Tuesday, 28 September 2010

Back to normal, whatever that is

When we got back after a long weekend away, there were getting on for 300 emails... not that I am quite so popular, but we have a very busy Freecycle group around here! Sadly one of them was telling me that a job I'd applied for and felt I had a good chance of had been put on hold as the company is being taken over - a shame but not exactly a surprise. Also had a cryptic message from a friend from way back saying that she needed to talk to me urgently - the sort of message that you know means that someone has died. Indeed this was the case - my friend was trying to find a contact number for a mutual friend who's ex-wife had died, apparently after being ill for some time. They had been divorced for over thirty years, and weren't in touch, so nobody knew how to get hold of him and people were getting desperate lest he heard before he was told, if you see what I mean. I was able to supply a number, so hopefully the chain of communication has been completed and the sad news shared. These things always have some effect, even after thirty years, and the loss of someone who used to be a love is painful at any time. I didn't know her, I met her only once, but she was no great age and I am sad for her husband and children. I know that my friend (her ex-husband) will be sad, so D, I am thinking of you now.

My dear husband had a traumatic evening and morning - he's been doing some work for a friend of ours who has kindly offered him some stuff to do while I am between engagements... it was all right when it was working on a building site, but then serious stress developed when he was asked to go to Guernsey to do some research... this was discussed a week or two ago, and we decided that we would both go and share the work, for the cost of my flights we could at least have a change of scenery... Then the need became very pressing, it has to be done this week and by the way the flight was booked for 9.50 Tuesday morning! So after a frantic evening working out what he needed to do and where he needed to do it, I dropped him at Southampton Airport about 8.30 this morning. He seems to have got there ok, despite his horror of going in aircraft that he can't drive himself! Sadly I couldn't go, as I have hospital appointments scheduled this week.

In the meantime I am looking at a huge pile of laundry, another huge pile of salty damp foul weather gear and last night's washing up - think I will have a bath and forget about it all for now.

Tomorrow's entertainment is the regular appointment with the oncologist. This is the precursor to my final chemo session in a fortnight, so hopefully I will come away with a better idea of the plan for the next couple of months. The nurses at the chemo clinic say that they usually expect to schedule surgery between 3 and 6 weeks after the final chemo dose, so that the chemo has time to do its stuff and there isn't an interval big enough for the tumour to start growing again before the big tall bloke (sorry, the consultant surgeon) cuts it out. I have finally sorted out with the insurance company to continue my medical insurance, so at least I can be flexible about dates and be in a private room when he cuts me up, which will take one layer of stress away. I think it's worth paying the insurance premiums for a few months just in case there is any further stress, and also it will pay for the next round of scans to be done privately if need be. It seems very strange to be talking about the surgery, it makes it feel as though the thing is starting to draw to a close. In some ways it is, but it will still be about two months before they take a knife to me, and another chemo session to wreck me in the meantime.

Bright news - at least some of the job leads are starting to generate interviews, so that's a positive sign! Fingers crossed.

Monday, 27 September 2010

Big gaps

Sorry folks, it's been a few days since the last update which has worried a few people... nothing untoward going on, honest. I am really touched by how many people have emailed or phoned me to see why I have disappeared! Thank you all for your support and interest, it means more than you can know.

Gushing soppy bit over...

Had a chemo session on Wednesday last week. All very calm, took a while to get going but once we started all was smooth. It was a bit dull to know that the stuff going in would be removing my taste-buds again, as food is a great pleasure in my life, but in the grand scheme of things I can live without the joy of spice for another couple of weeks, I guess. However the hair on the head is still there, although the lashes and brows are now pretty much gone. Odd how it affects different areas of hair differently.

Thursday (the day after the chemo) we decided to go sailing... yes, I know, but you can't let these things get in the way, can you? We had agreed to go to the Isle of Wight for an event, a little race thingy, a friend had asked us to crew for him but then had plenty of crew so we decided we'd go anyway and entered ourselves. This meant the usual big panic Thursday morning to get everything ship-shape and stowed before we missed the tide. As always, we had a pretty disappointing journey out Thursday - the wind around Bognor Regis seems to have a talent for finding the pointy end of the boat - and despite the engine manfully doing its stuff we were still dropping the anchor at 3.30am in a local harbour (we always seem to get to this particular place at 3am!). Crew who were supposed to be joining us Friday morning discovered at the last minute that they could not, so we made an early start and headed west.

Sunday, 19 September 2010

Here today...

but will it be gone tomorrow?
The latest news is that I appear to be growing hair!!!!! There seems to be a very fine, very fair fuzz on the top of my head! Also there seems to be new growth in my eyebrows and eyelashes, which are coming through dark so are quite conspicuous as there is very little left of what was there before.
I will try not to get too excited - it may just be a passing thing, it may all disappear when the next treatment arrives on Wednesday. The eyebrows and lashes were pretty much ok until the first dose of the docetaxel (the last chemo session) and then they dropped out almost immediately - it may be that the same will happen again this time.

It feels like just a little light at the end of the tunnel, though.

Saturday, 18 September 2010

Calm before the storm...

It's the equinox in a few days and the wind is starting to pick up even now - and it's got jolly cold over the last few days - those of us with no hair know this very well! I am mostly over the side-effects of the last round of chemo, just in time to get them all back again on Wednesday.
I've been musing a lot over the last few days on just how quickly the last few months seem to have passed. When they told me that I have cancer I couldn't think beyond the next five minutes - talk of nearly five months of treatment didn't really form a coherent image in my mind. When I did start to think about it, it seemed like half a lifetime - nearly half a year anyway. And now I am more than half way through, two thirds in fact. In a month I will have had the last chemotherapy treatment of this regime - hopefully the last one ever, assuming that the drugs have done their work properly. If all is well, there will be one operation and then it will be done and dusted, and I will be a "cancer survivor" instead of a "cancer patient" - a subtle distinction but an important one. Then I will be left to get on with the rest of my life... But will that be all there is to it? Even if the cancer is all gone, I will be going back to the hospital for check-ups every few months for at least five years. I will also have to live with the knowledge that it might recur - or that whatever genetic weakness causes breast cells to go bad is in my underlying structure, and the switch might get thrown again. It's not unheard of for breast cancer survivors to experience a second primary cancer elsewhere, often the other breast. That knowledge will be with me for the rest of my life, and it's quite an uncomfortable thought.
But what if it hasn't all gone according to plan? The lump is undeniably reduced - the oncologist said he couldn't accurately measure it last time, and three weeks later I can barely find it myself... but that doesn't mean that it will all be gone by the end of the treatment. He can't find any evidence of anything in the local lymph nodes, but that doesn't mean that they won't find anything when they cut me up - what happens then? I guess it will mean more chemo, maybe radiotherapy, and still there will be a good chance of a good outcome, but again it's an uncomfortable thought. The medics are all very upbeat, still confident that it will all be fine, but there are no guarantees, and it's a bit like the fear that Santa might not actually bring the presents after all, even though I have been good and taken my medicine as I should. It's quite depressing - but I half feel that I am being unreasonable worrying about such things. Is this showing disloyalty, or lack of faith in my care team, doubting that they have fixed everything? I know that most of the time a single regime of chemo plus surgery is enough... but not always. And that little bit of doubt will probably never go away.

It's odd to think that this has been a summer of real upheavals - cancer, redundancy - but life has never seemed so bright and so precious... I am not sure which is the cause and which is the effect. Am I grasping life and making the most of it because I am painfully aware that life is a commodity with a finite supply? Or is it that I have become aware of the wonderful life that I have, the great people and the support that they are giving me, which is showing that life is still peachy in spite of the challenges that I am facing right now? I don't know for sure, a bit of both I guess. One thing is for sure, as the equinox approaches and heralds not only strong winds but also the start of the settling down into the approaching winter, I will be making the most of the autumn of this year, taking the fruits of the summer and putting them into storage for the winter (in the form of jam, chutney and sloe gin!). It may be the autumn of the year but I refuse to let it feel like the autumn of my life, so I am planning for the winter and for the spring beyond.

Carpe diem!

Monday, 13 September 2010

Not a whole heap to report.

Feeling a bit tired, but mostly ok... have been and signed on, taking my discharge notes so I can prove that I was really in hospital rather than spending my Jobseekers (which I haven't had yet) on sun, sea and sangria... It's a good thing that I have some dosh in the bank as there has been nothing at all in the way of benefit and I've now been out of work two weeks.

On the matter of bananas... I dare say may people round these parts do believe that Lancashire is a foreign land! And while I have seen bananas (or at least plantains) growing in Milton Keynes shopping centre, I think that Westhoughton is a shade on the cool side... although I recall all sorts of exotica growing around the Chinese gardens at Rivington... you never know...

Friday, 10 September 2010

Freedom

At last! The blood results are back, the white cell count is fine and I can go - just as soon as the antibiotics arrive from the pharmacy! So all is packed up and I will be down the corridor as soon as I get the pills. No idea if we're going sailing or not, and in truth all I really want to do is sleep in my own bed tonight.

Light approaching...

I survived a night... it wasn't great, it must be said, but it could have been much worse. At least I am not on 2-hourly obs any more.
Eventually got my antibiotics via the PICC line (hurrah!) at just after 11pm. Everyone else was gently snoring by then. Decided that I wasn't that fascinated by John le Carre and needed to retire myself. The cacophany of the electrically pumped inflated mattresses, the snoring and the mysterious buzzing noise that I never did identify eventually all faded away - but as always as soon as I felt settled someone would cough, or splutter or something, and the nurses would come in to check - sometimes dragging the trolley with the monitors behind them. By 6.30 am when my next obs were taken I was pretty worn out but it was never going to be a great rest in a room with five other people, most of whom were sleeping on their backs propped up at 45degrees to the horizontal - and if there is a position when snoring is likely, then that is it.
My blood sample (from the PICC again, another hurrah!) went off about 7.30am, hopefully they will be back soon with a suitable white cell count and then I am out of here... I have been written up for oral antibiotics for the next three days so life can go back to some semblance of normality.

By 8am everyone was awake and enjoying their porridge... the truly awful coffee had been served and the demands for commodes had begun. By 9am I was sat in the corridor with the mobile phone bemoaning the foul atmosphere which now prevailed on the ward - the background aroma of wet incontinence pads had been completely lost in the miasma of different pooh smells. As far as I could tell, everyone in this bay (apart from me) was given a laxative yesterday evening - three out of the five can't (or won't) go to the bathroom, and trust me, none of them have any problem with effective evacuation of their digestive systems. I jolly well hope my immune system is up to par, because if it isn't I am wondering how long you can safely sit in somewhere that smells like a sewer much of the time.
The nice man from the hospital estates team arrived about 9.30 to "check my pc" - I now have a sticker valid for a year that says I can plug it into the power here, so hurrah for that!
There are curtains around the bed at the end, I didn't see a commode arrive but I am starting to detect that delightful aroma again... I think it's time for a shower!

Thursday, 9 September 2010

Paradise lost (part 2)

Visiting time seems to have tailed off... dear husband came in to console me but has escaped now, with firm instructions to make a passage plan for tomorrow...
There was a moment of horror when the lady in the far corner suddenly started spraying perfume around - I thought this odd and started to cough as the very sweet aroma met me... I didn't connect the activity with the closing of the curtains around the bed in the corner, nor the arrival of a Health Care Assistant pushing a commode... The connection made itself obvious fairly quickly and the atmosphere became just too much for me, so we made our excuses and legged it to the corridor for half an hour.

The rest of the ladies have now decided to forcibly bring me into the community - well, when I say the rest I mean that there are two who are even slightly mobile and able to string a sentence together without shouting, who seem to constitute the community. I think it is still going to be a long night...

Paradise lost

So - the nurse appeared with the antibiotics and announced that no, she couldn't use the PICC line as there were some bugs in it. So it went into the cannula. And just to cheer me up, they were going to move me to the haematology ward upstairs... So I packed up my gear and waited and soon enough the porter arrived.
I got up to the ward to discover that I don't need to be in isolation any more - and the haematology ward is full of people with dodgy veins and things... I am the youngest here by a factor of two decades. Conversation here takes place at double the normal volume and centres on the activities of physiotherapists, occupational therapists and social services home care services. Visiting time is limited, and there is a huge argument going on between a nurse who is trying to persuade a grumpy lady to press her call bell when she wants the loo rather than just peeing in the pad she's wearing...

The nice doctor tells me that the PICC line is fine, and they will be using it henceforth. We agreed that the cannula will stay in until the PICC has been flushed and is proven to be working, as I am running out of places where they can put a new line in... but once it is all checked then the cannula can come out so at least I have a chance of sleep tonight.
He also said that while my immune system appears to be fine today, they are concerned that it may drop off overnight and they want to monitor it for a little longer. Tomorrow morning, if my white cell count is ok they will discharge me, if not they will isolate me again... So I am in here for another night either way but hopefully my ticket out will be signed first thing. No chance of making the late morning tide, but we might see how we feel about going late evening and arriving early morning... or maybe not bother this weekend.

The lady opposite is now having a blanket bath as her pad was so soaked the bed had to be changed. Although she is saying that she's more comfortable, she is still arguing with the nurse! She can't be bothered with calling the nurse when she wants to pee because she won't have time, and she can't be fussed with calling the nurse after she has peed... and won't accept that she will get sore if she sits in a urine-soaked pad all day. The nurse has a reserve of patience that I think deserves a medal!

It seems that I am not supposed to connect the laptop to anything without having it "checked out by Medical electrics people" - I guess that means PAT tested. Not sure if I dare just plug it in and see what happens... so there may be no further updates for a while if I can't charge the battery... I will sneak the magic dongle out of my bag and try to get connected...

ps - now the nurse has gone there is a long discussion between the grumpy lady and her visitor about the lack of flavour of the latest bag of bananas...
"Where did they come from?"
"The Co-op"
"What does this mean?" (points at logo on bag)
"They are Fair Trade, I am afraid"
"Oh - I suppose that means they were grown somewhere foreign!"

Another day in paradise

Yep, still here.
They actually did my 2-hourly observations every two hours all the way through the night - every time I got settled they came back and woke me up, so I was pretty wretched by 7am when the day began once more. Yet another hole in me to take more blood... the damage to my veins the last day or so is extensive and some of the bruising is quite tender - hopefully it will all recover in a day or two.
It seems that they are now happy that the PICC line is ok, and they will start using it for the next antibiotics. This is a good thing, hopefully they will take the cannula out of the right hand soon - probably not until they have actually used the PICC in earnest at least once, as I am running out of places they can stick needles and at least this one works.
The coffee here is mediocre instant stuff - I have now noticed how mediocre it is, which means that my sense of taste is returning. The soup offered today at lunch was orange, rather than yellow, but it was described as "Carrot" which is indeed what it tasted of - lovely & buttery...
Next antibiotics here, more later...

Wednesday, 8 September 2010

Menu choices

Hospital food has improved dramatically over the years, and the fish in mushroom sauce at lunchtime was awesome. The chicken chasseur which has just arrived looks good too, and there is swede, which I don't get at home as himself doesn't like it.
However, it's fair to say that nurses and waiters have different skillsets...

Nurse: Would you like some soup with your meal?
Patient: That might be nice - what is it?
Nurse: It's yellow....

A change of scenery - part 2

An evening in the AMU isn't great fun, lovely though the team there is... after being booked in, getting more bloods taken (this time from the PICC line so they could check that wasn't the source of infection) and various sets of observations, the promised antibiotics finally arrived about 11pm. Dear husband eventually went home, starving and shattered, protesting that he would stay if I needed him, but he really needed his bed and there was no point in both of us being trapped... I managed to blag a sandwich about midnight but was still feeling pretty grim - 6 hours in hospital with no pain relief at all was a bit wearing. Eventually a nurse came to do my regular obs and I bleated about the pain, and some pills appeared very quickly after that. Just after 1am they put a litre of saline up to drip into my arm and as the paracetamol started to work I finally fell asleep.

It seems that this morning my white cell count is low but not scarily so, and there might be sign of an infection, so I am still stuck here on IV antibiotics. They now don't want to use or flush the PICC line until they get the results of the last samples back. There is talk of moving me to the haematology ward, but they are playing musical beds for a while so nobody knows when that will happen.

The doctor arrived a little while ago to insert another cannula, as the one they put in yesterday is not happy. Although it's working ok, it's been leaking badly into the surrounding tissue, and does give me some pain when the flow rate is a bit high, so it was decided to fit another one. She spotted a nice fat vein on the back of my left hand and wrapped her very funky multi-coloured tourniquet around my wrist. I looked away while she stuck the thing in, bit my lip to mask the desire to swear as she stabbed me... wasn't to encouraged when she said "Oh dear!" under her breath. The thing had gone in about half way then stopped, so that had to come out and we had to start again. Then she went for the inside of my right elbow, always a good bet - exactly the same thing again, half way in then stopped. At this point she decided she had done as much as she can, and with profuse apologies left, taking her multi-coloured tourniquet with her. I thought I was safe for a while, but about two minutes later another doctor appeared with a tray... I was starting to get a bit hacked off with this, having a PICC they won't use, a cannula that hurts me and two new holes dug in me, the human pincushion role was not such fun. However, this guy didn't take any gip from the vein in the back of my right hand and the thing went in with no further protest.

It's now 3pm and there should be more painkillers soon...

A change of scenery

Tuesday wasn't the greatest day.
Pottered around in the morning, took some ibuprofen to try and dull the pain - very achey. Decided that I had to do something more constructive than merely vacuuming, so bagged up the smelly sleeping bags and took them to the launderette. Bunged in the washing and set off to do a couple of other little errands, including dropping my books at the library and get something new to read. Walking around the library was quite hard work, so ended up just grabbing some random pulp crime and a John le Carre and retreating to the car.
By the time I got back to the launderette, book in hand, I was feeling pretty rough, and decided that it was time for more drugs. I figured that if I went home I would never get out again, so went to the shop next door to the launderette to get more ibuprofen and a bottle of lucozade. As the dryer ran I started to feel very bad indeed, and by the time the washing was dry enough to take out I was struggling to get to the car.
By the time I had dragged myself up the stairs I had given up caring whether I lived or died - every single part of me ached. I crawled into bed. Dear husband came and stroked my head, and commented that I was quite hot - a quick wave of the thermometer revealed a temp of 37.6 which is a bit higher than normal and a full degree higher than my normal temp which sits at about 36.5 most of the time. An hour later this had climbed to 38.1 and the thermometer was bleeping in a very insistent way - that's a fever by any standards, so it was time to call for help. I rang the chemo unit and explained what was going on, and they said to head for A&E.
There's a protocol for dealing with people like me. The big fear is neutropenic sepsis - that is when someone with a compromised immune system (like a chemo patient) develops an infection which they can't fight. This can be lethal quite quickly, so under these circumstances the drill is to take the history, get some bloods to the lab and start IV antibiotics immediately. The ideal is for that treatment to start within an hour. The trouble is that it's not a common problem, so it's not a well-known protocol. I was called out of the A&E waiting room in five minutes and parked in an office - this was good as it got me away from all the sick people in the queue and their germs. What was less good was leaving me in that office for the next hour and a half. It was half an hour before the triage nurse assessed me, then he came back half an hour later to say they needed bloods, another hour later someone came to take me to a cubicle and then another half hour to get the bloods taken. I hit A&E about 5.45pm and it took three hours to get as far as taking blood. At this point a very nice doctor came and fitted a cannula so they could give me the antibiotics, and she explained the plan her boss had outlined - ie take bloods, give IV antibiotics. This wasn't exactly a surprise, but at least I knew they were keeping me in and I could let himself go home soon. After a stop at X-Ray to take a nice pic of my chest (but not for page 3!) we made it to the Acute Medical Unit about 9pm where there was a lovely isolation room awaiting me.
A doctor carrying a tray of something has just arrived - more later when she has finished...

Tuesday, 7 September 2010

Dull dull dull

Yep, everything is dull. Nothing tastes of anything which is very sad, but I guess if that's my worst complaint I have got off lightly. Appetite is pretty low, although I can eat I am suffering rather badly from heartburn.
I constantly feel as though I have just had a dose of flu - achey and tired. I managed to go all of yesterday without needing a nap which was good, although by 9pm I was pretty wasted. I've been taking paracetemol every six hours, and I got involved in cooking about 6 so didn't take any until nearly 7.30 and still felt reasonable (in comparison). I didn't take anything at midnight and boy did I feel ropey this morning. I decided to try ibuprofen for a change and they seem to have acted more quickly than the paracetamol - or perhaps I am just feeling better, who knows?
This is day 7 of the chemo cycle, which means that today's GCS-F (the thing to boost my immune system) will be number 6 - that starts to affect me after about day 7 so we shall see what that adds to the mix tomorrow.
It's just been suggested that we could go sailing this weekend - there's an event on that would be a reasonable daysail (depending on tides of course) to get there and would probably be quite fun, as long as I am feeling up to it. Might be able to persuade some crew along I guess but we haven't had great success in that in the past - people promising to come then can't make it for one reason or another. Some friends of ours are likely to be sailing in the area too, since their sunshine holiday was cancelled due to the demise of a travel company they have decided to make use of the asset they have (ie a boat) and enjoy the south coast of England instead of some foreign shore. I think we will try and give it a go, if nothing as a protest about cancer getting in the way of life!

Saturday, 4 September 2010

Bleurgh...

Don't feel so good today.
Achy as anything, not really anything specific, just generally under the weather and shattered. I was warned about this, so am living on paracetamol to keep it at bay at the moment, but remembering to take the stuff before I start to feel bad again is hard. By the time I realise I am overdue for some more I feel rotten...
The real pain at the moment is the total absence of taste... and not just the pink wig this time! I have a very sensitive sense of smell at the moment - the hot roast chicken in the supermarket was calling to me in no uncertain terms - but anything I eat tastes of - well, nothing at all. I first really noticed it yesterday, my ginger beer wasn't very gingery - then the wine I tasted was tasteless. The beer had a vague hoppy after taste, but in truth they all tasted the same. The fresh tuna steak on the barbecue was vaguely fishy - nice but not very flavoursome - and the sausages and burgers tasted exactly the same as everything else. Life is going to be very dull if everything tastes of nothing for the next few weeks. I guess it's a price worth paying as it's only for the next couple of months, but it's one of life's pleasures removed. Hey ho...

One of the guys we went out with yesterday brought his partner with him, I haven't met her before. She has ongoing bladder cancer, has had this for a number of years, and is allergic to the chemotherapy. Consequently she has surgery every few months to keep it in check. The last surgery they caught something they shouldn't have and she was back in hospital with acute peritonitis 12 hours after discharge, leading to a stay in intensive care. And I complain that I have a tough time - I have to be thankful that I am as well as I am and that things are as easy as they have been so far. It could all be so much worse.

Wednesday, 1 September 2010

Back home

Back from the hospital... Interesting. I was warned that some people get an allergic reaction to docetaxel... about two minutes into the infusion I started to feel very tight across the chest. Worse than heartburn, not frightening but noticeable, and the nurses had told me that I MUST tell them if I experienced anything out of the ordinary.
They stopped the infusion and tested my blood pressure, and decided to give me some more steroids (hydrocortizone) and an antihistamine (piriton) to dampen the reactions. They also called the doctor across to look at me - he listened to my breathing and pronounced that all seemed well. The drugs should settle it all down within half an hour, then the infusion could be restarted.
True to their words, the drugs did indeed settle everything down, and once the infusion started (albeit at a much slower rate) all was well. Dearest and best beloved hubby arriving with a tuna sandwich from the WRVS cafe was immensely helpful too!

There was a lady arriving just as I was getting settled who had come in to have a PICC line fitted, she seemed very nervous. I wished I could say to her that it was the best decision I have made in this process - it hurt like stink for about ten seconds and then everything was fine. Although I have to look after it (which means going to the surgery to get it flushed once a week) it has reduced the amount of damage being done to my veins by a huge amount. I see the effects of repeated cannula insertion every time I go there - massive bruises, wrecked veins, all sorts, and I am glad that I was persuaded to get over the "yuk" factor. The lady who I saw yesterday went for it in the end, and seemed happy enough when she left, I hope that it works out well for her. Anyone reading this who is ever asked this question, take it from me - the PICC line is the way to go!

Different strokes?

Off to the hospital now for chemo cycle number 4 - Docetaxel (Taxotere) today. So a new set of side-effects to worry about... what fun!

Signed on as unemployed yesterday... first time in over thirty years...