Saturday, 31 July 2010

Saturday evening

All quiet... The back pain is receding, which is nice - I am now convinced that it's the result of the G-CSF (which apparently stands for Granulocyte - Colony Stimulating Factor), which is to build my immune system... the pain was just the same as last time but not so severe, and a quick bash with paracetemol laid it to rest quickly this time. Keeping the digestive system flowing nicely has been a challenge for a few days (I know, too much information!) but lots of lovely vegetables are helping - it's my excuse to drink fresh fruit juice and have fruit for pudding at every meal!
The PICC line in my arm seems to be settled. Mistake this time was that the sticky label they attach when it's redressed is laid right over the point where it disappears into my flesh, so I can't actually see what's going on - think it's bled a little and there's a crusty clot there which is itching madly, but it's not too bad and will survive until Wednesday when it's redressed again...

My beloved has spent the day fighting with a somewhat recalcitrant motorcycle which is refusing to play. It's having money and attention lavished on it in fine style, and is being astonishingly unco-operative - ungrateful thing! He's now lying in the bath with a book and a G&T, hopefully destressing a little.

I've had a really exciting day tidying the house, which was long overdue... It's still a tip, but at least I can honestly say that it's a work-in-progress at present now! A big pile of stuff to the charity shop, a few freecycle ads and a couple of books onto ebay - can't imagine anyone will buy them as they are out-of-date textbooks, but there are a few copies being advertised and getting bids, and mine are cheaper... I would freecycle or charity shop them but they are so obscure that they would never go - maybe ebay will find the odd weirdo who actually wants them before I throw them in the recycling. It hurts to recycle a book I paid £65 for!!!

Good news - the nice secretary at the hospital faxed the reports to my insurance company, and they have said that they will approve my claim HURRAH!!! It's not a fortune, but it does make life a little less fraught, and it means that I can afford to pay the bills until I get a job.

It's very strange - someone said to me recently that I appear to be coping with everything amazingly well. I thought it was an odd thing to say, then I remembered how shattered I was when the consultant said "I am sorry, it is cancer". I didn't know what to to, say or think, and I couldn't imagine how I was going to cope. But I can only keep up being shattered for so long, and then life gets in the way. It would be almost a luxury to be able to sit and worry about having cancer - but just because I have cancer the house doesn't stop needing to be tidied, the food still needs to be bought and cooked, and I still have to hunt for a job. The grandkids still want to come down and stay, and the fact that I have hospital appointments will just have to be worked around... life goes on, cancer or no cancer... The panic attacks and really dark moments are rarer than they were - I don't have time to be stressed about it. Does that sound odd? It does to me... Time for a chilled Pinot Grigio I think. Have a happy Saturday evening.

Thursday, 29 July 2010

A quiet week

It's all been boringly stable this week.
There was a bit of work stuff at the end of last week - but that's all gone quiet. Only another month of pay left then I will be a jobseeker, which will be dull.
The weekend was good - went sailing - had formal dinner party on an exposed sandbank, arousing much amusement from passing boats as we raised glasses of champagne and caroused mightily. It has to be said that even in July the south coast of England can be a cold place, and while the chaps were all cosy in their dinner suits (and thermals!) us girls were a bit parky in the evening dresses... Apart from one smarty pants who wore her fur coat!

I got a bit disorganised with the drugs and stuff over the weekend. I survive by having a rigid timetable and a chart to check things off - when the timetable is managed by the tides then things can easily get out of sync. Getting back on track now though.

One of the real pains is paperwork. I love the NHS, but it's a big organisation and things can be really slow to happen sometimes. I have an insurance policy which includes critical illness cover. If this will pay out then it will make a big difference next month when I am out of work - the difference between paying the bills and not. I sent in the claim in May when I was first diagnosed - and seven weeks later the specialist's report still hasn't arrived at the insurance company. Every time I go near the hospital my notes are booked out, and the request for the report and the associated paperwork (which are in the file) leave the medical secretary who has been trying to get this done, and go off on a magical mystery tour of the hospital. If the notes aren't there, then the specialist can't produce the report, or sign it when it's been typed up. I have been promised that it was all posted first class on Monday, but it hasn't appeared at the insurance company yet. There has to be a better way for things like this to be dealt with... a paper file in a trolley somewhere is the key to everything, and whatever they are entering into the computer every time I go there seems to be incidental.
This is adding somewhat to my stress levels, as I can't make any real plans until I know what is going on... and if the policy doesn't pay out, I won't be able to keep up the premiums when I am on Jobseeker's allowance! It's hard, though, to rant and rave about this when the people who seem to be taking all the time are a) just doing the best that they can within the existing system and b) likely to be cutting me up quite soon.

Starting to feel tired all the time - can't sleep at night, can't stay awake during the day. Boring....

Wednesday, 21 July 2010

That was better

Well - I woke up with a headache about 5 so got some paracetemol. Couldn't get back to sleep, after tossing and turning for half an hour I got up and decided to go for a walk. I felt scarily well so decided to make the most of it and headed off to the shop to get croissants and pain au chocolat... I really felt like I had been for a walk by the time I got back (about 6.15), but still not feeling sick and the headache mostly gone... Three cheers for the Aprepitant pills which have made a real difference - today has been a reasonable day and I thought it would be a write off!
To add to the positive feeling, my customer has some more work for me - while this is already paid for it's encouraging that they still want to develop the system, so there is hope of some work for the future...
Off to bed while I still feel good :)

Tuesday, 20 July 2010

And it begins again

Second chemo session today.
New anti-sick drugs - take one an hour before the treatment. Then more anti-sick drugs into the vein - then half an hour before the real drugs. Then another carrier bag full of stuff to take home...
It's late now, and I have eaten, I didn't feel like it but once I started eating I found I was quite hungry. Feeling headachey and a bit sick and suffering recurrent hot flushes (although that could be the weather!) but nothing like as grotty as I was this time after the last treatment.

Going to bed to see how I feel in the morning.

Monday, 19 July 2010

Getting ready again...

Yesterday was quite good fun - over to the in-laws for sunday lunch, my brother-in-law is a magician when it comes to cooking beef - he abandons it over an open fire and it comes out gorgeous every time - I wish I knew how he did it, but then I would have no excuse for sitting watching him cook...
I don't know who's idea it was to play tennis, but I rather wish I hadn't. It reminded me of how fit I am not, and also running around in the sun when you're a) full of sunday dinner b) full of pinot grigio and c) bald, is not really the best idea. Was slightly worse for wear when we got home, and this lead to many in-depth intellectual discussions of whether it is actually possible to have either too much sunshine, too much roast beef or too much pinot grigio. I know that the answer to all of those is technically "yes" but it does seem wrong for a great afternoon to be "too much". Hey ho... The comedy surfaced about 1am when I really couldn't sleep... not the ill-effects of any of the fine food & wine, more that about half of my hair has fallen out but the other half is still hanging in there and growing well - so I have ever-extending stubble across my head. This means that not only do I suffer the velcro effect when trying to slide across the pillow, but at certain angles it feels as though I am trying to sleep with my head in a bramble patch. I dare say the macho men who regularly shave there heads (and I do seem to count quite a few amongst my friends!) reading this will laugh at my wimpishness but I really couldn't bear it. So my poor dear husband was up at 1am shaving my head for me so I could get some sleep - he really is a hero to put up with such madness!

I went off to the hospital for my blood test this afternoon. They took the blood ok, the line is still clear and working well, which is good news. I asked about the anti-clotting injections - these have been making me quite nervous, with the injection site bruising like mad and sometimes bleeding for 12 hours afterwards. The nurse looking after me bleeped a doctor to come and talk to me and also took extra blood - this was sent straight up to the lab for a platelet count, and the messenger was told to wait for the results. Fifteen minutes later I had the results of the blood test and a doctor to talk to - what more could I want? It seems that the dose I am on is appropriate, and this sort of bleeding is not unusual. My platelet count is very good, so the likelihood of uncontrollable bleeding seems low, and she recommended that I stick with it for another cycle and see how it goes. So I will do that and keep an eye on things. I am already a mass of bruises, going sailing at the weekend will probably generate more... but life is like that. My poor old tum (the injections go into the fat around my waist)(good thing there is so much of it) will be even more battered over the next few days - stuffing the anti-clotting stuff in as well as the stuff to build my white cell count, two injections a day - very dull indeed. Nearly as dreadful as what my ex (who has insulin-dependent diabetes) has to do every day of his life... It's amazing how every time I start to feel sorry for myself I manage to think of or see something that reminds me that life really isn't so tough for me. It's a bummer when I get really worked up for a bout of self-pity and it's snatched away like that...

Saturday, 17 July 2010

Where did that week go?

It seems astonishing that I have been bald for a whole week! Not quite sure where the whole week went to.

I seem to have got the customer's service working again, which is a good thing - for them at least - although I don't suppose it will improve my chances of having a job after the end of August. It may be that the customer will decide they still need me to look after it - that might be a few days work each month, we shall see.

I am a bit concerned about the anti-clotting drugs that they have given me. I talked about the injections leaving bruises at the site - the site of Friday's injection was still bleeding twelve hours later, which is a bit of a worry. Half of me wants to just stop the injections straight away, the other half (the sensible half) is saying that I should be raising this with the hospital when I see them Monday morning.

Wish I wasn't so sleepy all the time, and the morning headaches are becoming a bit of a bind. Hey ho...

Wednesday, 14 July 2010

Another cautiously optimistic day

Well, that was a turn up for the books...
Consultant was running late. Very late... an hour late. But that's not a bad thing, I like to think that he spends as much time with people as they need, and I don't mind waiting for that.
We eventually got in there, and talked a bit about side-effects and so on. The clot-busting drug I stick in myself hurts and leaves bruises - but he's adamant that he doesn't want to stop it as there is a risk of thrombosis with the chemo. As dear husband says, a bit of a sting and some bruises is better than the alternative, which would be the likelihood that the PICC line would get blocked again and have to come out. The PICC line means that I don't have a cannula every treatment, and a needle stuck in every time I need blood taken - so I will do whatever I need to do to keep that line in and working. The stuff to improve the white-cell count might be implicated in the crippling pain I experienced on Thursday, but so might dehydration which would affect my kidneys badly. The anti-sick pills didn't seem to have done the trick, so they would add something else to try and improve that for the next cycle.

So then he wanted to look at the lump. It's somehow worrying when a bloke gazes at your boobs while brandishing a pair of calipers... but he grabbed the offending article, tightened the thing up and announced that it was much reduced! After measuring in different directions he pronounced that it was down from about 4cm to about 2cm - so had reduced to half its previous size!
That has to be good news by any standards. He had seemed confident that it would be shrinking last time I had seen him, but I hadn't expected anything like this. For some reason - superstition, perhaps? I hadn't actually felt the lump for a few days, as if I might interfere with things somehow, so I had not realised it was changing - but when I did I could not deny that it is now much smaller than it was.

He didn't seem terribly enthused by suggestions that things would or even could be influenced by anything as prosaic as diet - just a balanced diet please. No objection to vitamin supplements though, although I should lose the extra Vit C if I am taking a multivitamin as well. It seems that part of the effect of the chemo is to release free radicals into the blood which attack the cancer cells, and high doses of Vit C will "gobble up" the free radicals before they get to do what they are suppoesd to do. He suggested that I leave the Vit C until after the chemo is finished. I don't see any reason not to remove dairy from my diet, so I will continue on that route, and try and get rid of pre-processed food where I can. We don't eat much in the way of processed stuff, although I have to admit to ready-made pasta sauces sometimes... but there are plenty of tomatoes out there right now.

As we were driving home I remarked that I had forgotten to ask (duh) about the rumour of an affected lymph node. The surgeon hadn't mentioned this, and it was only when one of the docs in the hospital mentioned it that I grabbed my notes and looked - it seems something on the MRI had looked like a dodgy looking lymph node. "Oh, he said that's gone" came the response from the driving seat. "WHAT?!?!?!"
As he'd walked back into his office after examining me, while I was dressing, the Great Man smiled and announced not only that the lump was half its previous size, but there was no sign of a problem in the lymph nodes and that he was very pleased indeed - but of course I didn't hear the second bit! It just goes to show that it's best to have a second set of ears listening at such times.

So all in all, that wasn't a bad meeting. I have been trying to keep positive, and accept what the care team tell me, which is that this is routine, everyday and treatable, and that in six months it will be largely over... but now I have hard evidence that things are not just being done, but they are working. In between the positive attitude, the Reiki, the prayers and healing rituals, and the kick-ass drugs, things are moving in the right direction.

It's raining hair...

Although most of my hair was removed on Friday I still have a field of stubbly bits, partly because it wasn't such a close shave, and partly because it's been happily growing since then... but it seems to be on its way now. I woke up with a fine sprinkling of 3mm hairs on the pillow, and when I run my hands over my scalp there is a fine rain of bits of hair. At least it's not coming out in 4inch long clumps, that would be very distressing.
Appointment to see the Oncology consultant this afternoon, might have to go onsite to sort the customer out tomorrow.

Tuesday, 13 July 2010

The monster awakes

Work woke up today... actually it woke up just as I was heading into hospital on Thursday but the Bilberry was flat and I didn't see the message until this morning. It's been agreed we will fix our customer's problem pending further contract negotiations...
Trouble is that in the meantime my access to the customer's network has been revoked and it will take some effort and time to get it reinstated. Hey ho.
The new injections that are to clear the clotting around the PICC line sting like a stingy thing as they go in and leave rather nasty bruises - two weeks of this and there will be no clear site left to stuff them into. I guess that being an anti-coagulant bruising shouldn't be a surprise to me... However, I note that they contain lactose, so will have to ask the Great Man if he can prescribe something else.
It's amazing how hard it is to avoid dairy products. A dramatic gesture of pouring away the milk was one thing - but the super-healthy no-added-sugar muesli from the supermarket contains a large percentage of skimmed milk powder - why? Anyway, there was a quick trip to our shiny new healthfood shop in town to buy a bag of their milk-free muesli and some houmous to replace the cheese on my lunchtime crackers.
I think what is left of my hair is starting to let go...

Monday, 12 July 2010

Sleepy

Sleepy sort of day. Walked back from town - needed some exercise after days of being cooped up in a small hospital room.
Various friends have been offering me advice about alternatives to some of the things the hospital give me...nothing too dramatic, herbal products to replace the chemical laxatives and so on. I have been reading a book which appears broadly sensible which advocates several lifestyle changes for those living with cancer. The primary change seems to be removing dairy products from the diet. It seems that the incidence of breast cancer in the far east is very low, even in the big towns - including Nagasaki and Hiroshima. The difference seems to be the use of dairy products which just don't feature at all. So I think I will cut out the small amount of dairy I do use - I have been having tea with milk recently, and cheese will be hard to give up, but there seems to be some basis for the recommendation.
Time for rest I think.

Sunday

Up early to rush to the sailing club to do the radio course I had booked ages ago and didn't think I could get to. All the blokes on the course had very short hair - so I didn't feel too out of place. I managed to pass the course, which is a Good Thing.
Then off to the hospital to collect my latest batch of goodies.
More antibiotics
Laxatives (you really wanted to know that didn't you!)
Fragmin - the clot-busting stuff which I have to stab myself with for the next fortnight...

Himself got stopped by the police driving to the sailing club... not sure whether they recognised the car (quite distinctive, strange scruffy elderly Citroen) and didn't recognise the skinhead driving it, thought that the combination of skinhead and said strange Citroen looked extremely unlikely, or were just bored and wanted to talk to someone... Anyway I think it best that he doesn't go walking around residential areas at night until his hair grows a bit, otherwise the neighbourhood watchers will have a fit!

Saturday morning

The nurses took the cannula out of my right arm first thing in the morning - the PICC line was working fine, so at least only one arm hampered now. I asked Sir to bring my laptop in for me so I could at least communicate with the world - he arrived with this around 11.30, just about the time the doctor arrived to be faced with two bald people - "So who's the patient then?" - the one in the nightie you fool!
She said that I could go home that afternoon, once the drugs they had ordered arrived from the pharmacy, which would be a couple of hours. Sir then ambled off to do his stuff, expecting to come and collect me mid afternoon, so I started to get the PC set up... ten minutes later the nurse came and said that the drugs would not be there until morning and actually I could go home straight away and pick them up tomorrow...
So I rang my brother, who just happened passing on the way to meet up with dear husband, and he and his family came and rescued me!

Oh yeah - just for a laugh - when I was talking to the doctor she said that the GCSF (which is to build the white cell count) that I had been injecting myself with can cause pain... she demonstrated by sweeping her hands across the small of the back and said "it can spread out and can be quite severe"... so like as not what I had been suffering was a side effect of yet another drug. So likely to be the same next time.... Wonderful. But, as people keep reminding me, it's better than the alternative!

Communication...

Thursday was not a good day for the good guys. I went to the hospital, where they decided that the line in my arm was probably infected, so I needed IV antibiotics. They took blood from the line, and added a cannula in the other arm to put drugs into... The pains kept on coming, and there was no clear picture of what was causing them, although my digestive system was a bit bunged up which wouldn't help. I was ok if I didn't move, but walk to the loo and I was in agony for half an hour. By lunchtime I was weeping and begging them to do something. Shortly after that the drugs arrived, and the antibiotics were accompanied by IV paracetemol - I have never heard of such a thing - but it did the job and the pain eased almost immediately. However it was obvious that I wasn't going home, so himself went off to do things and collect the list of things I might need. The PICC line was by this time completely blocked and unusable, so it seemed that it would have to come out, infection or not.
By the afternoon I had the best hotel suite in town - views across the bowling park to the sea, pretty boats sailing backwards and forwards (just to make me jealous!), three square meals supplied... what more could I want? Well, less people sticking needles in me and the lights in the car park off overnight to discourage the seagulls from using the place as a nightclub would have been an improvement but I am just being picky.
It's pretty awkward trying to find a comfortable position to sleep when you have something stuck in the inside of both elbows... after a total of two hours sleep I was not at my best on Friday morning. Nobody likes being stuck in hospital, and I didn't think I had much chance of making it to the pub to have my head shaved that evening... which would feel like letting people down.
The doc arrived and said she'd arranged a scan of the arm to check the PICC line. I then thought I would push my luck and see if I could be allowed out for a few hours to go and have my hair shaved.. she didn't think it likely but would come back and let me know.
Then I got into a massive argument over drugs which I had brought in with me and was supposed to take mid morning - which were in the ward fridge. Over about two hours this escalated as I asked for them repeatedly and got no response. Eventually I was told that I wasn't written up in their drugs register so I couldn't have it. I got a bit worked up at this point and demanded a doctor, to be told that they would be around in a couple of hours... Nurse stalked off and I sat down to weep.
The doctor arrived about ten minutes later - the nurse must have gone and demanded that she come and talk to me. She explained that actually my white cell count was high enough that I didn't need the stuff today. I couldn't understand why nobody had bothered to come and tell me this at 10.30am when I first asked, instead of ignoring me. Anyway, after a bit more weeping (I don't usually do weeping but I was pretty exhausted and still in pain) we agreed that people would remember to keep me informed a bit more.
So then I had to apologise to the nurse I had shouted at earlier, and she forgave me...

The doc came back and told me I could go out for the evening as long as I was back by 10 - Result! The scan had shown a few minor clots around the PICC line but no DVT and no real problem in the vein, so I would be prescribed some clot-clearing stuff. Specialist nurses came to investigate the PICC Line - they were adamant that it wasn't infected and that it was "just a bit of mechanical phlebitis" - easy for them to say! They put some stuff into it to try and clear it, but it didn't look good, so they went away to leave it to soak and see if things improved.
By this time the pain was much less and was being kept down with paracetemol tablets, my tum was resuming normal behaviour and after a shower I felt nearly human. Got myself dressed and organised, asked for my lift at 6... At 5.15 the nurse came back to look at the PICC line, and by some miracle, whatever she'd put in it cleared it! So that was all working and the 10pm drugs should go into that not the cannula on the other side.
So now all I had to do was go and get my hair cut...

The deed was done - I won't dwell on the details, but it took longer than we expected. We ended up with two shiny people and a huge amount of money! and I have now discovered that a recently shaved head when laid on a pillow exhibits behaviour just like velcro...
I rushed back to the hospital to arrive on the ward only five minutes late... The night shift thought the purple metallic wig most fetching! The drugs went into the PICC line perfectly and all was well... Still no comfy sleeping position but too knackered to care by now.

Thursday, 8 July 2010

Feeling rough

Woke feeling really bad. Massive pains across my back, spreading all through my body, coming in vicious waves. Also my arm is very swollen and sore, and a bit red. I rang the hospital for advice and they told me to come straight in. More when I get back.

Monday, 5 July 2010

Hair today, gone on Friday

We trundled down to the local "Alternative Hair Solutions" emporium - wig shop to you and me. The nice lady looked at me and selected a bundle of hair from the display - placed it on my head... it looked exactly the same as my hair! This pleased both her and dear husband immensely, and they couldn't quite understand why I didn't love it immediately - that it looked exactly as my hair had that morning, which was scruffy, and in serious need of a decent cut.
I tried on several different styles - I was particularly taken with a silver-grey reverse bob style - where it's longer at the front than the back - it looked gorgeous on the mannikin. On me it looked like Posh Spice's great grandma... not quite what I was hoping for.
It was quite fun to try different things - many different looks all in the same day - but in the end sanity prevailed. I came away with something that looked pretty much as mine would have just after it had been cut - but with more highlights. Perfectly suitable for interviews, meetings, that sort of thing.

Then I went home and ordered something purple and metallic from ebay... for those "who cares?" moments!

Saturday, 3 July 2010

A brighter day

Wow - the Justgiving page has gone mad, thank you all so much for your donations! It's astonishing how generous people can be, and I am so touched that people care enough to help.

I have survived the day pretty well, and managed to eat a reasonable supper today, which is a nice change. Feeling pretty worn down now, but it's getting late and I need my beauty sleep more than ever right now. Hopefully life will be a bit more normal for the next couple of weeks now... until it starts again!

Shave Day...

We are all set up to have our heads shaved at the Henty Arms in Ferring, West Sussex, on Friday 9th July at 7.30pm, in order to raise money for the local hospital CT Scanner Appeal. We'd love to see people and part them from their money then, or if anyone would like to support this cause we have set up a Just Giving page where donations can be made on-line here... http://www.justgiving.com/Janey-Hill
Here's hoping...

Cautiously optimistic

Feeling quite perky this morning - was in bed by 9 last night, awake again at 4 (grr) but eventually nodded off again and got a decent rest until 8. Not feeling sick this morning and no headache - yay!!! Hopefully it's over the worst for this cycle.

Friday, 2 July 2010

Sunnier day

Not so bad today - headache starting to fade, and I managed to drive to the supermarket in the afternoon. Might even venture out for a sober evening at the pub... been printing posters for the Shave Day event next week - if the hair is going to fall out then it might as well raise some sponsorship for the local CT scanner appeal at the same time. Hubby has said that he will be shaved too, to show support and solidarity, which I feel is very brave of him!
Hopefully tomorrow will be an even brighter day... fingers crossed. The hospital reckon that I should only need the anti-sick pills for three days each cycle; this is the third day, so we shall see...

Thursday, 1 July 2010

Trying to be a bit normal

Still ropey - stinking headache. They said I can take painkillers as long as I am sure that I have no temperature and am not masking an infection. I didn't think my immune system should be so low yet but took temp anyway, nice and low at 36.3. Took ibuprofen which didn't touch the headache, so a miserable six hours until I could take some paracetemol.
Things improved over the day though, and by supper time I was just wiped out and the headache and sickness weren't so bad.
Went out in the morning to see the man from the local scanner appeal committee, now have posters, collecting buckets and sponsorship forms... It seems as though the shave in must happen next Friday as the hair will be starting to go soon after that and I would rather it was removed than found laying on the pillow...

A few words about what the cancer is.
A grade 3 cancer refers to the potential for development, rather than the stage it's at. Mine is a primary - which means it's the first incidence of cancer, not something spawned by another one. It's early stage, and there is no evidence to suggest that it has spread anywhere else. I have been fairly comprehensively scanned to check this out. Grade three means that it will spread, and quickly, if left alone, so it's important that it's attacked as quick as possible - which it happening now, and is why, strangely, I feel really good about feeling this bad, as it means that stuff is happening... So don't panic - they tell me this is perfectly fixable, and that by Yuletide it will all be done and dusted... I have no reason not to believe this, so it's what I am taking as gospel. Of course doubts creep in, and it gets a bit flaky sometimes, but I have to hang on to what the folks who do this every day tell me - that they can rebuild me and it won't even cost six million dollars!