Thursday, 31 March 2011

Role reversal and biotics

It had to happen. My hubby's been a taxi driver recently taking me from and to appointments in a neighbouring town. The tables were turned yesterday when he had a couple of teeth extracted. I insisted on driving him and to and from the dentist's and I've been dispensing oodles of sympathy since. It does make you very aware of the problems that those without cars and without partners must have when accessing NHS services these days. It's all very well consolidating services to become centres of excellence, but those centres should really be at the hub of public transport.

Today I've been for a consultation with a nutritionist - not one that I might get on the NHS, but privately. I spent about two hours with her, talking through my current diet which she analysed for balance. Despite what I think is an incredibly healthy diet it turns out it's not really balanced and there are some actions I need to take. Once all the chemo's out of the way there are other things I can do too - like giving my digestive system a jolt with some pro-biotics. I thought I knew most of it but it turns out there is so much more to learn. My nutritionist is now going to write me a long report detailing everything she told me and then it's down to me.

How am I? People keep asking that and it's a very difficult to respond because I feel better than I have in many years. It was similarly difficult to answer that health question in the census. The weight loss, having reached a plateau is now continuing very slowly - which is good because I'm still trying to come to terms with having a size 16 bum!

Tuesday, 29 March 2011


I've had the twinge back under my shoulder blade the last week or so and that led me to think that when we visited the clinic again today it wouldn't be good news. I'd even started to research alternative treatments so that I could have a plan in place for when the NHS has written me off.

Today however it was nothing but good news. Firstly we saw (probably - but I didn't ask) a registrar, who had been given the task of running the consultant's clinic as both he and his sidekick are away. She was delightful, engaging and most informative. She'd clearly read the notes in advance and was fully prepared. In terms of satisfaction for a meeting with an oncologist she scored 100%!

The scan result showed a decrease in the size of my tumour since the last scan of an amazing 50% - which was the figure the consultant quoted last week as constituting a spectacular decrease. He'd made it clear he wasn't expecting such a result but had left instructions in that eventuality for more chemo. There has also been a reduction in the lymph glands too. No report on the thyroid so I think we'll stop bothering about that. They picked up some bone sclerosis on my hip which had obviously been around since the first scan but not been noticed before. As there could be any number of causes for that, I'm not going to bother about that either.

It was proposed that I have another dose tomorrow, but I haven't been on the folic acid for a week. I checked with the chemo suite and they said I must delay the next cycle so that I can get seven days of folic acid in the system first. It all fits in rather nicely with a load of commitments I've made for this week.

And that's not all the good news. I've been trawling Ebay for pre-used size 16 long blue jeans - to no available. But a trip around some charity shops today netted not only some really cool fitting jeans in the right size but a rather snazzy striped top too. This is one happy bunny!

Monday, 28 March 2011

Two little letters

Just received the consultant's letter covering the meeting last week. It's quite useful as it fleshes out more of what he said then. He is not of English origin and has a strong accent which does make understanding quite difficult at times.

He has me down as "hyperthyroid" - as opposed to "hypothyroid", where the thyroid doesn't make enough of the hormone. I've just rung his secretary and she says he emphasised the "per" - but she's going to put it right and get an amended letter out.

I'm not sure what difference this clarification may make to his management plan of my illness. But at least I noticed the error before we got any further.

Another tenner

Can't remember if I told you about the lovely black velvet vintage Marks and Spencer bolero jacket that I found in a local animal charity shop. Sized an old 16 into which I couldn't even begin to force my arms, I knew it would never fit me. But it had a £1 price tag and when I examined it more closely I found that it dated to a time of St Michael, when everything was made in the UK. So I just couldn't resist buying it and last night it sold on Ebay for £9.99!

Now I don't need the tenner; that's wasn't the point of the exercise. What really delights me is that the garment will be sent to someone who wants it and who has put a value on it. That must be preferable to it ending up being "ragged" by the charity.

I forgot to tell you about the CT scan last week. It was fairly straightforward although they were exceptionally busy. I normally go early because it helps I know when they can fill places, presumably from "no-shows", but this time I had to wait half an hour. They leave the intravenous cannula in just in case you have a bad reaction to the dye that they use and you wait a further 15 minutes before it's removed and you leave. Well it got to 15, then 25 then 45 minutes and eventually I asked the receptionist to check as it was lunchtime by then. It turned out that I had been "wiped off the board" and forgotten about. Everyone was terribly apologetic and lovely - they always are - and they sorted me out very fast, so you can't feel cross.

But then, the day after, I had market researcher on the phone asking questions about the service I'd received relating specifically to that scan. Of course the delay came out in the questions. I feel very sorry for staff under the circumstances because they are trying their level best to do a good job but mistakes do happen I know. I'm always terribly conscious of the incredible presure they're all under and appreciative that they want to spend their days looking after people. One thing I know for sure, it's a job I never ever wanted. I could never stick a needle in someone else's vein. So thanks all you health professionals out there - and all you retired health professionals - for carrying out that tasks that I could never do. I'm extremely grateful to you all.

Saturday, 26 March 2011

I still bounce

Can you believe it, still March but it's warm enough to sit out and soak up the sun and feel that Vitamin D. I've done a fair amount of that today. Another couple of square metres of kitchen have been completed; in fact I've finished the kitchen and am now encroaching on the dining room and that's going to be a big job.

That task was followed by relieving some poor old pot-bound plants and allowing them to stretch their legs. I then stretched mine and accompanied hubby on a walk to the next village - three or four miles in all I guess. Tripping en route and falling onto my nose, chin, breastbone and knees proved that I still bounce. I got the feeling that my red bloods cell count is not quite up to normal as some of the gentle rises felt a bit tough but it's early days yet. Time to eat a bit more liver and steak I think.

Friday, 25 March 2011


I know, it's really tomorrow but I'm writing this on what to me is Thursday night still.

What a lovely day full of meetings with wonderful people, sleeping in the sunshine and then off to Matalan to find a pair of smartish black trousers. I was like a kid in a candy store. I'm normally a very fast efficient shopper. Not this time. It's the first time I've been able to select from the standard size rails for years.

Guess what? Although I don't think I've lost any more weight since I hit a plateau about a month ago, I had to buy a pair in size 16! Can you believe it - size 16 in Matalan! Unbelievable.

Tuesday, 22 March 2011

Getting the knowledge

Today went well. We had a bit of a wait - we both take books with us nowadays - but then we were ushered into the presence of the great man himself. I was able to put all my questions.

Apparently cancer is not common in those with hypothyroidism which I have had for some years now (which is where the thyroid ceases to function as well) - hence the consultant's gamble on it being lung as the primary site. The scan done in January shows my thyroid as being the same as it was before. The only way to be really sure about thyroid cancer is to remove the organ and chemo tends not to work anyway. Had the change in the size of my nasty bits in my lung been spectacular after two doses of chemo, they would have gone on to give me six.

So I have another CT scan tomorrow and then go to see the person who will do the clinic (when everyone else is away) a week after that. My consultant will have left notes as to what - depending on the scan result - should then happen once the scan report is through. If the nasty bits are reduced a bit or the same then it's radiotherapy. If they appear to have grown (which would indicate I presume the lung not being the primary) then the option is different chemo and/or take the thyroid out. The consultant reckons - based on his experience - that it will very likely be the radiotherapy.

Radiotherapy can have some side effects he said - a bit of soreness when eating and some coughing after - but shouldn't cause are serious debilitating problems for me. It will mean daily visits for a couple of weeks to a nearby town - the same one where I had the chemo.

I'm to ring the consultant's secretary next Monday morning to check that the CT scan result is through - so hopefully we won't have a repeat of last time when they had the image but no report.

All in all that was a very successful meeing. I feel so much better having a clear idea of where we are in the grand scheme of things. And the really good news is that it appears they still have plenty of ammunition to throw at my nasty bits.

Monday, 21 March 2011

You couldn't make it up

Well, I had a long chat with the consultant's secretary today - three separate calls in fact. It started thus: "I have your message. You wanted to know if your thyroid had been scanned and it has."

I said, "....and? I would like to know what the scan showed."

Then I had to explain the whole thing again, that I wanted to talk to someone - who actually knew about my case, who understood it and had read the notes - before I had to sign another consent form, this time for radiotherapy. The "member of my team" didn't cut the mustard. I asked who he actually was.

"He's a Staff Grade"

"But Staff Grade means nothing to me - what is it?"

"He's one down from a consultant."


The secretary didn't think she could manage to get me into tomorrow's clinic because it was already full. And there wasn't a clinic the week after.

"But I have an appointment for the clinic the week after!" I exclaimed.

Therein lay the next problem. Both the lead consultant and "a member of his team" were unavailable on the day I had been given the appointment. In fact there should have been no clinic scheduled that day.

She would ring me back and indeed she did. There would be a registrar doing that clinic but they didn't know who yet.

"Shall I send you a complaint form?"

"No, not at this point, I just want to resolve this. I wish to talk to the consultant as I've been trying to get information for six weeks now. I've been attempting to do it through my link nurse," I said.

"Oh you should have come direct to me," she said.

"Well I would have done had the little booklet told me to do that instead of referring me to the link nurse. Of course if I cannot get to speak to my consultant then I will be making a complaint."

The secretary said she would try again to resolve the problem and ring me back again. True to her word she did. Alleluia! I now have an appointment with The Man tomorrow afternoon.

P.S. Very productive day all round; I've re-grouted kitchen tiles, re-varnish and re-sealed all round sink.

Saturday, 19 March 2011


Yesterday I met a nutritionist and I've decided to consult her on my diet and learn a little bit more about how my body responds to what I ingest.
Already - and I haven't seen her formally yet - she's referred me to tumeric. It is on my list of 'consumables' but I hadn't done much research until today.

Turmeric is a rhizomatous herbaceous perennial plant of the ginger family (so says Wikipedia) and it appears to have the potential to have some sort of positive effect in the case of some cancers. I have been adding it to food - not that I actually like the taste much - but I think I should consume more of it.

Couldn't get my link nurse on the phone today so in the absence of any progress on my attempt to see the lead consultant, I rang his secretary. She was away but her position was being covered by another consultant's secretary. I wasn't going to burden her with my story but she insisted that I tell my tale of communication failure and said she'd leave a message. If I haven't heard from anyone by Monday afternoon, I'm to ring again. Her insistence that I wasn't being a nuisance and that's what they were there for was so encouraging. I came off the 'phone feeling quite elated even though I'd got no further with my quest for knowledge. It's just amazing what a little by of empathy can do.

Thursday, 17 March 2011

Busy, busy, busy

Far too busy to be blogging philosophically today. Just been to my first business networking meeting since November - great fun. Got lots to do; press release to get out, meetings to fix.

Nurse away - someone else rang back - so there's still no movement on the rather basic requirement of my being able to talk to a health professional who knows all about my case.

Total for selling over-large clothes on ebay currently £65.90 - money spent replacing those with items a couple of sizes down is £64.24. Impressive eh? Oh - one more thing - at last I have managed to buy a bright purple top which really matches those shoes.

Tuesday, 15 March 2011

The pursuit of knowledge

I've forgotten to tell you that I checked the thyroid level blood results last week and they're fine. That means that my high levels of energy and the feeling that I'm running all cylinders - plus a few - are entirely natural. That's really good news.

Yesterday I pursued my allocated link nurse about further information I'm hoping to get from the oncologists about my thyroid. She'd managed to get me discussed at the weekly meeting last week but unfortunately she wasn't able to be there herself. From the minutes she found that there was talk of involving a cardiologist.

"Cardiologist!" said I in disbelief. I was anticipating the involvement maybe of an ENT consultant or even an endocrinologist - but cardiologist? One thing that has been constant through all this is my healthy (as far as I'm aware) heart and my surprisingly (for my age) acceptable blood pressure. I was clearly very baffled

Would you like to see the lead oncologist at your next appointment?" she asked.

"Yes, please," said I, "can that be arranged?"

"Yes, just say that's who you want to see when you report to reception."

So it's that easy. Problem solved, I thought. However my delight was not to last when she told me that he's away on the date of my next appointment and the week after. We agreed that this situation was less than satisfactory and my nurse said she'd try to push for an appointment before the scan, today in fact. Now that would be good. I'm waiting for the phone to ring.

Monday, 14 March 2011

Sunshine rules OK!

What wonderful weather. I dozed for 45 minutes after lunch in full sun and decided in the end that I should come inside because I didn't want to overdo it. I have lovely little sunshine roses in my cheeks. We're only a week away from the spring equinox. If you think about it, today's strength and length of sunshine corresponds with what we might expect at the end of September - so it's hardly surprising that it's so lovely and strong.

A friend sent me today a load of information on Vitman D. It's now acknowledged that we need sunlight. Actually I've never been in doubt about that, preferring to listen to my skin's opinion on the amount I should receive rather than plaster myself with goodness knows what. Reason tells us - if we care to listen - that homo sapiens has evolved in sunlight and anything which has been a constant component of our existence during our millions of years of evolution must of necessity be essential to healthy life. It's just plain common sense. And while we're talking about common sense, bearing in mind I'm looking for a project, I wonder if it's time I realised a great ambition of mine - to establish the Campaign for the Re-establishment of Common Sense (no, that isn't a mnemonic - sorry).

Sunday, 13 March 2011

Normality for a time

It's rather nice that for at least the next week I don't have to think about hospitals. I can just get on with living. I do now sometimes forget completely about my condition as I feel so well and full of life.

Today, in between entertaining visitors and cooking a roast dinner for six, I've managed to list on ebay a good proportion of the over-large garments that remained in my wardrobe. There are still a few more to go. I had another sort out this morning. I'm never going back to the size I was because my anti-carcinogenic diet will continue. So if I'm going to make way for new clothes I have to make space.

Yesterday I had a shopping spree - on ebay of course. My sales will, with any luck, cover the cost of my new acquisitions. It's all great fun and terribly 'green'.

Saturday, 12 March 2011

Yellow Brimstone

After having a thorough clean through the house this morning I put up the washing line again after its winter break as it was so warm. I then walked up the hill to see how the working party was doing cleaning and repairing the inside of our church tower. The wild daffodils (Narcissus pseudonarcissus) were just beginning to flower - they cover a large part of the old churchyard; it's an incredible display when they're all out.

On my way I saw a Yellow Brimstone butterfly - and again while standing in the churchyard saw either the same one again, or its cousin. I declare therefore that spring is here.

Thursday, 10 March 2011

Grime of ages

I forgot to mention to you that earlier in the week during the grot phase I actually did a little domestic job. I investigated the accummulating pile of tablets and veterinary cures on the shelf in the kitchen. As a result I more than halved it and a local chemist has now taken delivery of the residue, some of which dated back nearly 20 years! It was a liberating experience and today I've carried on the crusade in the same rather grimey area of the kitchen which contains odd useful things and recipe books.

Of course when you start moving things about you start discovering the filth. So today's task was to decorate the wall around the shelves and to clean and varnish them. The worst bit of this clean up was trying to get fatty dust of recipe books - yuk - but they're done now and I'm waiting for them to dry off before I reorganise the area. Hubby's slightly nervous about all this moving things around. Will he ever be able to find anything again?

Oh and before I go, a nurse rang me back and she's reorganised the consultant's appointment for a week later. It appears there's no chance of having the scan earlier. It is good news really because it means I'll be really well and truly over the chemo by then and I get another week of being able to please myself about what I do and where I go.

Wednesday, 9 March 2011

Sparkling then snookered

I've definitely got my sparkle back today; in fact a friend said exactly that. It got even better when I received more flowers and an unexpected visit. To top it all my hubby burst through the door, back from a successful shopping trip, with yet more blooms though his were purloined from a forsythia shurb overhanging a highway. ('Purloinen' is from Middle English and means to remove. It's also found in Anglo-Norman as 'purloigner' and has Latin derivatives meaning 'away' and 'long'.)

Those of you who aren't familiar with hubby need not worry; he loves shopping; he wouldn't do it if he didn't. He never volunteers for ironing. So I feel not a shred of guilt that in this forty-plus years marriage he's always done the shopping.

From all this you'll gather that things were going quite well today, that is until my next scan appointment duly landed on the doormat. The big problem is that it's scheduled for the day after my next appointment with the consultant, at which we are supposed to discuss the scan results and the next phase of treatment. Since diagnosis I've been issued with booklets about all sorts of things but it won't surprise you to know that none of them covers this eventuality. Oh well, it all makes work for my liaison nurse to do. I reckon Flanders and Swann could have had a field day: "Twas on a Wednesday morning that the nurse she got a call ......."

Tuesday, 8 March 2011

Sun, bees and nuthatch

Well the sun's out again and I'm feeling so much better. I expect there are bees flying again and I've just seen the nuthatch. But my Reiki session yesterday revealed that once again I'm not looking forward enough. Yes, I've got the summer sorted and can almost smell that fresh crushed grass and canvas in warm sun as we set up at a folk camp. But beyond that I have to admit I'm having a problem imagining next winter. This one has been so cold, so negative in so many ways - although I am by no means depressed - that I just don't want to contemplate shortening days, not yet anyway.

My Reiki practitioner suggested that I concentrate envisaging my granddaughter's wedding or something really far off. Hm - those who know my granddaughter will understand how difficult that one is going to be! I think what I need is some monumentally large project, something really big which stretches into the far future. Any ideas?

Sunday, 6 March 2011

Grot day two

It seems a terrible waste just to wish a day away but I have to admit to the terrible truth that that's what I do on the grot days. It's 11 pm now and I have to admit I'm feeling much better than I did earlier today. I reckon with a good night's sleep and Reiki tomorrow I should be well on the mend again. Night, night all.

Saturday, 5 March 2011

Grotty day

The only real downside of my chemo, apart from the hair thinning, is the three or four days of feeling strange and nauseaous. Today is the second of my most grotty days. I'm sitting in front of ITV3 watching some jolly good TV from days of yore; old British programmes with lovely sets and wonderful costumes. Tomorrow should be better and by Monday I anticipate bouncing back to normality.

Friday, 4 March 2011

Slightly strange

Not sure how I feel today, slightly strange is probably the best description. I've discovered a new drink which is nice at this time of heightened smell and odd flavour experiences: ginger tea. One of the legacies from the week away was that we came home with a whole pile of ginger. If I use a garlic press and crush a slice, I get ginger juice and squashy bits, which when added to hot water make a lovely tea.

I did have a desire to get onto the rowing machine this morning in the hope that speeding up my metabolism might make the effects of the chemo pass quicker. But common sense has grabbed hold of me. Given that various side effects are being clevery masked by steroids and anti-nausea drugs, I won't be able to read my body's signals too well. So it's probably wise to proceed with caution.

So instead I'm spending the day learning the music notation program so that I can start converting my father's recorder arrangements into digital files.

Thursday, 3 March 2011

Not an unreasonable request

I have now spoken to my ANP (nurse specialising in lung cancer and attached to the team). She does not think my insistence on getting some clear answers and explanations to my questions unreasonable and will bring up the case at the next team meeting and get back to me. I was very reassured and consoled by my phone conversation. In fact I got the feeling that she felt the matter of lack of information was a little more serious than I did.

So far I've remained relatively calm and serene through all the hiccups of the process. But I realised after Tuesday's meeting that I'd gone into attack mode and of course that means storing up some new baggage which is not good for this temple of a body that I'm creating. So to be thought reasonable is a great relief.

It's strange, the chemo does appear first to affect the brain. If I ever have any 'down' feelings they are rare and usually on the first few days after chemo. Today I found I was thinking negative thoughts - it didn't last long - just a few sconds and I snapped out of it - but it does happen. I know some people who read this blog think I'm putting a gloss on having this life-threatening illness, but believe me I'm not. I really am having a lovely time at the moment in my semi-retirment and the black cloud only grabs me just occasionally.

Wednesday, 2 March 2011

Chemo again today

We arrived slightly early at the ward today and there were no hold-ups so my chemo dose was completed by 3.15 pm and we drove home in sunshine. That makes a change.

Guess what? The chemo nurses queried that it was my last dose. They normally give six and that was what it said on their 'pink sheet'. It was important to get this right because they provide enough of the necessary drugs that I take before another dose. After querying this with the lead consultant's secretary I was told that at the next consultant appointment, after the next scan, it would be decided what the next stage in treatment would be. Hm - the letter I was given yesterday clearly states "radiotherapy".

Tomorrow I have decided I will ring my specialist Macmillan nurse. I will suggest that either she gives "a member of my staff" the list of questions which I intend to ask in three weeks (to give him plenty of opportunity to read the notes and prepare answers) or my appointment is changed so that I can meet the lead consultant who is actually making the decisions about my treatment regime. I want to know why four cycles and not six.

Tuesday, 1 March 2011

"a member of his team" .... again

My consultant appointment was with one of the "member of his team" variety (the same one as last time). This time he got the full works. I asked all the questions that still required an answer and he actually had to read my notes in some depth before we let him off the hook.

Contrary to what is written on the Macmillan-originated Pemetrexed and Cisplatin information sheet given to me by the hospital before the start of my treatment, that normally six cycles are given, I learned I am to receive four so tomorrow is the last one - whoopee! I think that's rather good news. I've just researched and found that four is the standard in the UK so why the document I have says six I don't know.

The Macmillan nurse sat during the consultation in a pose that I can only describe, reading her body language, as "embarrassed". I too would have been embarrassed if I had been asked to witness a consultant demonstrating that he had read very few of the patient's notes.

I was trying to find out what the situation was with my thyroid. "A member of his team" looked slightly puzzled by the question. He shouldn't have done - I asked him the same question last time. Do I have thyroid cancer too as the lead oncologist led me to think was possible? He looked back in the file and eventually found the biopsy notes and told me that it was negative.

"Not so," I corrected, "it was inconclusive - you people don't give the all clear you settle for inconclusion," or words to that effect.

I couldn't help feeling he was trying to fob me off on the basis that someone with my lung condition was on too sticky a wicket to bother about my thyroid. The fact that I'm going to beat this is probably not on his agenda.For goodness sake, the multitude of lung biopsies were "inconclusive" but that didn't put me in the clear for lung cancer! He then confirmed what I had drawn from the highly technical copy letters to my GP, that the lung cancer was only confirmed by the tissue in the lymph node.

We went on to discuss why the radiographer was so insistent that he had to scan the thyroid and why that might have been. "If there had been anything untoward visible they would have said," came the reply, "but we'll ask them to clarify." I wonder if they will. "What discipline covers the thyroid?" I ask. "ENT" That maybe explains a lot. I was with the ENT guy this time last year. He looked at my voice box and gave me the all clear referring me to the speech therapist if you recall (apologies if I'm now repeating myself). Obviously thyroid cancer wasn't on his agenda either. It was agreed that at the CT scan that I will have two weeks after this next dose there will be a specific instruction to look at the thyroid. (Wasn't that what happened last time?!)

My next consultant appointment is in three weeks time and is headed "radiotherapy". That means there's a lot more different chapters to read up on and study so that, dear readers, I can inform you as accurately as possible.