Ruth A James’s Weblog

an everyday story of breast cancer

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!

August 22, 2008 - Posted by Ruth James | Cancer | | 7 Comments

7 Comments »

  1. It may have gone quiet, but things are beginning to happen.Thanks be to CC you shouted at the right people and they are now listening.
    Hope some financial support will be made available – A Holiday is a Damn fine Idea. A word of advice?…Don’t go Camping in the rain. *snerk*

    Comment by tidmum | August 22, 2008 | Reply

  2. Hi Back from hols, just brought myself up to date with blog. Glad to see your fighting spirit is still afire… but peed off that you need to fight so much just to get a few, (you would think) answers to typical patients questions. What sort of service are people getting who are unable to speak up??????

    Comment by Angela Morgan | August 25, 2008 | Reply

  3. That is the scarey part: I’m not the average patient;I’m a lot younger; physically fitter; well-educated; and pretty damned assertive, when I have to be. What about the little old ladies, too scared to speak up, and their little old men husbands who can’t bring themselves to talk about “women’s things”, like boobs?! That’s why I want to make a big noise with this task force.

    Comment by Ruth James | August 26, 2008 | Reply

  4. Caught up with the latest….how was the photos shoot – surely they can see your potential in glamour and have offered you a contract??
    Keep chuffin’ and let me know when you’ll be “oop North” again xx

    Comment by Sarah | September 1, 2008 | Reply

  5. Dear Ruth, this all sounds so very complicated. I’m so concerned = as in – terribly worried – that you are not able to find the right care.

    Did you really like the place you were before better? I just don’t EVEN know what to suggest that could possibly help, but perhaps if you could get back there, it would help.

    I’m not sure I like the sound of what Dr. Kim is doing at all.

    Comment by JanetCanHas4Kittehs | September 13, 2008 | Reply

  6. Hey, Ruthie!!
    I’m reading! Glad you’re working and fighting still. Love and hugs from us all at Beaverwood. xx

    Comment by Sue Henesy | September 13, 2008 | Reply

  7. As with everything about the nhs it doesn’t seem to be what it says on the tin! Patient access… hmmm, rights to information…hmmmm. and all at the time when you would like support. Keep positive kid , like i know you will do anything else. How was the photo shoot?

    Comment by Jo | October 9, 2008 | Reply


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