Taking the smooth with the rough

It’s all gone rather quiet on the cancer treatment front: Zoladex injections and arimidex tablets continue; the diclofenac is certainly helping, though not entirely wiping out, the painful episodes; and the absence of any significant bone pain suggests the bonefos is doing its stuff too.

 

I’ve asked Great Western Hospital, Cheltenham General and my GP for all notes pertaining to my treatment – once I’ve got them all I need to think who to ask to go through them with me. My first choice would be my Dream Team of Old Jane and Dr Burt but am afraid Dr Burt might expect me to go to his former colleague, my current oncologist, Dr Kim. Except I’ve already tried to discuss the finer details of my care and condition with her and she seemed somewhat disinterested, declaring, “It’s ALL cancer!” and refusing to say anything more when I tried to engage with her.

 

Prospect Sue is coming on nicely at the Ruth School of Cancer Care – she successfully passed on my work/finance related queries to the hospice Welfare Advisor who, in turn, read up on the Disabilities Discrimination Act and found me a couple more grants to apply for. I used the same site to find some more so I now have FIVE (count them! Five!!) different organisations I can apply to for financial assistance. So that should keep the wolf from the door and maybe get me a Christmas holiday!

 

Prospect Sue also spoke to my GP about a GP Referral to subsidise gym membership – on the grounds that I found it of great physical and psychological help last time I had treatment for cancer and I can’t access such support as the hospital/hospice offers because I’m at work! My lovely lady GP is more than happy to oblige and is writing to the Primary Care Trust for funds.

 

I’ve had another session with Diana the psycho and talked about my concerns regarding how I personally have been treated, and how my cancer is being treated at Cheltenham. I’m not eager to keep changing hospital/care team, just for the sake of it, with no certainty that treatment would be any better elsewhere so, despite my reservations, I’m staying with Dr Kim, New Jane and the Gloucestershire NHS trust, at least until September. I’ll decide after that appointment whether I want to persevere or not; whether there is enough good things happening to out-weigh the bad. Though as and when I need chemotherapy I’m definitely going elsewhere – no way am I prepared to hang around a hospital waiting room for 10 hours or more, for a 1 hour or less infusion of chemo drugs! Whatever I decide, Diana the Psycho says I can continue to see her, which is nice.

 

The only other news is I’ve been asked to take part in a photo shoot! Not just me; they’ll be lots of other peeps there too: A few weeks back I signed up the Breast Cancer Care’s “Secondary Breast Cancer Taskforce”, reasoning I can’t really moan about the lack of support/services for people like me and then pass up the opportunity to do anything about it! Breast Cancer Care seem to be the only breast cancer charity who have identified that women with secondary breast cancer get nothing like the same level of support and advice that women with primary breast cancer (ie the type you can be cured of) get and yet, as we have an incurable disease, probably need rather more! Anyway, they have set up a Task Force and are holding a conference for Health Professionals in November and are doing a photo shoot for all the literature for their campaign next Thursday. It’s to be at an as yet un-named London location and we’ve been asked to bring something to represent what we normally do – the focus being, women with secondary breast cancer can still do “normal” things – so I’m taking my bike and I’ve asked work if it’s ok for me to wear my corporately branded work clothes. I want to give the message that not only can I still ride a bike; I can also work and, what’s more, do a physically active job.

 

And err, that’s it. No big dramas; no triumphs or disasters; some slight headway made but no major breakthrough. Still here, taking the smooth with the rough!

Green fluffy knickers!

In the last week I have seen – in order of appearance – New breast care nurse, Jane (not to be confused with old breast care nurse Jane!), Prospect Sue (by appointment, this time), Diana the Psycho(logist) and Dr Kim.

The meeting with New Jane was good – I talked; she listened. Made the right noises and I was left feeling she agreed with what I’d said about needing an advocate (her); needing someone to oversee/co-ordinate my whole care package, ie within and without the hospital (her, again). That I wanted a breast care nurse in with me, when I see Dr Kim (her, again), and that I want to be supported by people who accept I am living – and working – with cancer (that’ll be her!); that it is a part of my life but not the whole of my life. In order for her to be in with me when I see Dr Kim, I would need to change from her Cheltenham clinic to her Gloucester clinic. Jane said she would email Dr Kim about that but said I should ask her too, when I saw her.   

My friend Emily came with me – first time EVER I’ve had a friend by my side in a consultation, in the whole 4 years of my cancer journey. And she was absolutely brilliant! She reminded me to check my Wish List; took over and read from it when I came over all unnecessary; and was my personal advocate: “What Ruth wants…”, “What Ruth needs…”. Fantastic! Jane thought so too and took Emily’s contact details, along with my nextofkin, my GP, my practice nurse, Old Uncle Tom Cobley and all….!

Then came Prospect Sue; still flapping her hanky and not really of any real use to me. I had to tell her 3 times in the space of about 40 minutes that I work full-time. I asked her something I actually know the answer to, pertaining to the Disability Discrimination Act and my right to work. I didn’t expect her to know every last detail but I did think she ought to have a working knowledge of a law that protects exactly the people she works with! She didn’t. In fact, she couldn’t answer any of my questions, but “knows someone who can”. All a bit wet and rather frustrating as my queeries get passed from one person to another, like a game of Chinese whispers, no doubt losing context and their original meaning in the process. However, I have a clearer idea of what therapeutic/practical help and support I want so gave her a shopping list to go away and sort for me. I also have a Get Out Of Jail free card to not have to bother with the drippy hanky-flapper again as I work full time and so won’t be reclining on the sofa, sniffing my vinaigrette and watching Flog It, with nothing better to do than wait for her to call round.

Then I had two appointments in one day, yesterday; with Diana the Psycho at lunchtime and then Dr Kim in the afternoon. Diana was fine; we talked about me being too well to access support services and how the emphasis for advanced cancer treatment is all wrong and still so much focused on dying, rather than living, with cancer and we have another appointment in 10 days, as I’ve found I can only go a week/10 days without input before I start to lose it and climb the walls and eat soap and wear my underwear on the outside.

Then I met with Dr Kim. I had arranged the meeting, supplementary to the scheduled check-up in September, to go over the results of all the tests I had at Swindon. I phoned her secretary and asked, explicitly, if Dr Kim had all those results and, if so, could I have an appointment to talk with her about them. The secretary gave me an appointment and promised she would ensure Dr Kim had read the notes before she saw me. You can guess where this is going, can’t you?!

I go in to see Dr Kim, she asks how I am and if I’ve met with Diana yet – I say it’s going well and I feel I’ve finally got to the starting line with treatment – working to the assumption she had all my results and was going to share them with me. She then proceeds to do a quick examination – actually, for the second time (bearing in mind I’ve only met with her twice!) she said to strip off THEN said she needed to get a ruler and expected me to stand in the room, with my boobs out, and the door open! Err, I’ll just wait til you come back, shall I?! Anyway, no measurable change with the breast lump, though we both thought there are more soft bits than before. I then ask about the results – Dr Kim says she’s got a disc of the bone and CT scans, only got it on  Fri (this was Mon), hasn’t loaded it on to a computer yet, hasn’t seen it, can’t tell me anything. I said but that was the whole purpose of the appointment,

 ”No, Ms James, that is NOT the purpose of this appointment, this appointment is to check the progress of the breast.” – A patient, wanting to know what the hell is going on? The very idea!

“Oh no it isn’t! I made this appointment specifically to go through the test results with you. The appointment to check treatment progress isn’t until September”

 ”Oh, I thought it was a bit soon to see you again, I’ll go and see if I can load this disc onto the computer” and while she was out of the room I heard her on the phone, asking Swindon to fax the biopsy results to her, though she later claimed she requested all notes from Swindon 3 weeks ago. A likely story! What a waste of time and effort! A bad case of Consultantitus; the patient is an annoying distraction from the more important, but rather boringly standard, disease!

I complained that, two months on and I still don’t know the extent of the cancer “Yes you do, Ms James, there is no doubt that unfortunately the cancer has spread”, said in her best patronising tone. I’m not in bloody denial about that! I just had no information as to WHERE it had spread and what the significance/seriousness of that might be! It’s like telling a woman she’s pregnant but then not bothering to check just how far on she is or if it’s twins or triplets of a small giraffe because, give it a few more months, and we’ll find out! So I stamped my foot and she found me a computer and I finally got to see where in the bone the cancer is.

Two areas are of particular interest to me; my right shoulder and my lower back. Both are the site of pre-existing conditions but trying to get Dr Kim to listen to me was a futile exercise – “It’s definitely all cancer” was all she would say. I had problems with my right shoulder some 2-3 years ago, while I was still taking tamoxifen and all was thought to be well. I wanted to know if the pain/weakness I had then was actually lesions forming “Impossible to tell” was the answer – so, what are you saying? Maybe it was, maybe it wasn’t? And if it wasn’t lesions then, why is it now? And what about my lower back? That’s been a mess for years – why does everything the bone scan show HAVE to be cancer? As I understand it, it just shows where the bone density is different so it could be osteo-arthritis, osteo-porosis, bone lesions or a crunchie bar! Assuming everything is cancer is just what the radiologist at Swindon did with my spotty liver, taking a very narrow view and not seeing the bigger picture. For God’s sake people! Open your eyes and start treating Me! Ruth! Not a collection of symptoms, all seen in isolation!

Another interesting point is that the usual spread of the disease (hurrah for Google) is to the ribs (yup, got lesions there), sternum (nope, don’t think so), spine( yup, two or three spots plus the lower back), pelvis (yup) and then arms and legs, which are unaffected. NOT hip and shoulder joints, which ARE affected with me. I’d like a bit more information/investigation into the how and why of that, too.

I told Dr Kim I’m still not happy about going so long between check-ups “That’s what you’re seeing Diana for” – Oh right, so you only want to treat the cancer, and not the patient. That’s useful to know!

I told her AGAIN my breast is painful, described the various pains and discomforts and exactly what part of the breast generates which types of pain, and which pain killers I’d already tried, to no avail – so THIS time Dr Kim prescribed me some diclofenac (voltarol). I practically had to beat her over the head with my boob before she’d take note!

I asked for copies of my notes – she’s fine about that, I just have to apply to the Department manager. I’ll write and ask Swindon too – bet it doesn’t take three bloody weeks for them to send them me, like Dr Kim has claimed!

And I asked to change to the Wednesday clinic so I can access the breast care nurse support – again, no problem, but no mention of Jane having already asked this either. So either Jane didn’t ask or Dr Kim doesn’t check her emails!

So I left Cheltenham heartily pissed off and no longer on the starting line. Still in the changing room, in fact and some bugger’s nicked my other trainer! But I have my green, fluffy gym knickers on, so I’m ready for battle! I don’t doubt Dr Kim’s ability as an oncologist, but her communication skills are not of the best – with me, her secretary, the breast care nurse – lots of missed information between each and all of them. Which is frustrating and more than a little wearing. And time consuming. I am tired of repeating myself to different people, it is even more annoying to have to repeat myself to the same person, because they didn’t listen the first two times!

As an addendum, New Jane phoned today, to ask how the appointment with Dr Kim went – This is a Good Thing; the kind of support I want and expect from my breast care nurse. AND, when she didn’t get me, a) tried the other number and b) assumed I was out on my bike – actually I was getting my hair done, but, either way, I wasn’t at home with my weak tea and a Mills and Boon from the mobile library! She says she’ll call tomorrow so we’ll see if she suggests what I hope she’ll suggest; that she’ll chase all my test results and go through the results with me. And maybe I can get someone to look at my back and shoulder again. And to help me find my other trainer. And don their own green fluffy knickers and take up the fight with me!