Cleaning the carpet

Yesterday I cleaned the lounge carpet with a scrubbing brush and laundry detergent – like you do – and thought it a fitting metaphor for my cancer “journey” (as the health professionals so quaintly call it); doing the best I can with inadequate resources and bugger all help!

With the support of my practice nurse, GP and psychologist – in fact they each suggested it, independently of each other and without prompting from me – I am actively pursuing a return to Dr Charlie, the first consultant I saw at The Marsden and the only consultant, out of 3 hospitals and 5 clinics, who I felt listened to a word I said and even thought maybe I had a valid point or two to make! This has NOT been made easy for me:

First my GP wrote directly to Dr Charlie only for the letter to disappear into some black hole of the hospital’s internal mail system; then my practice nurse, Helen, spoke to my Clinical Nurse Specialist. The CNS’s response, bearing in mind this is the person who is meant to be my advocate and to facilitate my treatment, was to say Dr Charlie was mostly involved in research, only had one clinic a week and that was in Sutton. Although I spoke to CNS a week later she made no mention of my changing  to Dr Charlie’s clinic, or even having spoken to Helen at all – if Helen hadn’t phoned me I wouldn’t have known any conversation about me and my treatment had taken place!

Next I got a call from CNS to give me the date for an MRI scan – mysteriously a month sooner than she’d told me it would be. No explanation, no reassurance that it was just routine or in response to my repeated requests for comparative data or anything, just “This is the date”.  But she also said the letter from my GP, to Dr Charlie, had ended up with her. Why? Exactly?! And she only mentioned it in reference to an already-booked appointment with Dr J – did I still want to keep that appointment (to get the results of the next round of scans), as Dr Charlie wasn’t available that week. Obviously I asked when Dr Charlie WAS available (knowing when he wasn’t isn’t an awful lot of help, you incurable nitwit!), but she couldn’t tell me and suggested I call his secretary and no, she didn’t have the secretary’s number!

Now, you know what I am with phone calls and just the thought of phoning The Marsden’s switchboard to ask for a number to then call and try and explain why I was making my own appointment…..! So my lovely friend Emily did it for me, bless her!  And it was a long and convoluted trail, involving both Dr J’s secretaries (there’s one for each of the two sites the Marsden operates over) and no doubt endless explanations of the same thing. The Sutton secretary, Ann, who is actually Dr Charlie’s secretary too, said there should be no problem and pencilled me in for an appointment, but said she’d need to sort out some admin with the other sec, but would send confirmation of the appointment. Ten days on and I’m still waiting…

Then I got a rather snotty letter from Dr J – actually it’s a copy of the letter he wrote to my GP, in reply to her letter to Dr Charlie. Still with me?! It was really just a standard courtesy reply, saying very little, but managing to imply I have been kept fully informed of my treatment regime: What, when; where; why; clear indications of progress; blah, blah, blah; and I’m just making a fuss about nothing and should just shut up and go away and let the clever doctors get on with it! It was quite a clever letter really – the only measured improvement is in the lesions on the liver, but letter managed to imply that the breast and the bone have shown improvement too when my argument AGAINST the current hormone treatmnet is that they haven’t! In fact, I think there has been a slight deterioration in the breast. And, of course, none of the hospitals have told me how long before I can expect to see a change; how long I should just put up with the pain and discomfort in the breast; how long I should be sent away for 2-3 months at a time with no way of measuring my response to treatment. And beyond mutterings of “menopausal symptoms”, none has talked me through what side effects to expect. Only I haven’t actually had a menopause before so have relied on my own internet research to ascertain what are “menopausal symptoms”, what are cancer symptoms and what are anxiety/stress symptoms!

Well, I’ve been on the hormone manipulation, and mega-strength anti-inflammatories, for 8 months and I think that’s quite long enough to have given it a decent chance to have a positive effect. And it hasn’t. New lumps have developed in the breast and, although the area of skin deposits is less raised and less red ( I think solely as a result of taking the anti-inflammatories), I think it covers a greater area. Having taken diclofenac (voltarol) for 4-5 months it ceased to be effective and I changed to arcoxia but if I don’t take some kind of anti-inflammatory the pain is akin to a narrow gauge steel knitting needle, heated until it is white hot, and then threaded through the nipple! With them, the breast is mostly just a bit tender and uncomfortable and only occassionally painful.

And the side effects are no fun either – night sweats and hot flushes are the least of it! I have been both premenstrual AND menopausal at the same time; the oestrogen deprivation makes my joints stiff – my hands don’t want to clench or grip and my ankles don’t want to flex – and  I ride a bike for a living; and just to be at this level of anxiety the whole time – I only sleep if I have a combination of anti-anxiety meds, sleeping tablets and a judicious amount of alcohol; my neck and shoulders ache from being tensed the whole time; my concentrations levels are….ooh look! Shiny!

Yet, despite all this – the cancer; the treatment; the side effects; the piss poor communication; a CNS with short-term memory problems for  keyworker – I have continued to work full time; applied and been interviewed for two promotion opportunities ( was unplaced for the first one but allegedly came second for the other); and am actively trying to forward my career AND my cancer treatment. I may only have a scrubbing brush and a bottle of Bold, but by God, the carpet’s clean!

 

Postscript: 5 weeks after my Gp wrote to Dr Charlie, 4 weeks after my practice nurse spoke to the CNS, 3 weeks after Dr J replied to my Gp, 2 weeks after Emily spoke to Dr Charlie’s sec, 1 week after I spoke to her and about an hour after I cried down the phone to someone else in the same office, I have been given a date and time for my appointment, though they can’t guarantee it’s Dr Charlie I’ll see. So much for “Choose and Book” more like “Choose and be messed around until you give up!” I still won’t really believe it until the letter comes through my door. And then I’ll have to start the same pursuit for a keyworker who I feel confident speaks for me and voices my opinions with clarity and conviction.

One more phone call and a fax later and I FINALLY have the confirmation – I really do have an appointment!

And the worst of it all is; all I’m asking for is what the hospital – any hospital – claim in their Mission Statement they do and the NHS identify as Best Practice! And not asking for any special treatment, I just want the right treatment for me.