Meanwhile Julie has been keeping me distracted: another crisis, written about in more detail on my JuliesMum blog (for those that like to read these details). But so far this week, I’m glad to say, she has managed a wobbly calm.
You should be careful what you wish for. Told that I had to have an operation to remove part of my thyroid, I was frustrated to find that I would have to wait for some unknown period of time. I was warned that it would take two or three weeks for a letter to arrive from the surgeon, then an appointment to meet them, then the operation itself at some undefined date. Clearly there was no urgency in my case, but the wheels of the NHS did seem to grind exceedingly slow. In the meantime, so many things – work, holiday, friends – were piling up because I didn’t have the faintest idea when to expect my operation.
Sure enough the letter finally arrived, telling me to phone for an appointment. I phoned and phoned and left messages, but the number was not manned, and no one phoned me back. I did some research: it was the right number, but the department chronically understaffed. The letter said that I must phone within 7 days, and this time had almost run out: did that mean I might lose my place?
It was all quite stressful, and in the middle of it, Julie had a crisis, ended up in hospital again with an overdose, and for a couple of days I didn’t have time to keep chasing.
Finally, remembering that my company pays for private healthcare (of which I disapprove), I checked that I would be covered, and contacted the surgeon’s private secretary. Success! She picked up the phone immediately and within 10 minutes I had arranged to meet the surgeon in his private clinic in 2 weeks time. I sat back on my heels, astonished. Eat dust NHS.
But it was only when she phoned back later to check some detail, that I realised I had misunderstood. The appointment was not to meet the surgeon, but for the operation itself.
I was aghast! Now things are moving too quickly! I don’t feel ready to go under the knife so soon. And it feels positively indecent to have this surgeon cut into me without so much as meeting me first. By the time he sees me for the first time I will be unconscious. All the energy I had expended fretting about the wait now went into anxiety about the undue speed!
Of course I will go ahead in two weeks if I can: it is too convenient not to. Getting it out of the way will improve the outcome medically, get it finished before the children’s exams, let me recover in time for my holiday, and many many other benefits. I will just have to learn to live with my abandoned principles and my squeamishness.
However there is one sting in the tail: the operation can only proceed in two weeks if my notes are promptly passed from the NHS to the private hospital. And of course that means relying on the department secretaries who are too overworked to even pick up the phone :-(
As soon as it became British law that you could ask for flexible working, I was beating on my boss’ door asking to change my hours. My children were in primary school, and though I had more or less managed to cobble together solutions until then, finding childcare was a huge ongoing problem, especially during the holidays. We had been forced to move out of the city by the cost of housing, and though we loved (and still love) living in the countryside, rural areas provide far fewer options when it comes to childcare.
I knew it was a luxury to be able to negotiate my hours down, but it has never been really satisfactory for me: it has always been a pragmatic solution, not one I liked. Over the years I tried out all sorts of combinations, but in the end I settled down with a shorter working day, and term-time working. It was never a good fit for my workload, but gradually I became used to this rhythm of six or seven intensive weeks of work, followed by a week or two off.
It was only meant to be a short term fix for the few years until the children were old enough to be left at home on their own. How I would have laughed if someone had said I would still be working short hours when my eldest was eighteen! But then Julie got sick, I ended up clinging on to my job by my fingernails, and for a long time I was struggling to do the reduced hours I had, let alone increase them.
But suddenly things have changed. “Why are you taking the Easter holidays off work?” asks Duncan. “So I can look after you guys as usual.” I say, surprised. He pulls an incredulous face. “But we don’t need looking after.” And suddenly I realise it is almost true. Finally, I can say, after eighteen long years, that they are both just about able to cope alone. I’m sure I can be useful – making sure they eat properly and take a break from revising for their exams – but my presence is no longer essential.
Julie has just come back from spending a weekend on her own: an amazing feat (for her). I have written a bit more about that and how it feels over on my JuliesMum blog. She does still need me, but I no longer have to look forward in dread to exhausting days protecting her from herself, and trying to occupy her. She is – I hardly dare say it aloud – slowly getting better. Duncan, too, is gradually throwing off his depression, bouncing back, spikily shrugging off his mum’s attempts to cosset him.
Meanwhile, Julie is trying to decide about life after sixth form. I discuss on my Juliesmum blog how I feel about this.
The situation is this: I am not terribly ill, but I am in some pain and discomfort, and feeling very sorry for myself. I wait impatiently for the date of my operation to be set, with a growing list of things that have to be put off or put on hold until I know. Can I finish planning the summer holiday? Can I promise to take Julie to a university open day? Can I commit to visiting my father?
In the meantime, my energy is in increasingly short supply, and must be meted out carefully. Did I really bake bread once? I cannot imagine kneading bread dough at the moment! The house has to run itself as much as it can. I have two firm sources of support: principally Joe, who runs all sorts of errands for me, often when he is exhausted himself, and who is the proverbial pillar of strength. My other ally is the Internet: now I not only order food, but whole dinners. If you live in England, I can thorough recommend family meals from Cook, which are delivered frozen and can be heated up in the time it takes a teenager to ask (sulkily) “what’s for dinner?”
Two things that I find the energy for because they are life-affirming. My office now looks over the botanic gardens, and I walk there every lunchtime, come rain or shine, absorbing the colours, the blossom, the textures, the smells. The other is music. I have signed up for a short online course to learn about Beethoven (from Coursera) and wherever I have ten minutes alone I listen to a movement from one of the piano sonatas: really listen, not have it on as background music. Both of these are luxuries I could not even dream of last year when Julie was so unwell and so dependent that I had no lunchtimes, nor ever ten minutes alone. How I relish this now!
So I went to the clinic as planned and had a conversation about the biopsy results on my thyroid gland. Waiting for that conversation was by far the scariest part of the process: far worse than the conversation itself! I was spooked by the word cancer. And it really bugged me that they knew the results but wouldn’t post them to me or tell me over the phone: I felt at a disadvantage walking into that room, as the only person who didn’t yet know the test results. I wanted all the information as soon as it was available, not filtered and interpreted.
But the conversation itself was very straightforward and satisfactory. Nobody knows if I have cancer: the test didn’t give a simple yes or no. My thyroid is Schrodingers Cat: without further tests, I both do and don’t have cancer. The only way of finding out is to open the box: go ahead with the operation and remove part of the thyroid. (Which is exactly what I want to do anyway because it is so painful and uncomfortable.). The conversation passed the test: something will be done, I will probably feel better as a result, and I will not be left in limbo. As to the possibilities of cancer – openly discussed – I was given good answers to all my questions. The fear receded, the bogey man exposed in this case as a relatively weak opponent, known, named and oft defeated by medical science. If he is present at all, of course. (Such a weak opponent, in fact, that I will have to wait some months for the operation – which is a kind of reassurance, even though it is so hard to wait.)
This was the first of many conversations I must now have: with my husband, friends, colleagues, children, each of which will need their own version of the story. The conversation with Julie was one I particularly feared, knowing how raw she is after her illness, how easily something like this could feed into deep fears of abandonment. I felt that all this talk about cancer was unnecessary: if this word had spooked me, how much more it would spook her! So I left it firmly outside the door of the conversation: just said that I needed an operation to relieve my obvious pain and discomfort. Perfectly true, and probably the whole truth. But even the mere thought of me going into hospital did trouble her, and I had to agree to her telling her support team so that she can have extra support. Nothing can ever be private.
Still waiting for the results of my thyroid biopsy: I’m in a state of limbo. When the long awaited letter finally arrived, it gave no results, just invited me back to talk about them. This last week waiting for that return visit to the clinic is proving the hardest wait of all. I am very impatient. Everything is on hold: social engagements, holiday plans, work commitments.
It could still be positive or negative. The one good thing about a positive would be that it makes a better storyline. If you can say you have cancer, at least people will believe you when you say you feel pain. If it’s negative and there’s still no name for your pain, people don’t always believe you. We’re very simple animals at heart: we still like to see physical evidence, glowing brightly on a screen, or a number on a chart.
If you’re mentally ill, you don’t usually have the benefit of physical evidence. People don’t necessarily believe that you’re suffering: you may have to go to extreme lengths to persuade them that your illness is real.
Perhaps this is why some people place such emphasis on the cause of mental illness. It’s not that uncommon to find books or websites that assert that all mental illness is caused by trauma, often child abuse. Perhaps they don’t think the illness is real unless it can be traced back to some real external event.