82. Saved by my GP

When I look forward, towards the year's end, I see the road of recovery. It has a big sign on it, saying Strength This Way.

I think I've put that sign up myself. It is surrounded by friends and relations cheerfully pointing ahead, go on, off you go, you're all done with the chemo, you must be feeling happy, the only way is up.

Well, that's the problem. I do not have the strength to go Up. That road ahead feels like a muddy slope. Given my tendency to lay down whenever my skeleton refuses to stay upright (when sorting out the washing, say - my younger daughter found me outside her bedroom, merrily stretched out on her pile of clean clothes*), a muddy slope quickly turns into a slippery slope. With me sliding down, not up.

*(a) Yes yes, I know I shouldn't be sorting out the washing. My husband has already told me off. (b) My younger daughter doesn't bat an eyelid at this kind of thing. She had come to show me what she'd made, and just sat down on the floor beside me, so we could carry on the mother-daughter thing regardless.

But when I turn round and look back on the year behind me, it is perhaps not surprising that I feel so utterly exhausted.

These are of some of the things I see.

2 operations

3 trips to A&E
4 hospital admissions

7 scans

8 visits to the chemotherapy lounge (including a couple of visits to sort out infections)

9 bags and 9 large syringes full of Vile Intravenous Poison

33 self-administered immunity-boosting injections
50+ waiting rooms

(That's not even counting 3 emergency trips to Holland, 9 days at a death bed, umpteen phone calls/skype calls/emails, 1 funeral.)

Endless travelling to hospital, travelling home, recovering at home. Physical and mental preparation; physical and mental recovery time.

Then there was a never-ending string of decisions to be made, to be explained (and, at times, defended) to doctors and nursed and friends. Should I be reconstructed/irradiated/wigged/drugged? Should I blog/work/go to A&E? Should I have a mastectomy or sit with a dying mother? (That particular one was definitely the worst of all.)

It’s no wonder my skeleton sometimes won’t hold me upright. Quite apart from the latest chemo-knock-out (and that's cumulative, getting worse with every cycle), looking backwards at that list of body-crushing, life-changing events is enough to make me want to lie down in a darkened room.

But I don’t think that’s the only reason why I felt in no fit state to make my planned return to work this week.

There is something hugely disconcerting about being sent off after the final VIP session and not have a follow-up appointment until two months later.

Actually, it’s not even a follow-up appointment. It’s an appointment to plan the fourth and final part of my treatment schedule that reads (1) surgery (2) chemotherapy (3) radiotherapy (4) hormone therapy. I think (4) is with the same team as (2), but I’m not even sure about that.

So here I am, feeling dreadful, but with nowhere to go.

I’ve had three different consultants: (1) surgeon, (2) oncologist, (3) radiotherapy expert. I haven’t yet met (3), only her junior team member - who was, it must be said, excellent. In fact, most doctors have been excellent. The surgeon was outstanding.

But the thing is, there have been so many of them.

They say that in hospital, your liver goes one way, your bones another, your heart another. You enter a whole person, and out comes a patient in body parts. Well, it seems that even your cancer cells get split four ways, needing four different specialist teams:

• one that cuts them out
• one that poisons them
• one that zaps them
• one that stifles their growth.

You’d have thought that these teams work seamlessly together, and I’m sure they try. But if one team cannot answer my questions that are more within the remit of another team, and it takes months before you get to see that other team, the word "seamless" doesn't really spring to mind.

There are, of course, the breast care nurses. But even these are split between surgical ones and chemical ones: no-one has followed me through.

I was unlucky with Breast Care Nurse 1 (the surgical one). But whilst Breast Care  Nurse 2 (the chemical one) has been warm and supportive, she has also been largely absent; on holiday, off sick, that kind of thing. If you don’t ask, you don’t get. And I won’t ask. What is there to ask? Practical stuff, yes (“Where is my radiotherapy appointment/wig appointment/breast prosthesis?”) although I am now left hanging with a few questions I forgot to ask (“When can I stop worrying about picking up infections and having to rush into A&E at the slightest hint of a fever? When can I go to the dentist again?”)

Once, Breast Care Nurse 2 rang me at home, just a couple of days after my first dose of chemo. "I like to see how my ladies are getting on," she explained. I appreciated it hugely, and I understood her need to see how I was, because people's responses to chemotherapy are so unpredictable. But I haven't heard from her since.

Oh, how I would have appreciated a phone call at the end of the last chemo. Before the distant End Of January Appointment. Better still: regular contact that doesn't need any initiative from me. Because believe me, as a cancer patient you are just grateful for what you get. You don't dare ask for anything more. You know resources are scarce and nurses are busy.

There seems to be a strong emphasis on physical coping. When doctors from the chemo team ask me how I've been, what they really mean is: How bad were the side effects? They ask, because the next dose of chemo needs to be prescribed and you don't want to knock the patient out completely. Now that there is no further chemo, there is no need to ask me how I've been.

I understand that doctors might not have time for the whole patient, only for the cancer cells that need poisoning. But I had vaguely thought that the breast care nurses would pick me up, follow me through. Maybe they, too, simply don't have the time? (Mind you, a five minute phone call once a month would have sufficed.)

I wonder whether, as a competent and smiling patient, I am simply not on the list of priorities. She's fine, she is coping.

I have the sinking feeling that even though I have received intensive and excellent cancer treatment over the course of the past nine months, there is nobody at the hospital who has followed my story.

Nobody who knows me.

The surgeon came closest, but of course she had to hand me on. The oncologist is nowhere near “knowing” me. I’ve seen her three times, including a lengthy assessment-and-talking-things-through session where I thought she got to know our story; but the last time I saw her, it was clear she didn’t really remember me. I had to remind her that I’d had bad reactions to the chemo and that I’d been admitted to hospital (even though she had come to see me on the ward just a week earlier).

Don’t get me wrong: I understand how that happens. I’ve been there myself. You see so many patients, so many families, it can be hard to put names and faces and stories together.

I’ve been in situations where I have sat with newly bereaved families, talking to them for ages, having cared for their dying relative; then, when they walked onto the ward a few weeks later to say hello to the nurses, I couldn’t quite remember the details. But you find ways to remember, and I always tried, making small-talk until they give you a clue and the pieces fall into place. (“So good to see you! Now remind me, how long ago was it…”).

Surely, the patient's notes provide such clues? When my consultant calls me into her office, I would hope that she would at least have a quick read of the notes to remind herself about me.

I remember the absolute lowest point in my dealings with the hospital. I've blogged about it before. I had arranged to see Breast Care Nurse 1, but when I talked to her, she didn't know my exact diagnosis, nor the identity of my surgeon (and she didn't have my notes with her so she couldn't look it up). It took me weeks and weeks to get over the distress of feeling so utterly unimportant.

So here I am, feeling weak and exhausted and rather dazed by this hospital whirlwind that has now come to a temporary halt. (I’m not counting next week’s radiotherapy planning appointment. That’s a different hospital altogether and feels like a new journey.)

I am feeling vulnerable and yes, weepy. I haven’t felt weepy for some time (not since That Wood!), but I feel it now. What I need, I realise, is not just someone with whom I can talk about the wisdom of going back to work.

I need someone with whom I can talk through the whole sorry saga. Me having cancer, what it means, how I cope, why I wobble, what holds me up.

A counsellor perhaps? But no, the very thought of having to explain myself to someone new is too exhausting for words.

I don’t want to go to a Cancer Support Centre either. I’m not sure why not. Perhaps it’s an on-going reluctance to be the recipient of a service where I could so easily have been the giver, the therapist, the nurse. After all these months of being a patient, I still find it hard to identify myself as a patient in need of support.

What I need is someone who knows me.

In particular, I need someone who can relate to me being a health care professional with cancer; me being someone who always props other people up. I need someone who understands that the weepy business is temporary but necessary;  someone for whom I don’t have to pretend that I am fine, and who understands that actually, even when I feel I am falling apart, I am fine.

Most importantly: I need someone who can bear my distress and whom I don’t have to protect from it. (That disqualifies the entire contingent of family and friends.)

Enter my GP. (Non-UK readers: that's a family doctor.) 

I have been extraordinarily lucky with my GP. Or perhaps it wasn’t luck? When I moved to Clapham 20 years ago, I asked the palliative care nurse covering this neighbourhood to tell me where to find the best GP. I knew from experience of working with the GPs of my dying patients that whilst most are wonderful, not all of them are able to listen to patients or take advice from specialist nurses. I wanted the kind of GP you can talk to. The kind who includes patients and families and other specialists in the healthcare team. Fortunately, that’s what I got. Two of them, in fact – one of whom is now retired.

My relationship with my GP is an unusual, semi-professional one. We keep doctor-patient boundaries, but I think we both know that we could, quite gladly, be firm friends. We bonded years ago over the discovery that she, like me, had once lived in a L’Arche community together with people with intellectual disabilities. When I turned 50, she came to my fundraising birthday bash.

We usually over-run the allotted appointment time, as there is always so much to talk about. In fact when I went to her with my newly found breast lump, we spent almost all of the time talking about other things. Fifteen minutes later, I had to think for a minute before I remembered why I was actually there. (Oh, yes, breast lump. Just a small one, it's probably nothing.... Ha! Soon, there would be no need to complain that my healthy constitution means I just don't see her often enough.)

During my illness, we have kept occasional telephone contact, and she has once visited me at home. Nothing too involved: it is hard for GPs to know how much or how often to contact patients who are under hospital care.

Given this week’s three W’s (Weak/Wobbly/Weepy), I decide it is time to see her. It is Monday morning. I try to book an appointment on-line – you can do that these days. Hallelujah, miracle, a slot is available on Monday afternoon! Quick, book it! But wait, oh no, that’s not today, it’s Monday 5^th January, in four weeks’ time.

FOUR WEEKS. That’s her next available slot.

A phone appointment then? Thursday, that’s the next one. This week, yes, but now that I’ve decided I need to talk to her, I can’t wait. Even that little word on my screen, Thursday, makes me cry. This is ridiculous.

I ring the surgery.

“Sorry, she is not here today. Yes, she is here tomorrow. But no, she has no availability. No, she can’t even ring you, she’s fully booked.”

“Please,” I say, “please, could you leave her a message? I’m sure she will want to know that I’ve called. She always says that I can ring her any time and she’ll fit me in.”

The receptionist agrees, but warns me that she cannot promise anything. I just about manage to thank her politely without crying, but once I’m off the phone, I put my head on my arms and sob. My husband looks on in alarm. Clearly, something needs to be done about me.

I am taking no chances with the receptionist’s promise. I text my GP (yes, I’ve got her number), apologising about the impertinence. This is, after all, her day off. She rings me and offers to come and see me at home the following afternoon (and this, remember, is someone who doesn’t really have time to fit in even one more phone call tomorrow), but of course I can go and see her instead. I am so, so grateful.

“I’ll give you a sick note for this week,” she says on the phone whilst I drip tears all over her day off, “and then we’ll talk about what else we can do to get you well again.”

So there I am, in her office, and within two minutes she needs to pass me the box of tissues.

We laugh a lot, too. (We always do.) We talk for almost an hour. She is always, always interested in all my observations about the NHS. She only needs half a word to understand my coping strategies, my emotions, my highs and my lows.

And she, as my GP, is the only one who can convincingly tell me that I should look after myself. It’s what everyone else tells me, too: my work manager (really, the only person putting pressure on me to go back to work is me); my friends; my family. But what does it mean, looking after myself?

I explain that every day, I have to decide whether to go for a gentle walk or swim (which helps with the side effects and always makes me feel better, but from which I then need to recover, so that’s my day sorted) – or spend a couple of hours at my desk (from which I also need to recover. In fact I currently cannot manage to sit upright at a desk for more than an hour at most: it’s that funny business with the skeleton’s refusal. I don’t think it’s made of bone. I think it’s been turned into rubber, and stretched a bit too far).

Then there is the need to cope with family life. My daily rhythm has been thus…

• Get up (takes several hours, what with cups of tea, shower, breakfast, back to bed to recover from tea/shower/breakfast).
• Do something (walk/work/stuff around the house).
• Lunch.
• Bed for several hours.
• During my Bad Week, that was it: bed for the rest of the day; perhaps emerge for supper with the family, which they (hopefully) have cooked. Nowadays, I try to be around when the children come home from school. You can find me in the kitchen, sitting for several hours, even cooking a meal (I’ve put a stool by the stove, so I can stir sitting down).
• After supper, I sign off.

Then there is work. I was due back at work this week (my plan, not my employers’). But if I work in the morning, I cannot have my exercise. If I work in the afternoon, I have to resign from family life.

For my GP, it’s a no-brainer. She spells out what Look After Yourself means. Three things matter, she explains: (1) getting well, which includes the exercise thing; (2) family, (3) work. In that order.

“You are just not strong enough to include work,” she says gently. “And you’d be no good at work if you started again now. It would take you so much longer to recover. You need to focus on yourself, and you’ll know when you are ready to go back to work." (This is true. Work this autumn, when I got round to it, has been a joy. Not a strain at all.)

"How would you feel if I told you that you had to go back to work next Monday?” she asks.

I think about this. “It makes me want to cry,” I say.

“Exactly,” she says. “And then you'll have to make yet another decision about whether or not to go back to work. Why don’t I sign you off work until the 5^th January, and then we’ll see. How does that sound?”

I try to answer her, but can’t. Instead, I reach for another tissue. She nods, satisfied. Enough said.

Now, how about my need to talk things through, occasionally, with someone who can take it and whom I don’t have to protect or support? What kind of person might that be?

My GP has been listening to my struggles to be a nurse-turned-patient over the past year, and thinks that as healthcare professionals, our support needs are actually quite different from those of other patients. She understands exactly why I don’t want to go to a place called The Haven, a local support centre for cancer patients. I don’t think I need a Haven. I need another professional - an equal - to walk alongside me, just occasionally.

It occurs to her before it occurs to me...

“Actually, why don’t you use me for that,” she suggests. “I can just book you in regularly for meetings like this.”

I look at her in delighted amazement. How wonderful. I feel better already.

“How about January?” she says.

I won’t need to come and see her that often. I know I won’t. Once every couple of months is fine. But oh, the thought of having someone who has followed my story and will keep following it… that is all I need to keep me going.

When I leave my GP with a big hug, I thank her profusely for making the time to sit down with me on such a busy day, at such short notice. I know how hard things are for GPs. They simply do not have enough time to fit in the ever-growing list of patients, the ever-growing list of tasks and demands that the government throws at them.

“Actually,” she says, “things like this are important. There is always more to do, and you can never do it all, but this kind of thing makes the job worthwhile.”

I suppose this is what sets them apart, the outstanding healthcare professionals: they want to be a doctor/nurse because they want to be with patients. In today’s ridiculously stretched healthcare system, the professionals who remember that calling (because that’s what it is) and act on it despite the pressures, are the ones who truly make a difference to their patients.

The hospital consultants may have saved my life, but this week, my GP saved me.

My wonderful GP