Thursday, 30 June 2011

Deep recesses

I'm sure some of you reading this will have thought to yourself: "what would my mental state be if I was presented with that diagnosis?" Indeed some of you reading this know exactly what your mental state would be, because unhappily you've been there with me or you're still in treatment and know exactly how it feels. One of the things that unnerved me slightly when I got the diagnosis was the same thought. Would I retain my sanity?

Back in the late 70s I had acute clinical depression, just 18 months after our first daughter was born. It lasted in its acute state about 18 months and I had only just ceased to take anti-depressants when I discovered I was pregnant again. I suppose it was about 10 years before I really got back to normal. The depression took the form of OCD and also some agrophobia. I know, you can't imagine me in a situation where I was frightened to leave the house lest someone might talk to me.

Would that awful bottom-of-the-mixing-bowl dark hole be once again the sum of my waking hours? Well obviously not because I've been psychologically fine through all this. In fact if anything I've been happier since I started feeling better than I have for years. But there are times when my brain presents me with less-than-satisfactory thoughts. It's normally just before I get up - somewhere between that "goodness it's 5am and so light already, but far too early to get up" moment and the "crikey is that the time? - I'd better get up" moment. These waking dreams are confused and usually provide an insoluable dilemma. Don't ask me to recount any of them because they're so odd that they flit from my mind the moment I fire up the electric toothbrush.

But the point about them is that as I come too and realise that they're not real, I am filled with a wonderful sense of relief and relaxation - joy I suppose. I don't wake with a jolt to find out I've got lung cancer - quite the opposite. I wake from the mayhem to be glad to find out who and what I am.

This is the complete opposite of how it was back in the 70s when I would sleep in order to gain relief from what was going on inside my head. Once hubby was home and my childcare responsibilities could be handed to him, I used to place myself in a strange sort of half-wake-half-sleep state in order to give my poor tortured brain a chance to rest. (Yes, my brother can do it too!) Waking from that I'd find a world of misery. It's the complete opposite of how things are now. But the bizarre thing is that back then I really didn't have anything to worry about, life should have been brilliantly happy - while now, when I do have something that I could worry about, I don't.

Wednesday, 29 June 2011

Made my day

My visit to the dental hygienist was postponed because it would have fallen in the middle of the chemo cycles. This far on I felt I was sufficiently recovered to see her again, as I did today. She's lovely, with a wonderful smile (well you would expect that wouldn't you) and she made me feel as if she really knew me, although we'd only ever met once before as we've changed dental practice.

For safety's sake I explained about my condition and the chemo and my vow that, if spared, I'd be spending a vast amount of money on a crown and some tooth whitening. You see I did promise when I last saw the dentist that I'd let him replace my missing crown - and it does look increasingly as if he'll be getting the job.

Anyway, upon leaving, the charming dental hygienist's nurse - who had been in prime position not only to see my stained and worn teeth close-up but also my ageing complexion, my scraggy neck and chicken wing arms - volunteered: "I can't get over the fact you've over 60 - you look like someone in the forties." Well I came very close to hugging her as that just made my day.

Tuesday, 28 June 2011

Dead toes

One of the side-effects of my chemo is damage to the nerves in my extremities - toes (and also now it seems soles of the feet) and fingers. It's not painful, it's not debilitating, it's just annoying. So today I got onto the internet to find out what I could do about it. As ever, I'm confused by who is in charge of my care just at this precise moment - when I'm in limbo suspended between the consultant oncologist and the surgeon. The solution is therefore to take charge myself.

I've been taking bionutrients for my gut and a supplement for my liver plus in recent days a high dose of vitamin C in preparation for surgery. But what about these fingers and toes. A quick trawl of the usual advice sites just says it might happen and that it might get better. A bit more in depth study of some US cancer-survivor chat rooms shows that (as I rather suspect it's doing) it's possible it gets even worse before it gets better (if it does). And the cause? Well something to do with B vitamins.

Now that's interesting. I can't remember if I told you that I was slightly concerned that due to the delay in my last chemo treatment I queried if I should be given another vitamin B12 injection. I asked about this several times and was assured that it wasn't necessary. I wonder if I'd be in this stage now if I'd been given another. Their argument against lacked any logic at the time, and still does.

Anyway, no use crying over spilt milk. Today I've started to take a vitamin B complex - much like the one that I started to take many years ago when I suffered very briefly from carpal tunnel syndrome. Vitamin B certainly sorted that out and perhaps that's my problem. We'll wait and see.

Blowing bubbles

We went to a wedding celebration a week ago - a wonderfully informal occasion held in a large garden with parking in the adjacent field. Two large tipis had been erected. They'd thought of everything; there were toys for children - several of us tried (unsuccessfully) hula hooping! And there was a bubble machine.

It's something I've always wanted so last week I ordered a small bubble machine. It arrived very quickly and I took it to the wood. The bubbles were quite amazing. I just couldn't quite get over how some were shades of gold and others were an amazing turquoise with pink edges. Is it the amount of liquid in each bubble that determines its colour or is it the size? Whatever, it was a very small investment for a great deal of pleasure.

Sunday, 26 June 2011


'Tis hot but we're home after a lovely weekend in the woods with friends. Amongst trees was definitely the best place to be today. Now having supper in the garden as the sun finally sinks below the horizon and temperatures return to acceptable levels.

Thursday, 23 June 2011

To the woods

Off to the woods today for a few days, camping and cooking lots of sausages. The only difficulty in woodland dwelling is drinking water. Yesterday I invested in a water filter system so I've bottled what I hope is enough filtered water to last me the weekend. I've become increasingly concerned about the effect of chlorine. Apparently the thyroid gland doesn't like it - it doesn't much like fluoride either. When I hear the fluoride and teeth debate I do wonder if thyroid defficiency, of which there seems to be a great amount, might be due to fluoride in drinking water and toothpaste. I wonder if anyone has done research into that.

I'll be attempting not to inhale too much woodsmoke - which is quite difficult - but there's something very comforting about woodsmoke. I guess it's probably one of the most common smells that mankind has encountered over our evolution.

Wednesday, 22 June 2011

New and not so new

Yesterday was a bumper day for the local hospice - I spent a total of £16. I visited one of their shops in the morning where I found a nice silk blouse which I thought one of my daughters might like and a blouse for myself. In the afternoon I attended a hospice fashion show where a relative was modelling some of the hospice's clothes. I picked up an outfit which I think would be ideal for a wedding, plus a pair of white jeans which will go with the not-completely-white-but-a-little-on-the-cream-side jacket. That means that I can sell my so-white-they're-blue pair on ebay.

I've stopped taking clothes to the local hospice shop because of the way they sort and manage their business. It's interesting to note that they do sometimes run out of clothes and have to make appeals for more and I do wonder if this is because they are just too picky. You can no longer go in their shops and pick out something that looks as if it's been worn. No, they strive for everything to look completely new and appear to be trying to compete with other clothes retailers in terms of quality.

The hospice is not alone. Other charity shops are following the same line now I find. Of course what doesn't get put on the rails goes to a rag merchant and when challenged the charity will point out how much it gets for rag per bag. I just think it's a terrible shame that my garments which I have not been outworn but just out-shrunk have to end up as rag when they could very well be worn for years to come by someone else.

So if I have an item of clothing that I want to donate but which, though not worn out, shows some signs of having been worn, I take it to the nearest animal charity shop. I've found these are far less picky - and consequently you can get better bargains there too. There's something about animal charity shops which is different. They are usually smellier - I guess because there's more worn clothing on the rails - and they are usually cheaper. But if you can wade through the other characteristic which is simply too many clothes on too few rails, you can sometimes find the most amazing bargains, like my leather coat the other week.

We're going to have to start wearing clothes until they fall to bits - we can't carry on with this Primark-led 'wear today, bin tomorrow' lifestyle. It's unsustainable. So perhaps charity shops will eventually all have bargain rails with the lesser-quality-than-we-would-wish items for a pound or so. I hope so.

Monday, 20 June 2011


Over the past few days I've been thinking hard about how the NHS has managed my case and how that might have been improved. Obviously I'm elated at the prospect of having surgical removal of the offending tissue. I was told right at the start, the first time I saw the oncologist, that surgery wasn't an option. So I never had any hope that it would be. I know full well that if you're going to beat this particular type of cancer, the best solution is the cut out the nasty bits. In fact my hubby asked about halfway through my chemo routine - whether surgery was possible. He was told again that it wasn’t.

The consultant had given me a figure for the rather short average life span for someone with my diagnosis. It was a little scary - no, that’s not the right word, because I’m not scared of dying. But it did shock me severely, because despite my pragmatism there’s something primaeval that engages when your life is threatened. You can’t help it. In fairness, he also told me that despite that average there were people who went on for several years. What he didn’t do was explain how it happened that they beat the average. And he didn’t hold out hope for surgery - in fact he positively denied its possibility.

Now I'm not advocating that the medical profession should tell lies, far from it. But I do wonder if they are shooting themselves in their feet by not sweetening bad news with more of a dose of extreme hope. So for instance, in my case: "this is the average life expectancy of someone in your state but if we can get the cancer to reduce substantially using chemotherapy, then you might be suitable for surgery".

The placebo effect has been proven to work - so why not in this situation? Surely a patient with some hope that they might eventually reach old age is going to respond far better to one with no hope. I am repeatedly told by those who know far more about cancer than I do that one's mental state is very important, if not the most important aspect in fighting this disorder. (I call it disorder because that's exactly what it is - cells' repair mechanism gone awry.) So why not use that placebo and talk up the possibilities of survival against the odds?

I’d also suggest that as well as drawing on the placebo effect, this new sunnyside culture could engage in the holistic treatment of patients too. So I don’t just mean offering - as some cancer treatment wards do - alternative therapies on the side but including those in the patients’ prescriptions along with dietary and spiritual advice.

There’s been quite a debate about doctors discussing religion with their patients recently. I really can’t see what is the problem with a GP - or any other medical professional for that matter - enquiring of a patient if they have any spiritual requirements. In fact, if it is not the GP who can diagnose an infliction brought about by a troubled soul, who is it? OK - blatant evangelising isn’t something I’d want on the NHS, whatever the creed or religion. But surely we should be dealing with the whole person and that might include their spirituality or lack of it. I’ve taken an holistic approach to my illness and I’ll testify that it works. If it works and the patient feels better and the ultimate outcome is better, then it cannot possibly be wrong.

We need a real Health Service revolution (forgive me if I’m repeating myself here - I seem to remember a similar tirade months back), not just a shuffling of papers. It needs a complete culture change whereby everyone looks on the bright side - staff and patients alike. We need to be treating the patient holistically and with the utmost optimism at all times. It’s that simple.

Saturday, 18 June 2011

A consultation date

I now have a date for my consultation with the surgeon - 7th July. Hopefully the system will be able to schedule me for surgery soon after that. While I'd be quite happy to get on with it now, it does give me plenty more time to prepare my body so it's in the best possible order for the event.

Previously I've had a horrible feeling in my stomach when these hospital letters arrive. But two came together yesterday. I opened the one from the oncologist who always reports to my GP and the chest physician after he's seen me. Once again they've got my thyroid state written down wrongly. I'm hypothyroid - meaning that my thyroid gland doesn't work as well as it should whereas the letter says I'm hyperthyroid which is the opposite. Last time I phoned the oncologist's secretary to get it put right but I won't bother this time because the content of the letter makes it quite plain that there's an error transcription. He records correspondence on tape for his secretary.

It does make you think though - it could be quite a serious matter in certain circumstances. Maybe - as the two words are so similar this can't be the first time someone's got it wrong - the medical profession should find another description for one of these afflictions.

Having a date has made a great deal of difference; I felt incredibly happy when I woke up this morning - a bit "hyper" you might say! I'll be able to enjoy the next couple of weekends which are planned to be quite special and I should be able to make it to the local folk festival. There might be thunderstorms and heavy rain in reality here but there are no clouds on my personal horizon.

Friday, 17 June 2011

All hunky dory

My grieving PC has now had its attention directed to the correct location and all my files are back in the right place - including those tricky PST ones. All's well. As if that wasn't enough delight for one day, I picked up a lovely Per Una beige linen skirt in Age UK for a song.

Thursday, 16 June 2011

The power of friends

The more I think about it, the more I believe that the positives vibes, the prayers and the well-wishing from you all have played an enormous part in my recovery so far. Let's face it, you, my enormous support group, have been telling me I'd beat this thing right from the start. It was only me that doubted it. So if it can't be down to my positive thinking, then I guess it's down to you guys. For that I'm incredibly grateful - thanks just isn't adequate enough a word.

There are other reasons to be thankful for such good friends and family and one of them was the action of the Angel of Mercy who received my email about the dead PC while dining out last night. Together with his lovely bride-to-be he beat a path to my little office and sorted out the directional shortcomings of this machine. Today, with the help of the very sexy-sounding online backup support worker, I successfully retrieved all my files. Now there's just one little niggling PST file problem to be sorted and I'm flying again - technologically speaking.

Still no call or letter from the surgeon yet - but then I expected it to take a few days. Oh, and Franc the Van is now polished (all except for his rather high roof) and is doing a great job of repelling today's showers. He passed his MOT this morning with flying colours I'm glad to say.

P.S. Forgot to tell you that yesterday I bought a lovely beige jacket in a charity shop. I'm a bit addicted to buying jackets - that's the sixth since I've replaced the contents of my wardrobe. Enough I think.

Settling down

It's over 24 hours now since I got the news that surgery was an option. It still hasn't completely sunk in yet. I've spent the past six months coming to terms with living with cancer. A certain amount of re-adjustment is now necessary. For instance, I'd assumed my car would, in all likelihood, outlive me. Now I need to be considering whether it's time I changed it. I've been decorating so that my hubby would have a presentable dwelling in the event of my demise. There are all sorts of things for which I'd made plans and of course some for which I thought no plan would be necessary. In fact, in order to be quite sure I'd understood him correctly I asked the consultant yesterday: "So what you're telling me is: I might need a Zimmer frame?"

Don't get me wrong. I'm not complaining. I embrace with enthusiasm the fact that a surgeon is going to carve me up. I'm positively looking forward to it. What is tough though is the waiting. That's been the case all the way through. At each stage when I've been told what the next action is to be I've had waits of days and often weeks before anything happens during which time there's loads of additional adrenalin pumping around me quite unnecessarily.

I've looked it up on the net and, depending upon how much is removed, I'm looking at between 5 and 10 days in hospital and then 4-6 weeks recouperating before I can drive again and start to lead a normal life. That's pretty quick I reckon. Anyway, "when?" is the question everyone's been asking me and at the moment I don't know. But rest assured I'll post here as soon as I do.

Tuesday, 14 June 2011

Wow! Didn't expect that

I've just come back from an appointment with the consultant oncologist. The results of my scan are so good that they are going to carry out surgery to remove at least one lung lobe and the offending lymph glands - aiming for a complete cure.

I never expected that - I'm just overwhelmed by it and actually need to sit down and have a good cry to get over the news. The hours leading up to this have not been easy for me - I don't know why. It seemed worse than all the other appointments and I've been down - yes, I admit it - bloody down and irritable. Poor old hubby has had to cope with some pretty awful behaviour.

The details are that the thyroid still glowed at the PET scan but they're not concerned about it as it remains the same size. An irritable bowel - which I knew was going to be an issue - glowed on the scan so I might find myself subject to a colonoscopy. I knew it might be a problem as the chemo upsets my digestive system and I'd had a bad bout a couple of days prior to the scan. The chances of my bowel glowing were very high. The patch on my hip which the junior oncologist picked up from the CAT scan is of no consequence - it obviously didn't glow this time. So it's just the lung tissue and lymph glands that need sorting.

No, I don't know when I'll go for surgery - my guess is within the next couple of weeks or so. I'll need 4-6 weeks recovery and then may face some radiotherapy - it all depends upon whether or not it's deemed necessary. So there you have it folks. It's all looking far better than I ever could have hoped with instead of keeping the nasties at bay the possibility of losing them altogether. Fingers crossed, eh?

Monday, 13 June 2011

Home sweet home

We arrived back just in time to catch the last number at a local music event which is held in the town where our three daughters live. That was a after a very unpleasant drive home - well the last bit was unpleasant. The first stretch involved a wonderful cross country route through the Cheviots with the sun out and views for literally tens of miles from one vantage point. It was only when we reached the motorway that rain fell and with it that awful spray which makes driving very tiring.

However here we are and all is well. Well, I must qualify that. I'm like a bear with a sore head when technology fails - and fail it has today. Last night I took the trouble of doing some updates which had become due while we were away. I guess these proved just a little too much for the struggling PC which has been acting as a file-server for the business for the past six years or so. Today it refuses to spring into action.

Now I have a remote back-up and anyway so most of the stuff on that machine is so old that I doubt I'll ever look at it again. My freelancer in any case has a copy of all the clients' data at the point I handed it all over to him at the end of the year. So I know I have the data I need - both on the hard disk of the deceased PC and also at the remote backup point. What I don't have is the technical ability to overcome the fact that my PC goes to look for the one that's died each time. It's quite sweet really - is it grieving I wonder? Luckily there's a computer professional in our road upon whose services I am about to call.

Thursday, 9 June 2011

Gone today, hair tomorrow

The water here is so wonderfully soft that the shower cubicle glass dries to sparkling with no water marks. It's very tempting to keep washing my hair as it really shines and looks far more plentiful when it's just washed.

What's really encouraging is that the hairbrush for the last few days has reaped only that amount of hair I would normally expect to have found in it pre-chemo. So from now on I've every expectation of it thickening up again. If the new growth is - as the little bits of grey round my ears tend to be -silver and curly, one can only guess at the resultant style!

Tuesday, 7 June 2011

A fishy tale

There are some amazingly beautiful sights up here in the highlands and yesterday we travelled through passes and around lochs with calendar-quality views. Foyers waterfall was incredibly spectacular.

This morning we examined Fort Augustus in more detail and took a trip half-way up Loch Ness in a boat with sonar imaging. No monsters were apparent but the informative commentary was fascinating. I've been craving fresh fish for some days now and today I was not disappointed by the local pub's fish and chips - incredibly fresh haddock was yummy.

Scottish mists now cover the hills and our lazy day is such that we're all practically horizontal - well that's what holidays are all about eh?

Sunday, 5 June 2011

And when my fevered lips were parched ....

.. on Affric's verdant shores (apologies to the Coppers and Rose of Allendale this time) ... we had a cup of tea and toasted teacakes (thanks Franc the Van). Yes, Glen Affric did not disappoint - what a wonderful tranquil place where, if you stand still, you hear nothing but the sound of water and song birds. It's been so long since my ears were relieved of the background drone of aircraft and motor traffic I'd almost forgotten what silence sounds like.

Lots of motorhomes around. It looks like the locals don't like them. On the journey here yesterday two cars pulled out in front of us - from side roads onto the main road - causing hubby to brake sharply. The first was an Audi which failed to accelerate to any acceptable degree. The other one actually pulled out and then braked, for absolutely no reason. We feel we are probably being persecuted from having the temerity to drive a motorhome.

No monsters yet - but we'll keep looking.

Saturday, 4 June 2011

Oh, the light nights are long*

Never having been to Scotland at this time of year before I was astounded to see it still light at 10 pm. We were given a very comfy bed so didn't sleep in Franc last night. We're right by the old harbour but the sea, except for its relentless to-ing and fro-ing, is as calm as a millpond.

*apologies to Karine Polwart

Wednesday, 1 June 2011

Going up north

I'm just going to give you a quick update on where I am in the NHS scheme of things. Having completed the 6th and final dose of chemo four weeks ago, I undergo a PET scan - where they make me radioactive - on Friday followed by an appointment for the results on 14th of June. At that point I will find out what next is planned for me.

In the meantime my hubby and I with Franc the Van are heading north, first to Dunbar to spend the night beside the sea with a very good friend of ours and thence onwards to beautiful Loch Ness. William Topaz McGonagall the poet acclaimed for his appalling verse wrote of it in glowing terms. For those who don't know his work I've reproduced it here - below - so that you too can appreciate his skills.

So dear readers, whereas my recent postings have been sporadic, it is possible that they may cease altogether for a few days. It just depends upon 3G and how much of it there is in the far north. Don't worry about me if you don't hear from me for a while, and in the meantime enjoy Mr McGonagall's verse.

Beautiful Loch Ness,
The truth to express,
Your landscapes are lovely and gay,
Along each side of your waters, to Fort Augustus all the way,
Your scenery is romantic...
With rocks and hills gigantic...
Enough to make one frantic,
As they view thy beautiful heathery hills,
And their clear crystal rills,
And the beautiful woodlands so green,
On a fine summer day...
From Inverness all the way...
Where the deer and the doe together doth play;
And the beautiful Falls of Foyers with its crystal spray,
As clear as the day,
Enchanting and gay,
To the traveller as he gazes thereon,
That he feels amazed with delight,
To see the water falling from such a height,
That his heed feels giddy with the scene,
As he views the Falls of Foyers and the woodlands so green,
That he exclaims in an ecstasy of delight -
Oh, beautiful Loch Ness!
I must sincerely confess,
That you are the most beautiful to behold,
With your lovely landscapes and water so cold.
And as he turns from the scene, he says with a sigh-
Oh, beautiful Loch Ness! I must bid you good-bye.