Thursday, 26 January 2012

Beligerent again

Throughout my life I've been prone to taking up cases which need sorting. I've already made waves in the direction of our local council on two issues this week. But my enthusiasm for this sort of activism has for the past year been sadly lacking. I just didn't have the fight in me. For the past year I've walked by on the other side so many times. Now I've changed again and I just can't allow things to pass - things that "someone should do something" about.

I'm at it again; my beligerence is back. But being beligerent about a cause, however worthy, does upset me - my psyche is disturbed. You have to have a passion about something to try to put it right. In the past it's made me very unpopular and I'm sure it will again. I expect again it will keep me awake at nights.

I have this favourite quote: "There are two types of people in this world: those who seek to make a difference and those who just take up space." It's so true on the surface but below the surface there's more to it than that. Maybe the price of action is far too high for many people. Perhaps those who are just "taking up the space" do it because they cannot bear to upset themselves or upset other people. And taking action on things that aren't right almost inevitably upsets someone, if it's only the scruffy bank nurse with the appalling cough, dirty uniform and a reluctance to ask how to spell the name of a drug.

So maybe I shouldn't think too badly of those who just let it all happen round them, who see something that's not right and don't interfere. Perhaps they're having a bad year too.

Sunday, 22 January 2012

Heavy metal info

I've been searching the net trying to find out how long traced of cisplatin can be expected to hang around in my system. The information varies greatly on the forums from a matter of hours to years. In the course of these investigations I've stumbled on a particularly nice description of the drug here. I've been quite curious as to how something that attacks dividing cells has failed to kill me. Mr Jon Steed has explained it in terms that even I can understand. It's all devilishly clever - both cisplatin and Mr Steed!

What I haven't yet found though is a definitive answer to my question.

Saturday, 21 January 2012

We've got them

We have three geopathic stress lines running through the house apparently - and one straight through where I sleep, another where I sit in the office. The very kind gentleman who offered to dowse for these lines came yesterday and discovered them. He has fixed the main one; acupuncture for the earth is how he described the remedy. I don't know exactly what he did but he said that it may take some months but the really harmful line, the one under the bed, will revert to nourishing force now that he's treated it. He's coming back again to sort out the rest when he's got more time.

Interestingly enough the cat does sleep right on one of these lines - apparently cats like them. Dogs on the other hand don't. I wonder where the cat will go when the other lines are fixed?

Don't ask me how the gentleman knew, but he also thinks that the geopathic stress was not the primary reason for my cancer. He explained it that normally these forces don't affect people unless you spend an enormous amount of time in them. But of course if you sleep on a line of stress then you're spending a great deal of time in it - which of course I've done. We've had our bed in that position since 1983.

Geopathic stress knocks the immune system apparently and hence illnesses are more likely to develop. Do I believe all this? - well I'm really not sure. But my geopathic stress practitioner certainly does and he's a very intelligent individual, with a very responsible job and he has a doctorate, so it's difficult to dismiss it all as the ravings of a deluded and unintelligent man. On balance I'll go with it I think.

Thursday, 19 January 2012

Done and dusted .... ah but ....

Today I finished writing the narrative of my treatment. It's been an unpleasant task but one that I feel is important because it carries lots of messages about the system and from it I'm sure there is much that can be extracted in order to change/refine systems in order to help others.

I finished it literally a couple of hours ago. Just now the phone rang. It was the Macmillan nurse. They've just had a team meeting and have discussed my case. The recent Xray does show a small area which the surgeon pointed out to me some months back, which he thought was likely to be scar tissue. The team at my local hospital has been reviewing my case and they've also seen this area and while they also suspect it is scar tissue, they want to be absolutely sure - hence they want me to undergo another CT scan.

I thought I had escaped the NHS for at least six months; it is not to be. Thank goodness the nurse had the presence of mind to call me and warn me of the impending letter about the appointment.

Wednesday, 18 January 2012

Dreams are made of fringe trimmings apparently

I've been editing my diary, the one I kept from the time of my initial consultation with the GP back in September 2009 and moving on from that, the blog. It's a project for the cancer professionals that I met at the first meeting of the cancer care partnership. They have expressed an interest in reading about my experience. Of course, that means delving back into those dark days of the three months before I knew what was wrong with me. They were very dark and although I kept my chin up, I now recall how utterly miserable I really was underneath the cheery facade.

While I'm engaged in this task I'm finding that my mind is quite troubled at night if I wake. I seem to sleep in small doses, waking often and having the most bizarre of dreams. I don't expect this to last long - probably for as long as I'm editing my memoirs. Unfortunately - or maybe fortunately - I can't recall any of the dreams now, but they're very vivid when they occur.

However they are not as wierd and wonderful as this, which was not dreamed by me but dreamed about me last night. The dreamer has told me that I tried to enrole her in a strange women’s health club where the ladies were wrapped in cling film and covered in uncooked pork pie meat (very specific). This was a very hush-hush experiment with amazing outcomes in terms of health and beauty, so I told her. Then I gave her a lift home in my car in which the whole of the dashboard was covered in hair where I had stored my fringe trimmings over the years. I was very proud of the fact that the cat’s hair was also stored on the back window shelf - for car insulation apparently.

Make of that what you will - and for heaven's sake don't dream about it!

Saturday, 14 January 2012

How it feels

The last few days I've met many lovely people who, when hearing of my narrow escape from the grim reaper, say: you must feel this, or your must feel that. Such exchanges have made me ask myself: what do I feel?

Well, I feel rather as if I've been on a year-long training course. The autumn of 2009 was spent preparing for the course, coming gradually to the realisation that I was bound to experience it and there was no escape and accepting that. I didn't want to undertake the course but as I had no choice I felt I'd have to give it my best shot. 2011 was the year in which I embarked upon the rigours of the training, with all that entailed.

As 2012 dawned, despite all my worries and fears, I have graduated with top marks. I'm pleased, everyone else is very pleased; life couldn't be better. But what now? There was no guaranteed job at the end of this course, so the big question is indeed: what now?

That's exactly how it feels. I've been spared, I've been saved, but for what? Should I get a job? Not sure about that - it would be a tie. There's something wonderful about being footloose and fancy free. I have plenty to do. Don't get me wrong. I've got local events to publicise, I've got the pub down the road to promote. I have a whole pile of reading relating to the cancer patients' group. Upstairs my sewing machine sits all forlorn with a couple of yards of dark purple velvet beside it. That's not the issue, there's plenty to keep me busy.

It's the grander scheme of things that calls for my attention. I now have to decide what to do with the rest of my life.

Tuesday, 10 January 2012

Three cheers for Hashimoto Hakaru

It's brilliant news. I didn't have cancer of my thyroid lobe but rather a colloid goitre (nothing to worry about) and Hashimoto's disease which is (thanks Wikipedia) chronic lymphocytic thyroiditis, an autoimmune disease in which the thyroid gland is gradually destroyed by a variety if immune processes - it's an autoimmune disorder and it's fairly common. Basically the thyroid packs up. I knew that was on the cards anyway since I've been taking extra thyroxine for the past few years, so the only difference now is that I have a name for it and I'll probably need to up my synthetic thyroxine replacement dose. In reading up on Hashimoto's I find it is seven times more common in women than men. It tends to develop slowly, over months and years - which pretty well ties in with my experience. Phew! I'm glad that's all sorted then.

After my appointment with the ENT registrar (I asked, he's an ENT consultant in training and a surgeon himself - he sewed me up and made a very good job of it), I went along to join the cancer patients' group that works with the professionals at our local hospital to improve cancer patient care. You know me - though I'd only just joined I still found something to say. Ears pricked up when I told one of the professionals that I'd been phoned about an appointment with the oncologist before I'd been for the diagnostic surgery. Similar interest was expressed when I explained how, having finished with the lung, I had to go back into the system via the GP to get the thyroid issue investigated. I'm going to write up my experiences in a short narrative, with notes where I think there were failures in the system, for the relevant professional. Then I suspect I'm going to find myself involved in lots of other committees and initiatives. It isn't what I would have chosen post-cancer; in fact I have stated repeatedly that I do not wish my life to be defined by my cancer. However her upstairs (Mountjoy to those of you who watched the first episode of Eternal Law) in whom incidentally I have no conventiional belief, obviously has other things planned for me. Is this what you would call a calling I wonder?

So, even though it is at this point I sign off from active cancer investigation and treatment, if you've enjoyed reading this blog do carry on. It's become a bit of a habit and I don't suppose I'm going to stop writing it now, though you might find the updates not quite so regular. Cheers!!!

Monday, 9 January 2012

Mandibular tori

I haven't told you, because I knew you'd just worry like me if I did, but I had an appointment at the dentist's today. The reason for this was that I'd detected on my inside lower jaw a lump, a very small lump, but a lump. I can't tell you how long it's been there nor when I first discovered it. I seem to remember being conscious of it some time ago. But I've been having problems getting to sleep and last Thursday the size of this lump as felt by my tongue at 2 o'clock in the morning was enorrrrrrrrmous. Hence the dental appointment.

Anxiety has been creeping up on me and I don't think it's just to do with the lump in the mouth. Generally I've been a bit 'down'. I suspect that as I'm three weeks into living with only half of my thyroid my thyroxine level is lower than it needs to be, but we've got the appointment tomorrow with the ENT consultant so no doubt that will be sorted then. Back to the lump.

Mandibular tori diagnosed the dentist, as he told me that I had a tiny similar occurence on the other side of my jaw. I couldn't feel that one even with my tongue but he said he detected it. I have benign growths. They're quite common according to Wikipedia. Depending upon your genetic heritage the prevalence of mandibular tori ranges from 5% to 40% of the population, being common in Asian and Inuit populations, and slightly more common in males. Now isn't that interesting. I've always thought of myself, because of my pale eyes, belonging to a very northern tribe; maybe there's a touch of Eskimo in me somewhere.

These tori are likely to continue to grow, but I don't need to bother with them unless they become a nuisance. Phew! Much relief and a lifting somewhat of the overhanging cloud that's been bothering me.

Sunday, 8 January 2012


This is going to be long - but stick with me, it'll be worth it - if somewhat gruesome at the end. Some years ago we went to visit a friend of my mother's who had had a stroke which left her pretty well imobile. We were invited in and we sat down on what looked like a sofa but had the most amazingly fluid structure. Upon enquiry, we were told it was a memory foam mattress which had been purchased for the stroke victim. Her daughter, being so impressed with the qualities of the mattress promptly ordered one for herself and her husband, who suffered with back problems.

As we were returning home we began to discuss our bed, the sticking-out springs and the fact that we met far too frequently in the centre. Time for a new mattress. The total memory foam mattresses are terribly expensive so we decided upon one which was high density foam with a memory foam topper layer.

The new mattress was duly delivered; I wasn't at home at the time so hubby officiated. That night we experienced the joy of a flat bed; no springs in evidence and a soft feeling instead. It was slightly harder than I'd envisaged but definitely a great improvement on the previous bed. We slept very well on the new mattress.

It had a lovely foam-backed fabric cover with a zip all round. One Saturday morning - about three months later - as I was changing the bedclothes I decide to take a peek at what was inside the zip. To my surprise I could see clearly that the memory foam was on the bottom, not the top. Silly us, we'd been sleeping on the wrong side. The mattress was duly righted; the label which said clearly it was not reversible, was now on top.

Hubby says he can't tell the difference, but I certainly can. The memory foam is much softer but it is incredibly warm. Even on the coldest nights you don't need a hotwater bottle. As soon as you hit those sheets your body warmth is reflected back to you. It's so warm in fact that in summer it's too much. So when we arrived at the first really hot summer's night of the season after the right-way-up saga, I decided to turn the mattress again. In summer we sleep on the high-density foam side, in the winter on the memory foam.

Those of you who have been reading this blog since my chemo may remember the problems I had with smell. During treatment I developed what I assume must be a sense of smell akin to a dog. Everything smelly seemed amplified; flowers were too strong sometimes and the worst bit was the horrendous smell when we got out of bed in the morning. (I warned you this was going to be - as the youngsters say - gross!) At first I thought it was down to me excreting the poisons I'd been filled with. It was only about four months down the line that I realised it was my enhanced sense of smell which was the problem.

I've always been a bed airer - in fact I leave beds open for the day until it's time to go to bed again. I use a mattress cover and I wash it frequently because all that sweat needs to evaporate somewhere. Yesterday when I stripped our bed I decided to change the top mattress cover and upon closer inspection I decided it was time to unzip that zip and battle with the enormous cover underneath as it had a slight, but unmistakable, chemo-time odour. I'm not sure if it's supposed to be washed but off it came and into the bath with detergent. Dark grey water ensued and there was even residue in the bottom of the bath when the water drained out. Ugggh! It was difficult to handle especially when wet because it was so terribly heavy. I keep one of those large plastic trugs for such operations but I ended up soaking wet after battling with it getting it into the garden to drip. It was several hours before I could bring it back inside.

Your think that's gross? Just wait. We next took the Dyson upstairs and started to vacuum the mattress. I've vacuumed it before, often, but never inside the zipped cover which I'd presumed - incorrectly - was not penetrable by dust. I even removed the stockinette cover inside that and we did both sides thoroughly. The thing about a Dyson is that you can see what you're sucking up. In this case a very fine grey/white dust began to accumulate. There was so much of it - I couldn't quite believe how much. Horrendous! It can only have been our skin. OMG!

Wednesday, 4 January 2012

New doors open

Isn't it strange how things happen? It seems some doors have suddenly opened to me this new year when I wasn't even knocking on them.

Those of you who know what I do work-wise will probably know that I run a whole load of business-orientated networking groups for our town. I was invited by one of the members of one of the groups to promote a blog via a women's web site. I wrote to explain that while I did blog, I wasn't trying to work that hard now that I'm semi retired. I explained briefly why. It turns out that the lady I was writing to has just recovered from cancer and major surgery and is the vice chairman of the local hospital's cancer patient partnership; a group which works to improve the treatment system for patients. Yes, it's just the forum with which I was hoping to engage about the ridiculous disconnect my lung and thyroid issues. I've been invited to their AGM which falls at the hospital (you couldn't make this up) an hour or so after my appointment with the surgeon at the same hospital next week.

That's the first thing. The second is that, up until the end of 2010 I was trying to find a platform onto which to move several of my networking groups. I won't go into details here, but I use a free platform at the moment and with that goes all the frustrations and difficulties associated with something you aren't paying for. For about four years I've been seeking an alternative that I would pay for and which I could monetise to cover the cost and make a little bit too. With closure of the business and acknowledgement of the severity of my diagnosis had come abandonment of that dream. Then at a business Christmas lunch this year I met someone who said he had a platform already developed, which he thought would do the job. He seemed keen to discuss it but I've heard this so often before that I'd put the matter to the back of my mind. But hey presto, he's been keen to fix a meeting and it's to be the day after the one at the hospital. It's funny how things happen isn't it?

Sunday, 1 January 2012

A new chapter

We had a staggeringly good new year's eve. I looked out all the finery and pomp that could be associated with dining. We sat down to dinner prepared by my culinary champion, my hubby, with nine round the table and another three we couldn't fit in busking it in the lounge. Everyone was adorned in some sort of silliness and so the night progressed. Daft games, all with prizes saw some familiar objects being reallocated after having done the rounds of countless parties. (I stuck a whole load of stuff we didn't want/need in one of our eldest daughter's bags when she left. She won't find it until she unpacks!

All in all it was an astonishingly fun night and I eventually went to bed at 3.15am, having cleared away the final dregs when everyone else had left.

For the actual moment of the new year we turned to the televised coverage of the London fireworks and while it was spectacular we all agreed that in this era of austerity, perhaps something less ostentatious would have been more appropriate. Goodness knows how many daily carers and hospital admissions went up in smoke. While it was magnificent, we all felt that someone somewhere wasn't quite in tune with our mood and probably the mood of the whole country.