct scan and bloods next week and then seeing Dr Charlie the week after to get the results so I’ll soon know if my observations have been correctly interpreted. I have two job interviews that week too, and next week off work to mark A’level papers and maybe earn enough for a holiday – my first in 4 years!

Oh, and we’ve passed the anniversary – I have now been treated for secondary breast cancer for just over a year. And I’m absolutely fine! No difference, whatsoever, from my general health and vitality a year ago. I eat, sleep and drink just as well and just as much; ride my bike, swim a mile before breakfast, bend,lift,haul sofas around to do the housework;  go to work, see friends, play on the internet; basically do everything I’ve ever done, in just the same way, with the same verve and joie de vivre. Cancer, schmancer – I think it’s just a bad case of wind!

Having fun, storming the castle!

I now have proof positive that it possible to have other things wrong with you, when you have cancer! I hurt my leg a few weeks back, and then made it worse by going running. Three times! You’d have thought doing it once would have given me a clue but no, as soon as I stopped limping I tried running again – the first step hurt, but I kept going for 5 minutes. I then limped for the next couple of days until it was my Crap Ladies Running Group evening and this time ran for 20 minutes! I blame my Public School background “Come along Gel! Don’t be such a fainting blossom; you’ve got another leg haven’t you?! Hop! Last one back’s a sissy!” Anyway, I then had a pronounced limp ( pronounced “l-i-m-p”) for quite some time, after that, and a very achey hip!

Previous scans have shown cancer in the hip and pelvis, though it might be arthritis, and I had another bone scan coming up. I reckoned if I saw my GP or called the Stealth Nurse they’d just say it’s probably the cancer and let’s see what the scan shows, before we do anything. So I saved them the trouble and said that myself. But the scan showed the bone is slightly improved, which is nice. There was nothing particularly sinister to see in the hip, certainly nothing that hadn’t been there before and, as the ever-lovely Dr Charlie said, if I had fractured my hip I’d be in considerably more pain and unable to walk!

He did pretty well put his head in his hands when I said I’d been running. Apparently Running Is Bad! All impact sports are BAD, and not really to be recommended if you have cancer in the pelvis, as that takes a lot of the impact. He said his bones hurt when he runs! Cycling and swimming are GOOD, so I can keep doing that – he’s a cyclist too and I suggested he became the Sustrans doctor, though I suspect being Honorary Consultant for the Royal Marsden Hospital might pay a tad better! He then asked if I’d been over-doing things recently and I said not particularly: My bike mileage claim was only 100 miles for the month, though obviously that doesn’t include between home and office; I’ve started towing a trailer on my bike but I don’t think I overload it; “my” flat cycle track that connects my house to the cycle path, proper, is closed so I have to go up the very steep switchbacks – some days I do it, some days I get to the first bend, lose momentum and fall off! The steep path is virtually on my doorstep so I’m not really warmed up when I’m trying to haul my ass over it…so no, nothing out of the ordinary!

After we’d had a bit of a giggle about claiming bike miles and realised it’s only the same as claiming petrol or mileage if you use your own car for work, Dr Charlie suggested I tried to take it a bit easier and DO NOT RUN until I see him next. If I’m still walking like a drunken sailor in 5 weeks then we’ll go down the X-ray, MRI, radiotherapy route but he’s keen to not give a knee-jerk reaction and assume it’s all cancer, as a certain Dr Kim once said, when it seems more like I’ve pulled a muscle.

So that was the good news – the bonefos is having the desired effect on the bones and the cancer there is stable. The CT scans also still show the disease, if that’s what it is, in the liver to be stable too. But the tumour markers (substance expressed by the cancer, found in the blood) are up for the second month running. Tumour markers aren’t used on their own to assess response to treatment, rather to corroborate what other evidence shows. So Dr Charlie wants another CT scan, just to check on the liver. Then I said the breast has continued to be painful, even with the NSAIDs and that made him more concerned. I think the breast has been deteriorating since about November, Dr J would have none of it and just focused on the fact the lesions in the liver were improving. Dr Charlie is a different kettle of fish (how mad is that phrase? Why would fish be in a kettle, anyway? It’s not as if they even drink tea!), he sees the painful boob, coupled with the raised tumour markers, as a cause for some, slight concern. The CT scan picks up the breast mass too, so we’re still going for that, but he’s also referring me to a surgeon (or maybe a sturgeon, if we stay with the fishy theme!). He’s pretty sure surgery is not an option, but wants a surgeon to make that decision, rather than assume – how rare is that; a consultant without an over-inflated ego?! I’m actually being referred to the person I was originally, erroneously, referred to, at The Marsden. It’ll be the Fulham Rd branch, in Chelsea, so any Central London people who would like to entertain me to tea and buns watch your emails for me inviting myself over!

Throughout all this Melissa the Stealth Nurse sat there, simpering but not saying anything. She really is a waste of space! If she doesn’t communicate with me, how are we meant to develop any kind of working relationship? Dr Charlie said to remember I can call Stealth Nurse if I have any concerns and I had to bite my tongue to stop myself from reminding her to switch her voicemail on – Of course I’m not going to phone her! She doesn’t know me, how can she? She has never tried to know me; she has not made time to see me, speak to me, get to know me. She wouldn’t know that if I call and say this or that hurts it means “I’m in bloody agony and about to throw up and pass out from the pain” nor will she know that I would still be able to walk/drive, despute the pain, because when you’re on your own you don’t have a choice; it’s carry on, in pain, or starve!

Dr Charlie commented again on how much better I appeared; that the Tamoxifen doesn’t disrupt my hormones and so mess my head up anything like the Zoladex/Arimidex did. It’s also the change wrought by having a consultant who treats me, and not just the cancer. He listens to what I say! He thinks my views are valid! He speaks to me like the intelligent, educated, mostly rational person I am! And no, I don’t fancy him! Apart from the fact I clocked the wedding ring the first time I met him, I think it would just be too weird to fancy someone who is groping your boobs on a professional basis! But he is a lovely consultant and I feel very confident that I am getting not just the best treatment, but the best treatment for me.  We are going for another month of the Tamoxifen but the day when I change to chemo is coming ever closer. Dr Charlie is still talking Capecitabine, which is an oral chemo; just a couple of tablets a day, rather than the more traditional infusions. He said he’s a big fan of Capecitabine and feels it’d be a much more appropriate drug for me as it’s less disruptive to daily life and so gives me the best chance of staying in work so he’s given me homework of reading over the information sheet I was given a while back.

And finally Cyril? And finally, Esther – I’ve had an invite to a Breast Cancer Care function, and a night at Kathryn’s on expenses! They are launching their Standards in Care for People with Secondary Breast Cancer. There are going to be a couple of speakers, including a so far un-named Patient; what wouldn’t I give to be asked to be that patient! But I’ll probably just be in the audience, heckling and scoffing the buffet! But I will attend, and I will be heard – I can’t justify whining if I don’t take the opportunity to promote change. Not one of the nurses I have met, with their various titles of CNS, breast care nurse, keyworker or numpty, not a single one has pointed me towards such sites as Breast Cancer Care’s, nor seem to be aware that my right to work is protected by the Disability Discrimination Act or even asked if I’ve claimed my MacMillan grant. If they don’t know of these things, just what realistic support can they offer? One Stealth Nurse cannot possible support every single patient with secondary breast cancer, seen by the Marsden – why is she not pointing patients to where else they can access information and support? But then, we are talking about someone who finds remembering to switch her voicemail on a little tricky!

Maybe I’ll become a breast cancer pioneer; storming the Castle of Indifference to raise a Standard to Real Support and Appropriate Care. But I’ve got to clean out the rabbit hutches and push the hoover round first!

It’s life, Jim…

Harold Wilson said: A week is a long time in politics, well 4 weeks is an eternity lumpyboob-itics! Still another couple of weeks to go before my next scan, and then another week or so before I get the results. I did, finally, get to speak to the CNS Stealth Nurse (with ninja skills; she can pass through a hospital without being spotted) – she’s going to sort the paperwork and have the forms waiting for me, so I can have my bloods done when I go for my bone scan, and then get all results together.

She also made the right noises about the fact I couldn’t get hold of her – she thinks maybe the person who she shares the office with switched her phone to “divert” while CNS was off sick. Err, why would anyone do that?! Why was her voicemail not on? For over a week? She said she was only off for 2 days, what about the other 5, when I couldn’t get hold of her? And I could practically hear the sad face and head tilt, over the phone! She had better stop treating me like some fragile little fainting blossom or we will be having words.  Not that I expect to speak to her very often – which is a good job, if she never answers her damned phone! She’s giving her standard response to someone newly diagnosed and totally failing to clock that I’ve been dealing with this for nigh on a year now.

Strange to think I am approaching the first anniversary of being told the cancer was back – and just past the first anniversary of lumps appearing in the breast. I am trying to compare how I feel now, physically and mentally, compared to a year ago – I can’t really spot any differences. Do I get tired? Well, when I do a 12 hour day, cycle a dozen miles or so, bounce around a couple of classrooms, run round a playground or two, then go back to the office for a few hours, before going out to buy breakfast for 200 – yes, I can be a little tired by the end of the day! Is that ache in my hip cancer or degenerative disease? Dunno, does it matter?!Does my back hurt because of lesions or because my memory foam mattress has amnesia? Again, what difference does it make? I don’t feel anything is restricting me in anything I want to do.

I’ve arranged for my project manager to come down in a couple of weeks too – he needs to see for himself how high-energy I am and stop passing me over for promotion. I’ve put in a couple of job applications too, just so he’ll get a bit of a wake-up call, when the requests for references come in. I was stuck with a dilemma, with those application forms – do I describe myself as “disabled” and get a guaranteed interview and a label as “Cancer Girl” or do I tick the “No” box, but then have to explain why I need so many days off for hospital appointments if/when I do get the job? This time, I took the “No” option, but I might tick “Yes” on the next ones, just to see what difference it makes. I’m not sure I really approve of positive discrimination, any more than negative discrimination: Why should Person A, who meets the Essential Requirements of a job description, get an interview when Person B, who also meets requirements, doesn’t, just cos Person A’s cells don’t know when to stop reproducing? I don’t see how that makes them any better suited to a job. If an employer really didn’t allow a candidate’s disability to influence their decisions, there wouldn’t be that page on the application form. Same with the ethnic monitoring bit – how is the colour of my skin, religious beliefs or sexual orientation relevant to anyone except me and my nearest and dearest? Why does every HR department of every organisation I’ve ever worked for need to know? Here’s another Harold Wilson quote : Everybody should have an equal chance – but they shouldn’t have a flying start.

Anyway, rant over! When I go for my bone scan, I’ll have 2-3 hours to kill, while the radioactive isotope seeps into my bones. I don’t plan on the Marsden’s carpark benefitting financially from that enforced wait so – anyone got any ideas what I can do/where I can go around the Sutton/Redhill/Croydon area for a couple of hours? I tried to arrange to meet up with a colleague (which would also mean I could claim my travel costs on expenses!) but she, most inconsiderately, had already booked work in to her diary! So, if I can’t find some work to do, it’ll have to be unadulterated pleasure – any suggestions?

And, as the Bank Holiday weekend stretches in front of me, I’ve got housework and gardening and a gym induction in front of me….hmmm, sounds like a “normal”, not a “disabled” person to me - And maybe that’s the trick: Everyday I get up; go to work; eat, sleep and avoid the washing up ’til new life forms appear; just live the life I’ve always lived. And until I absolutely have to, I don’t intend to do anything different. It’s my life and I quite like it – I think I’ll keep it!

Amber just tried to delete the whole post! Luckily it gets automatically “saved”, as I write, so I was able to retrieve it – phew! What a loss to the world of online literature that would have been!

What’s the difference between a “Keyworker” and a chocolate teapot?

B*ggered if I know!

“Any problems; any worries; call me. I’m your first point of contact. Here’s my card, I’m here to help”

Except you don’t answer the bloody phone and don’t have voicemail! How the blinking heck is that meant to be of any use to man or beast?! How can this week’s keyworker/clinical nurse specialist/ lead breast care nurse sort out my problems, if I can’t even speak to the flipping woman?

Grrrrr!

And why is it down to me, to flag up to them that blood tests at the same time as scans is A Good Idea, as then Dr Charlie gets all the results together?

I am fed up! And the fairies have forgotten to do my housework again. And my crappy rented house is falling down and I can’t afford to buy. And I’ve no chocolate!

 

Now imagine what I was like when I was menopausal, AS WELL!!!