Sunday, 31 July 2011

Tonight the lounger

Sleeping at night is still a problem. I take off the passion-killer front-fastening bra and try to sleep on my back, as I did in hospital, but I'm still not very good at doing that. Last night I resorted to the chair again at about 2 am. After a Marmite sandwich and half an episode of the Tudors I completed the rest of the night's sleep sitting up.

Tonight I'm going to start on the sun lounger because I suspect it's going to be even more comfortable than a chair. I reckon I'll have this cracked by Wednesday - when the staples come out and I can probably get back to sleeping on my side as I always have done.

Saturday, 30 July 2011

"We live in a culture that makes it nearly impossible to make healthy food choices. A number of food industry and political factors keep us sick and fat."

When I walk in to a supermarket these days I know that I am unlikely to purchase around 98% of the food displayed. Since I've started looking at labels I've been appalled at what I've found and I'm not alone. Various of you have sent me to web sites and articles - mainly, but not always, from the US - where impassioned advocates of healthy eating keep banging on about horrors of the food production industry.

It's tough when I eat out because I know full well that practically everything which has been manufactured as a food stuff will contain refined sugars - often several different ones. Don't make assumptions about savoury sauces as they too have sugar aplenty. And I won't mention all the other unpleasant additives and coatings, the toxins in recycled packaging and those that impregnate food stored in plastic (and that includes plastic-bottled water and other drinks). I could go on and on - and when you see me, I probably will

Let me just leave you with this simplistic piece of advance from an American medical doctor and his advice to US shoppers. I think it's so sad that someone should have to say these things. I would add "Don't shop in supermarkets" - but that's becoming increasingly difficult. When all the independent bakers, butchers and green grocers have gone we will have no choice whatsoever. Think on that next time you fall prey to the allure of Tesco.

"- Buy around perimeter of the store (that’s where the healthy stuff is)
- Don’t go down aisles (that’s where most of the junk food is)
- Don’t buy food in a box
- Or with more than 5 ingredients
- Or with ingredients you can’t pronounce
- Or with a cartoon on package"

Thursday, 28 July 2011

Home at last

It was lovely coming home. I'm frustrated somewhat by the realisation that I have not prepared adequately - I do not have the right bra to wear. I need something very soft - a sports bra - with large straps, front-fastening and no underwiring, to scoop up these droopy bits and stop the drag on the chest drain sites when I walk. I've just ordered one; it should come tomorrow. Once I have that I should be able to start on some little walks up and down the lane and gradually further afield.

My pain is controlled just with paracetomol - I find it hard to believe this to to be the case. But that's all I need. I have a long curved scar down my back with what looks like metal staples in it. I know, you just can't believe that it doesn't hurt horrendously, but it really doesn't. When I move I can just feel that there's something there - but that's all. I am to make an appointment with the surgery to have the staples removed next week - when I also need the drain site stitches out.

Sleeping at night proved a bit of a challenge. If I laid on my right side I'd be putting all my weight on the drain sites, if I laid on my left the weight of my breast would pull at the drain site. As I'd slept well, propped up on my back in hospital, that seemed the best solution and indeed it was.

I do so miss that hospital bed though. The mattress comprised different sections, so that when you put the back up, or the middle up and the feet down (so that it took on the appearance of sun lounger) the little sections could move around. It was really comfortable and made propping myself up very easy. OK, you can do it at home with pillows and a husband, but it's not quite the same as being able to press a button or two.

Wednesday, 27 July 2011

Home James, and don't spare the horses!

I really am to go home today. My potassium was proved to be low - the blood test illustrated that. I've been given tablets to sort it out. My heart feels completely normal now.

The bulldog clip around my chest feels less tight today and I do have every confidence that I'll be fine at home. There's no real need to cough either - the annoying post-surgical burble has gone. Sleep is something that my body requests every couple of hours so I just make myself comfortable and dose.

P.S. Another little heart flutter incident this morning - nothing terrible though. I'm to go home with a beta blocker and asprin. These are to mitigate against the chance of untoward clots in this post-surgical period.

Tuesday, 26 July 2011

Whoopsie daisy

Just before the ward round swarm arrived, while I sat calmly in a chair reading, my heart decided to undertake some acrobatics. It was, for about an hour, popping in the odd syncopated beat here, missing another there. Very jazzy! Apparently it is common post surgery so nothing to worry about. I'm just glad it happened when it did. I've been given potassium and magnesium; some blood tests will also be done. The heart rhythm slipped back to normal in any case, before the medication.

This time I managed to interrogate a doctor and what's more the lab results are back. The tumour which was in my two lower lobes has all been removed, as have they. The lymph nodes that were removed this time contained no cancer cells, unlike those that provided means of diagnosis last time I was here.

For a couple of hours this morning I had no cannulas or pipes sticking out of me. Sadly it didn't last; I now have a ready connection in the crook of my arm just in case ..... and a vampire has just drained me of another batch of blood. I seem only now to be on paracetomol for pain relief, with an option to add tramadol if necessary. But all in all I'm very comfortable now.

Monday, 25 July 2011

Bulldog clip effect

I'd assumed this whole process would be extremely painful at some point. But when a couple of weeks ago I bumped into a friend whose job is as a general hospital pain care nurse and she told me it doesn't have to be, I believed her. The epidural was fantastic and it was only when I'd fallen through a hole in the routine after it ran out, that I began to feel pain.

And it wasn't pain as generally thought of, as specifc and centred. No, instead it felt as if the right hand side of my chest was gripped by an enormous bulldog clip. I only realised that I was experiencing severe pain by the fact that my breathing had shallowed and I was tightening all sorts of unlikely muscles.

The pain manager here has prescribed paracetomol and tramadol together, but for some reason the ward nurse only gave me the former. As the bulldog clip once more began its grip I asked for the rest. It looks like I'm going to have to keep my eye on this shift at least.

Not today

The ward round occurs like a sudden swarm. It buzzes through the room with the senior surgeon in the group (I've seen four different ones so far) in the lead with a crowd of gowned gentleman in attendance, possibly the odd doctor loosely appended in civies and a clip clop of (my collective noun for) nurses. Unless you're prepared with your questions the whole circus has been and gone before you've had a chance to empty your mouth of Weetabix.

One drain to come out today, the top one. I think that's the one draining the sac around my lung. So I'm not going home today; maybe tomorrow.

The Jack in a Box vicar appeared again today and said something other than 'good morning' but, as my face was covered by a nebuliser mask and its rattly sound obscured all conversation, I guess I'll never know what it was.

Sunday, 24 July 2011

Normality rating

They're very keen here on rating things - degrees of pain, amounts of cold sensation, that sort of thing. Those that know me well will therefore understand the rate of my recovery when I tell vou that today I interviewed a member of the catering management team on the topic of the fourth piece of dirty cutlery to be issued to me within the week.

Now you see him, then you don't

It's three times now that I've seen the apparition and I'm convinced it is real. It happened about this time in the morning when I first came back to the ward. A white haired gentleman suddenly popped his head round the wall which divides my space from next door's. He was wearing a dog collar. He waved cheerily, and was gone. It's happened twice since - just a fleeting smiling lurch into my room. I guess it's the church in action; very fast action.

One other thing that's funny and I must tell you is that my epidural pump operates every few minutes and makes a tiny teeny noise just like a kitten mewing.

Saturday, 23 July 2011

So what exactly was it like?

Well, I was wheeled down to theatre at about 1pm on Wednesday. Something went into the cannula in my hand and I knew no more until I came round at about 6.30pm in a recovery room. There was no pain whatsoever. All pain management is done automatically via the epidural. From the recovery room, where I felt quite able to discuss with the porter my favourite holiday, I made my way - or rather the porter made my way - to the High Dependency Unit where I spent the night.

I was then transferred back to the ward but not into my private room. The days go by in a series of routines. I guess I’ll just about get the hang of them by the time I leave here! I’m surprised how much I manage to sleep both during the day and at night.

Running from my chest are two pipes which drain a thin red liquid from my lung. They are pretty disgusting to look at but they seem to be doing the job. Somewhere in my back is an epidural block which removes sensation from the area of surgery and also my boobs!

The annoying discomfort is the itching which is I understand a side effect of the epidural. I’ve declined something to stop this; I think with all the potions and pills which have been poured into me I don’t need any for more to remove the itching! Visits to the loo are interesting and require the assistance of a staff member to carry the two little chest drain buckets and the epidural pump.

Two things have been a problem. The first was very simple. Because the admissions clerk didn’t do her job properly, I started off without identity wrist bands. In fact she didn’t even let me into her office! So the ward printer being out of action someone had to write out manual bands for me. Theatre then removed one in order to install a wrist cannula. So I still have one handwritten ID band OK, but I’m sure not it's up to standard.

The second thing is the food. Twice because now my throat is swollen, I have eaten something which has failed to progress further than the top of my oesophagus. It’s a horrible feeling. Eventually I have managed to see a dietician who prescribed puréed food.

Of course it didn’t arrive last night but due to a spot visit of catering management (who got precise feedback on the food quality and cleanliness of cutlery) there is some hope it will be there for lunchtime and this evening. I don’t care what it looks or tastes like as long as it’s nutritious.

The one discomfort I have is in my stomach and comes as a result of daily injections of a blood thinning drug. One dose of this must have been given incorrectly and has caused a small bruise and some discomfort. It’s incredible when you think what has been done, that this is my only pain.

Had a shower this morning and all my dressings changed. That was fantastic – all the little itchy bits being seen to. Simple pleasures eh?

Another new day

My days are spent in a blur of ward rounds, hot drinks, washing and cat naps. My nights comprise reading and naps. I still have two chest drains and the epidural but miraculously no pain. I can feel this morning that the itchy healing process is under way.

Friday, 22 July 2011

Ward round

Doctors have just been round and they are pleased with my progress. So much so that I could be home by Monday!

[Blog fairy]

Wednesday, 20 July 2011

All done!

I arranged for my blog fairy to update you following my operation:

In recovery. Awake. pain free. Speaking. Smiling. Doing well

Everlasting light

I cannot help wondering if patient outcomes might not be improved if we could sleep in the dark. Even though I have my own room there's a light always on. I now have a mark on me to show which side to operate and have signed the consent form. Still don't know exactly when yet.

Tuesday, 19 July 2011

Happy bunny!

Got my own room with en-suite. Found Radio 4 on the TV so am a happy bunny. Choosing non-processed sugar-free food on hospital menu is a bit of a challenge. CT scan, ECG and lung function tests today.

Update: Lung function test better than the normal average!

Monday, 18 July 2011

The waiting game

The letter I received with the admission form advised me to ring this morning to find out if a bed was available. I have and there's no definite answer yet. I therefore await a phone call in the next couple of hours or so. This makes the be-there-by-2pm requirement a little hard to meet. But the admissions manager said it wasn't imperative, as long as I arrive sometime in the afternoon.

Yes, OK, I admit I'm horrendously stressed about this, so much so that this morning a small cold sore appeared on my bottom lip. Once you have cold sores you always have them. They're likely to surface at low moments - hence, I guess, the title 'cold sore'. I really could have done without it but there you go. I've checked and it makes no difference to whether or not they admit me - big sigh of relief. Having come this far I don't want to be turned back by such a small thing.

I know you all think I'm incredibly resilient to the ebbs and flows of this cancer journey that I'm going through, and I guess I am to a great extent. But this one little bit of the road - the interminable waiting - is the one that has the big potholes and causes me anguish.

Once I'm there, once I've signed the forms, given my consent, it will be easy. All I'll have to do is to lie around reading novels and doing what I'm told. Not difficult. I've no problem with the surgery aspect. I'm fine with that. It's just this ruddy waiting that's a pain.

Oh well - either they haven't got a bed - in which case you'll hear from me again later today or they have, in which case watch this space again in about a week. Toodlepip! *

*A bit of a mystery this word. One guess is that the old fashioned upper class slang for 'goodbye' derives from 'toodle-oo' which in turn comes from French 'a tout a l'heure'- translated 'see you soon'.

P.S. The call came - much relief here - lunch and then we're off.

Sunday, 17 July 2011

Two things

In all the excitement I've completely forgotten to tell you about the side effects of the chemo. You might recall that I'd begun to suffer a strange feeling in my toes and to a lesser extent in my fingers. Well over the past five weeks or so the toes were getting worse, the odd feeling gradually creeping up them and seemingly to the soles of my feet. It's very difficult to describe the feeling but if I say it's the same dead feeling you get if you lean on your arm and the fingers go numb. There is still some sense in them but it's an abnormal sense.

My regime of Vitamin B complex however may have helped because certainly it's getting no worse and I reckon it's getting better. This is a great relief to me because I'd begun to find I was becoming slightly clumsy which didn't bode well when I tried to pick up a needle.

The other thing - well that's the hair. A couple of weekends ago we were in the company of someone else who's had chemotherapy. In the middle of lunch she turned to me and asked if I'd looked at my hair to see the chemo bands. I hadn't so I promptly pulled out a hair to examine it. Sure enough there were six bands. I could see where the hair had become thin followed by a small bit of normal followed by a bit of thin, and so on. It does explain exactly why I lost some hair and it thinned out. I guess some folicles, having grown a strand for some years and then experiencing the chemo, decided that time was up for that strand - time to start a new one. I don't have a microscope but if anyone does and is curious about this and would like a sample, I'll be more than happy to oblige. In the meantime where my scalp looked a little thin it now looks normal, presumably due to all the new little hairs which are growing. So far they appear to be a perfectly normal muddy brown colour - another reason, though a vain one, to be joyful.

Saturday, 16 July 2011

Rain rain go away

We're sittiing in the van and its just stopped raining. It's just over an hour to go to our nephew's wedding. We've eaten bacon and eggs, both had a hot shower and I even washed my hair! Suddenly the appeal of crushed grass and wet canvas doesn't seem quite as strong as it was. I'm starting to see the real benefits of glamping.

Thursday, 14 July 2011

Dorset is beautiful ....

...... wherever you go, and the rain in the summertime makes the wurzel bush grow ... etc. I think we might be about to experience some rain in the summertime for tomorrow we're off to a family wedding in Dorset. I'm really looking forward to it. Franc the Van is nearly ready; my hat is safely stowed in the van's safe (it's the only place it's not likely to get crushed).

We meet the rest of the family for a meal on Friday night, Saturday is the wedding and reception and Sunday we return just in time for me to prepare myself for Monday's trip to hospital. I expect to be able to blog one more time beforehand. During my hospital stay I've asked one of our daughters to update the right-hand side panel of this with news of my physical state and as soon as I'm able I'll be blogging again myself.

Have a great weekend everyone - I'm going to.

Wednesday, 13 July 2011

No soap bars please

Before my previous stay at Harefield, when I had diagnostic surgery, I checked the web site to see what I should take into hospital. I've just done it again. The list is minimal. One specific is liquid soap only; no bars of soap or soap dishes. I suppose that makes sense since nasty bacteria could very easily make a warm cosy home in a grubby soap dish.

Before the procedure last time I had to wash myself and my hair in a hospital-provided anti-baterial liquid soap and render myself a suitably sterile sacrifice to the surgeon's knife. I assume it will be much the same this time.

One of the reasons why staff don't like people to bring a large number of items with them is the time it takes in admin when a patient is moved from one ward to another. It takes two members of staff to complete the procedure, one nurse to make a list of all the items, the other checking it, both signing to say that it's correct, before the belongings are passed to the next ward.

So this time my list will be minimal. As there's a bit less of me now than there was, I'm just going to check that my pyjamas (bought specially for last time) will actually stay up when I'm on the move!

Tuesday, 12 July 2011

Counting down

The letter arrived today. I'm to go to the hospital next Monday with the operation scheduled for Wednesday. Of course, if anything goes wrong at the hospital end it may not happen then. As with all hospital admissions you have to ring first to check they have a bed.

I'm trying to prepare myself for being out of commission - water plants, do the housework, clear the pile of washing. And of course I do wonder what I'll be feeling like when I get back here. How much pain will I be in? What will I be able to do for myself? How long before I can drive again? Those sorts of questions. I suppose we all do it when approaching a big event or situation. If mentally you prepare as much as you can, then you can remain - to a certain extent - in control of your situation.

The hardest part will be for those who wait for the news that the surgery went well - which I'm sure it will - and that I've come round OK. It's easy for me - I'll be out of it.

Sunday, 10 July 2011

I have a voice

My voice has been failing for the past few years. Notes have been missing, making others has been extremely difficult. I put it down first to the menopause. Then I thought - once I knew I had cancer and that my thyroid was suspect as well as my lung - it was definitely the thyroid. A couple of years ago I had an investigation into my voice. The ENT specialist gave it the all clear, the voice therapists suggested excercises - but they didn't work.

I'd resolved that the strong and loud tones I was once able to produce were long gone. If I wanted to make beautiful music again I'd have to play the violin. It wasn't nice to think I couldn't do again one of the things I really love doing, but I'd accepted it.

So in the week just gone, when I suddenly had the urge to sing while driving back from the shopping centre I expected the usual to happen. Some notes would be impossible to form, others would lack control, some would be suspect in pitch and general I'd feel frustrated by my inabilities. Not so this time. I sang loudly through two songs and I still had plenty of notes left. I hardly dared to hope that my voice was returning, but there was that little window of hope that just maybe ....

Yesterday I met another singer and compared notes. She'd had something similar happen after a very bad chest cold. She'd gone through the same routine as me but the speech therapist had given her a lot of different exercises and they'd worked. Her voice had in time returned.

So today when I went to church I was wondering what would happen. I tried not to hope too much. The discipline of singing hymns is a very good one to try out a voice. My driving experience was not a fluke. My voice was all there. Four hymns and I could still have sung more. OK there were one or two little creaks - or should I say croaks - but most important of all, there were no big gaps in my range. It's still early days and I know I need to practise because it's been so long since I used my voice properly. But at the moment it's looking good.

Thursday, 7 July 2011

The man with the fountain pen

We were ushered in. He shook our hands and we sat down, us facing him across the desk, him looking at a computer screen. This time I didn't ask to see it - why, I'm not sure. Perhaps it was for fear that seeing in graphic details the enormity of what was planned might trouble me. He screwed up his face; no-one spoke. You don't speak unless spoken to in his presence. He tabbed up and down the screen for what seemed forever. I feared we'd come all that way for nothing. Then he lifted his head and looking directly into my eyes and
said: "What are we going to do with you?" - as if I might have the answer. I wasn't sure what response was called for so I gave none but smiled my best and most winning of smiles.

Technically surgery to remove the lower and middle lobes of my right lung is possible; whether all the troublesome tissue can be removed is another question. Taking out the whole of my right lung isn't something he would do. The mortality rates (after chemotherapy) of complete lung removal are too high. It's all do to with the damage that chemotherapy itself does to the lung tissue. The complication rates for taking out two lobes is very low under normal circumstances (without chemo); the stats on taking out two lobes after chemo aren't available as it happens so rarely.

Had he done it before? "Oh yes," he said with no hesitation. He has not lost a patient doing it. But of course there are risks, as with any surgery. And whether or not it will effect a complete cure, only time and the necessity for a Zimmer frame will tell.

The date for surgery means that I get to go to the family wedding for which I have collected a two piece outfit, a blouse and a camisole from charity shops, a hat from Ebay and that impulse buy of sandals that I made the other day. All through this dates for holidays that we had planned, or other events, have fitted so neatly into my medical schedule that I'm almost beginning to believe in a supreme being and the fact that she might be smiling upon me.

Wednesday, 6 July 2011

Garden success

We have several clematis plants in our pocket-handkerchief-sized garden and the most spectacular of them is currently flowering in abundance - masses of deep red blooms. The garden is probably looking its best just at the moment and last night's rain didn't come a moment too soon.

We did originally plant the garden with specific plants in specific places but since then, as some of them haved failed, I have engaged in a rather brutal method of garden development. I collect seeds, from my own and others' gardens throughout the summer and autum, and pop them into a large envelope, shake it up and sprinkle the contents over the available flower beds.

When I say "available" it's not what I really mean because having such a small amount of space means that there is no available space once summer is here and everything's vying for a position. What happens of course is that those seeds which germinate and can win the struggle for light, air and water appear, and those that can't die. So the majority of the plants in the garden are happy there because they've had to fight that battle and win. It's brutal but it sure does work.

Monday, 4 July 2011

Butterflies, hay and warm breezes

I know, you've looked a couple of times and there's been no new posting. Sorry. We've been away again - this time down to Sussex where we wandered through meadows full of butterflies, crickets and mini oak trees in warm sunshine while from the field next door wafted the sweet scent of freshly turned hay. I decided not to fire up my smart phone - no, dear readers, not even to engage with you.

We're now in the week of The Appointment and I feel myself begin to get nervous. Goodness knows why I should feel this way. All it will amount to is a chat with the surgeon - and who knows, it may be that he's changed his mind. So there's absolutely no point in getting het up about the op yet. Despite that I guess I am. I guess I'm human.

My only real worry is that the op might cause damage which currently I don't have. At the moment I can laugh, sing, run about, turn cartwheels if I want (although, unlike my mother, I have never turned a cartwheel!), I'm in no pain and feel as well as I possibly can at my age with my lifestyle. Am I willing to swop all that for an increased life-span? That's the bottom line. Of course I am, but that doesn't stop me thinking about my options.