Monday 28 February 2011

Here I go again

Blood test today, consultant tomorrow, chemo on Wednesday. I arranged with the GP - when I rang about the CT scan - that I would also have an early thyroid function test. I was a bit concerned that, having lost 2.5 stone over the last three months, the amount of artificial thyroxine that I take could now be excessive. I wasn't due my regular test for another month. So today the very nice phlebotomist (yes, that's what you call those who draw blood) had to fill four separate containers to satisfy all those who wish to analyse mine.

This is another example of how the system treats one bit and disregards the rest, leaving me to use my own intelligence and knowledge to flag up possible issues. I may or may not have thyroid cancer so you'd think that there would be some interest in the function of my thyroid from the oncologist. But no, so far there is no indication that he's very interested in it. It seems that is still down to the GP. However tomorrow is another oncologist consultation and it's on my agenda to quiz him about it.

Sunday 27 February 2011

Treading purple

I made a little foray into a couple of charity shops yesterday and was rewarded by an enormous bath towel at only £2. In the next shop I found (mock) suede shoes in purple and in a very fashionable style. Seeing them was to fall in love with them even though they were a size larger than I normally wear. I bought them without trying them on secure in the knowledge that if they didn't fit there will be a gentleman of the cross-dressing persuasion somewhere who will be delighted to take them off my hands via ebay at more than I paid for them.

The best bit is that with an insole in place they fit precisely and what's more they're even comfortable.

Saturday 26 February 2011

Going forward

It really is lovely to be back, especially back in our own bed. A cheap sprung mattress doesn't have anything like the comfort factor of ours which is memory foam topped.

While it's great to be home I am conscious that the days are now ticking towards the next dose. Being ill when you don't expect to be is one thing; it's entirely another to know that you're going to be rendered unwell and to go willing to receive the poisons that will make you so. In fact, it's a strange but true fact that it's this dark chemo cloud which bugs me, not the knowledge that I have cancer. I seem to have got so used to that now that it's rarely at the forefront of my mind.

One thing I did before we went away - which I suppose emphasises how I'm now looking forward with confidence - was to order new business cards. They were supposed to take several weeks to arrive and I desisted from paying the additional fee for rapid dispatch. I'm glad I did for they were waiting for me when we got home.

So if you know of anyone who wants a bit of copywriting done, or some help with public relations or marketing, let me know. I'm taking on one-offs from now on. There's less stress that way and I can always decline work and go swanning off on another holiday instead if I want.

Friday 25 February 2011

Home sweet home

It's lovely to be back but it was great to be away. Everything is now unpacked and I have a weekend stretching ahead of me with very little scheduled.

Climbing several flights of steps one after the other, up from the prom at Cromer yesterday, made me realise that I probably need to concentrate a bit more on upping my iron levels. It was difficult to fine tune my diet over the week away and I cheated several times on my normally strict regime. So it'll be liver tonight and a good deal of spinach before Monday. That's when I have blood tests done again.

Wednesday 23 February 2011

Our Lady of Walsingham

I've always wanted to go back to Walsingham and see what it was like. I have vague memories of staying there with my parents, brother and a friend of mine who was brought along with me to stop me being bored; it was 1963 if I remember correctly.

Today we returned. It's a strange place, full of graven images and gift shops, yet it has an strong medieval charm. The actual shrine had the same effect on me as it did way back then - I wasn't impressed. The grandiose decorations of Roman catholicism are not to my liking - it's all very high church even though the site of the shrine is Anglican. I could have drunk the water from the well but I concluded it would have had very little benefit given my lack of faith.

Henry VIII brought Walsingham's economics of pilgrimage to a suddent stop and so it remained for 300 years until the practice was revived. Of course pilgrim destinations attract a whole host of money-making enterprises much as they were in medieval times. Nothing ever really changes.

Tuesday 22 February 2011

The morning after

For someone who no longer drinks alcohol it's difficult to understand how I came to feel slightly overhung this morning. No doubt it's the result of so much dietary cheating yesterday. Too much salt and sugar plus that coffee and the odd processed food ingredient is probably the reason. It just goes to show how finely balanced a human body. Resolution: be really really good from now on.

It is currently snowing - 10.10 22.02.11 - large big globs of snow which have little chance of settling thank goodness. I've had enough of winter this year; I'm extremely keen to greet the spring.

Today we have a birthday amongst us and Star Wars is the theme for the celebratory tea party. I've prepared Jedi costumes and even made light sabres in the hope of impressing our grandchildren.

Monday 21 February 2011

Steam dream

The Poppy Line - North Norfolk's steam enthusiasts' railway - greeted us today. We timed our trip to coincide with a steam engine; diesel wouldn't do. (Did you know that in 1886 Herbert Akroyd Stuart invented an oil engine at Bletchley which was the forerunner of the modern diesel engine?) We travelled down in a standard carriage and back in first class (no difference in price though).

The lovely little cafe on the prom - The Funky Mackerel - seemed a good venue for lunch and despite their wholesome food I discovered for the first time how difficult it is to follow my dietary regime when eat out. I've cheated a bit this week; a little helping of pudding last night, a pancake this morning, coffee at elevensies and some ciabatta for lunch. No matter, it was only a little and in any case, we're on us 'olidays!

Sunday 20 February 2011

Sea spray

Felt and tasted the salt on the breeze as we walked along a prom, prom, prom, tiddly om pom pm this morning and then had green tea in a lovely little cafe overlooking the shore. Pot painting this afternoon. I chose a small jug to decorate in green leaves and purple flowers - yup there's the purple again. Our efforts at decoration will be fired in the next couple of days so we can pick them up before we leave. I'm feeling incredibly well. Two of our party have developed sore throats and colds, one of them being my hubby, but I'm exhibiting my customary resilience to such maladies.

Saturday 19 February 2011

Normality

Despite this wet cold Norfolk weather we ventured into the local town today and I got back into to my charity shopping habit. It's wonderful to be normal again. My low immune phase is now a few days behind me and so I'm not paranoid about picking up coughs and colds any more. It's Italian night tonight, that's the theme. We're dressing for the Rome catwalk, from the ceasars to modern day - so it's on with the classy dress, red lipstick and nails.

Thursday 17 February 2011

We're all going on a .... holiday

Getting quite excited now as it's been months since I've been away - six months in fact. Tomorrow we're off to a converted barn that's big enough to accommodate our family and some friends. I've negotiated a week's delay before my next chemo - they said it would make very little difference. I gather from my research that my cancer is a slow-growing type though I doubt it's got much chance of growing given what they've thrown at it.

I'm taking a laptop so I expect I will update this blog - but if I don't, don't worry about me. I'll be striding along the beach feeling the wind in my hair or riding on a steam train.

Wednesday 16 February 2011

Ear, ear

There is very little distinguish between my current state of health and a time when I was perfectly well - other than overall I'm probably in better shape as I carry less weight and am exercising more. However my taste is slightly strange and today I examined my tongue, which is something I haven't done previously. It looks a little bit coated at the back which no doubt accounts for the compromised taste. Whether this is a result of the chemo or whether I really have been fighting off some nasty virual or bacterial infection, who knows. I must remember to obvserve my tongue a few times during the next chemo session.

I completed 10 minutes on the rowing machine today with ease. Using imaging techniques from yesterday's therapy session I concentrated on my right lung and imagined I was exhaling the unwanted material, blowing it out of my body.

The hair loss has diminished now but I expect I'll have another bout of that soon - apparently it happens about three or four weeks after the chemo which means I haven't had the hair loss yet from the last lot. I am aware of my left ear a little more than normal - it keeps poking out from behind my length tresses in a way it has never previously been able to do. The right ear doesn't appear to be similarly liberated so whether I have more hair on the right or whether my left ear sticks out more I'm not entirely sure. It is maybe a combination of both. Anyway no-one apart from me notices the thinning so the purple hair will have to wait awhile.

Tuesday 15 February 2011

The Journey

Well, what an exciting day I've had. It started this morning when I detected I wasn't quite as well as I had been yesterday. I couldn't put my finger on it but something was niggling - stomach, head? I suddenly felt distinctly hot as if I had a temperature. Temperatures are something you're warned about and especially to be feared particularly at this stage when my body's immunity is rather low. I grabbed the thermometer - we only have one in old money - and it showed 98.8. Just a slight rise.

My first instinct was to cancel the appointment I'd set up for the afternoon with a practitioner in Journey therapy. This is rapid therapy, used for general healing and well-being purposes and designed by one Brandon Bays. Look her up if you're curious. I'd decided to undertake a session as part of my clear-out of rubbish strategy. I've done the clothes, I've done the office, I've done the personal papers - now it's time to deal with the psychological baggage.

Instead of acting precipitously I resolved to wait an hour and take my temperature again. When I did it was less than normal and I felt a great deal better. So off to the therapist I went for a session which lasted over thee hours. Most of the time was devoted to visualisation of people, events and places. It ended with a friend, who I'd chosen in my mind's eye to be my mentor, painting unwelcome lung tissue with curry paste! Don't ask me why that idea came into my head, but it did.

I'm feeling fine now, despite the mental athletics. The big question is: was my rapid descent and recovery this morning an example of how the mind can affect the body? Was it a physical manifestation of a wish to avoid the session? Now that's an interesting question.

Monday 14 February 2011

Love, love, love

Here's wishing you all a very happy Valentine's day. May it be filled with love, joy and happiness just as you have flooded my life with your love and positive thoughts.

Sunday 13 February 2011

Nails

One of the things that I'd noticed when Googling chemotherapy was the occasional reference to trouble with finger nails. Well, I suppose it makes sense that might happen given that hair falls out. The bizarre thing which seems to be happening in my case is that my finger nails grow faster and stronger. Maybe it's the drugs, maybe it's the diet. Who knows?

P.S. I've just added an email signup facility to the right of this so if you want my blogs to end up in your inbox, just pop your email address in the box.

Saturday 12 February 2011

You wonderful people

There aren't a couple of days go by without one of you responding to my blog with a suggestion, some useful information, or perhaps an inspiring book or a supportive response. I can't thank you all enough for your wonderful help. Our house has is always awash with flowers too - you've been so kind. I'm really buoyed up by your support and the knowledge that you're all out there rooting for me. Thanks folks.

Friday 11 February 2011

Scan details

Several of you (especially the nurses) have asked what "good news" really means. Well the reason I didn't give more details in that scan post a few days ago is that I'd stupidly failed to ask for specific statistics on the lung area when the nurse rang. Of course, by the time I enquired again my file had been returned from whence it had come and she was unable to access the information.

But following a suggestion from a friend I called my GP - he's always happy to give me chapter and verse. He had access to the report and was able to tell me that the area of concern on my lung has shrunk - I calculate it (but maths was never my strong point) to 73% of the size it was. There's been a decline (presumably of unwelcome tissue) in the lymph node(s)(still not sure whether this is one or more)in my chest. There are no signs of anything untoward in my abdomen - that's liver, adrenal glands or kidneys - they're all clear. There's nothing new appearing on my lungs. Of course since then I've had another dose of treatment so I think we can safely assume that the current state of play is even better than it was at the time of the scan.

The big question about what's happening to my thyroid still remains unanswered because apparently the scan report didn't mention it (despite the radiographers being extremely careful to ensure they scanned that organ as they'd obviously received specific instructions).

I've been trying to write this post for a couple of days and have found it extremely difficult because when I try to explain it all precisely to you, I find I don't really understand it enough myself. So, Mr Oncologist, be prepared as our next session will probably last a lot longer than usual.

Thursday 10 February 2011

Ebay day

Spent the morning setting the camera timer and dashing across the room to assume a model-type pose so that I could photograph myself in my enormous but much-treasured tent-like garments. It's not the best way to present something you're wanting to sell, but it has better results that taking pictures of things on hangers.

I'll be sad to see them go but I'm so looking forward to having so much more to choose from when I get back to regular charity shopping, and it would be good if my previous purchases funded my new ones. If you haven't discovered the joy of clothes shopping in charity shops or just don't like the idea, do think again. Don't be put off by dry-clean labels. You can usually wash successfully the most delicate of wools if you do it by hand, just use warm water and avoid any sudden changes in water temperatures. Don't ring or twist the fabric; gently squeeze it. The only fabrics that I've had trouble with and have shrunk are the viscoses - not all of them, but some to shrink and when they shrink they really shrink.

That leads me neatly into the rest of yesterday's story of clothes re-found. In my larger form I came across two lovely M&S jackets in charity shops. One was purple and so gorgeous that I didn't follow my own advice above but committed it to the dry cleaners after purchase and before wearing. The other one, red but from the same range, had cost me less (we're talking around £3 here) so I thought "what the hell" and hand washed it with care. Imagine my horror when it ended up two sizes too small. But .... yes, you can hear the but coming .... I just couldn't face getting rid of it so I had it stored, along with an Indian-style viscose top which had suffered a similar fate. And the good news is that yesterday I discovered that both garments fitted me fine.

Wednesday 9 February 2011

Pure bliss

Now as those who know me well are already aware, I'm someone who likes to be in control. So I have always had in the back of my mind a whole set of positive outcomes which might be used to counter adversity. The sort of thing I'm thinking about is: if I found myself severely disabled, unable only to blink and thereby operate a computer then I might take on a mammoth task to pass the time. For instance I'd thought of arranging Hymns Ancient & Modern for three ladies voices instead of treble, alto, tenor and bass, since it's rare to find gentlemen in church choirs these days. Actually it's rare to find a church with any people in it - let alone a choir!

I'd thought about cancer; I'd even contemplated my hair falling out. My plan was to dye it bright purple while it was still in place, to be utterly outrageous if only for a few weeks. As it doesn't look likely I'm going to lose all my hair that plan has gone on the back burner. But I had another one for the same eventuality. If I had cancer I thought I would most likely lose masses of weight, in which case I could stop veiling myself in voluptuous garments. Well, that second one has come true. I didn't really admit to myself that I was well over 15 stone before which means that I've lost probably getting on for two-and-half stone now.

So today I delved into the deep recesses of my bottom drawer and into the black sack in the spare bedroom. And what did I find? I found loads of (predominantly charity shop sourced) garments which I dearly loved, which hadn't previously fitted me, many of which I'd never worn, but I just couldn't bring myself to throw away. I found some pure linen tops for the summer, some vests, some lovely blouses and I know that I'll be able to get into my rather smart satin trousers again now. You see behind every cloud there is the silver lining that I'd always suspected.

Tuesday 8 February 2011

Raise your glasses

The Macmillan nurse rang back yesterday afternoon to say that she now has the report on my CT scan and it's all good news. I'm not drinking at the moment but don't let that stop you. Cheers!

Monday 7 February 2011

Hair & reiki

My reiki practitioner is also a hairdresser, a psychology student and a seeker of truth about quantum phsyics, so it was an interesting morning. She chopped about four inches off my hair leaving it with a nice clean edge. I've lost getting on for half the density that I had. Hubby says he can't notice but I could see that the bottom ends were thin and messy so it seemed sensible to chop it. Then I had the reiki session which was wonderfully relaxing. I really do feel does me a lot of good. My energy levels are apparently high and today she concentrated on the psychological and emotional elements.

One of the difficulties I have is how I envisage my tumour. Yes, sorry, not a nice word but actually if you look it up it can just mean abnormal tissue and it was how it was referred to even before they knew it was cancer. (Sorry, another not nice word.) I have a problem thinking of it as something bad because that means that I strongly dislike something within me and I don't think that's a healthy position to take. So instead I've just avoided the issued and tried not to think about it at all.

Now my reiki practitioner has suggested that I envisage it as an area of difference which needs putting back to how it was. So rather as I might Photoshop a graphic image of an old photograph and restore individual pixels to their former glory, perhaps I could imagine I'm zapping the pixels of my tumour back to their former state. I haven't tried it yet, but I think it's the way to go.

Saturday 5 February 2011

Windy ol' stormy ol' weather

I can't quite understand why the weather forecasters haven't warned about these gusts; some of them are surely gale-force. It's been 48 hours now of squally wind and today a hanging basket bracket at the back of the house came partially detached; it must packing quite a punch. So glad we got the ridge of the roof done last year and the rotting weatherboard replaced, otherwise we'd be in trouble now.

I've been dozing through the day and the cat has dozed a similar amount. My problem is that if I sleep the day away I lie awake at night. The cat on the other hand doesn't seem to have that problem being able to sleep for England. But we have one thing in common - we both snore!

Friday 4 February 2011

Platinum hits home

It's the day I should be feeling a little under the weather and I am - just a bit. Cheeks slightly flushed and I can feel my body saying: "oh no, not this again!"

But it's a small price to pay for the benefit - I have no cough whatsoever now.

Thursday 3 February 2011

State of mind

When you're given the diagnosis of a life-shortening illness you are stunned - well we certainly were. I'd found the knowledge, about three years ago, that I would forever have to take a synthetic form of thyroxine bad enough - having cancer put that little hiccup into perspective. A few tears and then a firm resolve to get on with life, that seemed the best solution. Let's face it, we're all in terminal decline. It's a fact of life.

It wasn't depression but I did notice one psychological change during those first few weeks after the diagnosis. I found it difficult to hear or watch reports about famine or war, or to watch nasty violent thrillers with violence and murder at their centre. Instead I lived off a diet of Catherine Cookson dramas plus antique and house location programmes.

But somewhere along the line I've become normal again. I said to the girls when they were stunned at my news: you'll get used to it in time. And we all have. Certainly the flow of unremitting bad news stories served up by the news channels is no longer so objectionable.

Wednesday 2 February 2011

All done and dusted

The chemo session went well today - just a little delay as the pharmacy decided to work through the list of required drugs from the ward in reverse order from that in which it was presented. I escaped having to have a blood tranfusion. My haemaglobin was 9.8 and 10 is the benchmark. Had it been threatened I was going to argue my case. There is evidence in my family of someone operating normally while being in a state of such acute anaemia that the district nurse, when summoned, found it difficult to believe they were actually standing. So I suspect that my genetic norm is not quite the normal norm.

I have also negotiated an extra week between this dose and the next to accommodate the holiday we have planned, so I'll have an extra seven days to consume high-iron-bearing foods and I hope to get back over that 10 mark before they test my blood again.

Tuesday 1 February 2011

Burns had it right

"The best-laid schemes o' mice an' men gang aft agley" said the bard and he was certainly right about that. The appointment with the consultant turned out to be 45 minutes late (the previous one was even later) and not with him but "one of his staff" - another oncology doctor. The radiology report as a result of the scan (done at the same hospital a week earlier) had not been received so all I could be told was that my usual consultant and this "one of his staff" had looked at the scan and they felt the nasty bit was smaller. News of my thyroid they could not give until they'd had the scan report. That's good news then and yes, it confirms what I feel in my body. Hurrah! It also confirms that the chemo recipe is correct.

"How would I receive the report?" I asked. Another appointment. "Surely not," said I, "there's no need to waste time and resources on that?" They agreed that they might, after clearing it with all the relevant people, be able to phone me news of this picture of my own insides.

Next stop the GP's surgery to get a print out of the blood test results (and hopefully avoid the magnesium cock up last time). They had not been received there yet. Back home to ring the chemo ward, as instructed, to check that the blood results are OK for tomorrow's treatment. No results there either. "So what do I do?" I asked. Ring the GP. I did - they said the blood had been sent to the hospital where I have treatment (not the results - the blood!) Rang the chemo ward back and left them with the problem.

One of the lovely chemo nurses Sally phoned me back to say that my results are in, from the MK pathology laboratory (what does the surgery know anyway!) They are all fine though the haemoglobin is a little down and "they might want to give you some blood, we'll talk about it tomorrow". Arghhhhh - that's what I didn't want to hear and what all this liver and spinach eating is about. Perhaps if they do want to give me blood I can get them to do another test first, because the blood test was done two days before treatment and my subsequent two meals of asparagus (folic acid) spinach (iron) won't have been sampled.

Now the diagnosis didn't stress me much, the treatment doesn't stress me, the feeling crap for four days doesn't stress me, the persistently late appointments don't cause me stress, but this blood test routine is a fiasco. There should surely be a better way.