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!