Bella or Vogue?

In the meeting with Current Oncologist after our frenzy of research I told her I had made an appointment to see Professor Hope on Harley Street. On hearing his name her eyebrows sharpened and she adopted a sceptical expression; her immediate concern was that he would charge us a lot of money, and that he would recommend a drug called Avastin which was as yet unproven and whose cost could run into the thousands. She certainly didn’t seem to be a fan.

I asked for her recommendations for second opinions and she gave me a list of names but said I was unfortunate because the following week was the American Society of Clinical Oncology (ASCO) annual meeting and many oncologists based in London would be in Chicago. It felt as though the progress we were determined to make was being frustrated once again.

Current Oncologist went over the list of questions we had raised in our email. She said that she felt we’d gone away on the previous visit with only the ‘headline news’. No shit. She seemed to think we’d simply blocked out the part where we discussed a treatment plan, which certainly didn’t reflect our recollection of events. Putting aside the urge for recriminations we then discussed a tablet form of chemotherapy called Capecitabine. If I were lucky I would tolerate the drug well, with few side-effects. The big bonus would be that I wouldn’t lose my hair.

My brother John had arrived from Australia and would stay for the next eight weeks while we formulated a plan.  As John, Tom and I sat in the waiting room in Harley Street there was a stark contrast with the central London hospital I’d been attending.  Pristine copies of Vogue and Tatler were scattered on the side tables; no piles of outdated Bellas and Take A Breaks with incomplete crosswords awaited this type of clientele.  I kind of missed those articles about how someone’s obese mother-in-law married her one-legged aunt. Of course anyone can get cancer, rich or poor, but you probably won’t be reading the same magazines.

Meeting Professor Hope for the first time, he shook my hand and told us how sorry he was. Despite his lofty position he seemed a genuinely empathetic person. His initial instincts were that Current Oncologist had put us on the right track with Capecitabine, but wanting to learn about all the options we asked about Avastin, the expensive drug Current Oncologist predicted he would try to ‘sell’ us.

He dismissed it immediately. “I’ll only ask this once, do you have enough money to go private?” “Not really,’ I replied. ‘But we could find the money if we need to.”

“In that case let’s not discuss money again. I’ll see you here and I won’t charge.  Now, let me think.”

He swivelled round in his chair, scratching his head and picking up the phone only to put it down again. He scrolled down his blackberry then tapped it on the desk. We were either watching a very convincing mad man or a genius at work; when you’re in my situation you’re really hoping it’s the latter. “Let’s see if there’s something a bit more funky out there,” he announced. He picked up his mobile and called a colleague who worked in research, explained my situation and arranged for me to go to a centre where they were doing trials on patients who had hormone sensitive cancers that had relapsed despite chemotherapy.

Professor Hope’s plan would be to start me on Capecitabine and in the meantime he’d arrange a couple of meetings with research centres to see if I could get on any trials as a back-up. If the Cape didn’t work there were alternative options out there.

Before we left we arranged to meet Professor Hope again. ‘I can’t do next week as I’m in Chicago,” he said. “But you’re lucky. The meeting next week will give me chance to discuss your case, get some new ideas.”

That kind-of sums up the difference between Current Consultant and Professor Hope. He saw the positive in a situation, he gave me alternatives, avenues to explore, a plan. Current Consultant had given me a death sentence and sent me away: there’s not a lot you can do with that, aside from give up. But with a course of action, with different options available, you have reason to hope and reason to keep going.

Our mindset changed, the world didn’t look pitch black anymore. When the three of us walked out of that building into the sunshine an enormous weight had been lifted. You can’t bottle that feeling. The future wasn’t written; we could yet play our part.

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7 Comments (+add yours?)

  1. Rebecca W
    Aug 20, 2011 @ 13:00:40

    I’m liking that Professor Hope. Beautifully written BTW. You have a talent for prose.

    Reply

  2. William Stone
    Aug 20, 2011 @ 13:19:27

    Hi Ellie,

    Whilst an unashamed admirer of the NHS, I would encourage you to beg,borrow and steal to be able to be treated as much as is possible in the private sector.

    I ‘ve had some experience of both and whilst the treatment is broadly the same in most instances,it’s the being treated and listened to as an individual aligned with the faster flow of progress that is the difference.

    I’ve always believed that finding the positives in any situation is the way to deal with that situation and having your medical advisors of the same persausion and prepared to tackle this illness for you is essential.

    The NHS can often make you feel as if you are just another anonymous face who is entitled to treatment under the ”Free” NHS and one can often feel that the consultant, or more often than not his lieutenant,is just ticking boxes before rapidly sending you off with a more informative Specialist Nurse,to enable him or her to get on with something of real importance.

    Reply

    • Ellie Jeffery
      Aug 20, 2011 @ 19:09:35

      Hi William,
      Believe it or not I am a massive fan of the NHS and am proud that Britain has a health service that is free for all, no matter what you earn or where you’re from. There have been countless kind nurses and doctors that I have met during my time in treatment on the NHS. I hold no grudge against my ‘current consultant’ either. It just turned out I had to go elsewhere to get the encouragement I needed to keep on battling.
      Thanks for reading and taking the time out to comment.
      Ellie.

      Reply

  3. Ann
    Aug 20, 2011 @ 16:33:00

    Unfortunately, the NHS treats us cancer patients as number crunching lists – all any of us want is to be treated with dignity, respect and to be made to feel human – because we are and our life is the most important thing to us. I am glad you have gained some ground with Mr. Hope (good name) and I have a gut feeling you’ll be okay. Remember, people also live with cancer, not just die from it. Good wishes, good luck, Ann x

    Reply

  4. Lucy.
    Aug 22, 2011 @ 14:14:13

    Hi Ellie,

    Delighted to hear that you are using your journalistic skills to bear – keep doing the research, be persistent, never give up and count on the fact that there are lots of people you matter to and that will support you with whatever you need, whenever you need it,
    Lots of…
    Lucy.

    Reply

  5. Sarah
    Aug 22, 2011 @ 14:29:25

    Hi Ellie – Glad I’ve stumbled across your blog. I too am living with secondary breast cancer. I was diagnosed with Her 2+ breast cancer last year at the age of 29…I have been on various treatments for the last year and two months and have recently had a full left mastectomy. Fun, fun, fun! I am starting a new course of drugs in the next couple of weeks…but am also trying to arrange to go on a charity trek to Machu Picchu..it’s always been an ambition of mine and I am determined to do it in October of this year all going to plan, if not maybe early next year. I take all sorts of natural products to keep my immune system ticking along…I really believe they work, although my Oncologist would probably disagree I still take them. Keep fighting

    Sarah x x

    Reply

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