Time flies when you're having fun...

Well, they say time flies flIes when you're having fun, but I can assure you that spending day after day dozing in a hospital bed, being prodded and poked by a range of medical experts each of whom believe that they have the most suitable experience for my pain.  They don't. It has now been 2 whole weeks since I came into  London Bridge Hospital. I have had 3 ct scans, 4 x rays, 2 ultrasound scans, numerous proddings and pokings, several litre bags of liquid infusions ranging from saline liquid to full dinner in a plastic bag. I have also I also have been injected with a variety  of pain relief drugs, benefitted from the soothing and effects  of these and then the consequences of them wearing off. Not nice.  

On Friday night however I had a super night's sleep. This was following possibly the worst 48 hours of my life in pain which included vomiting, nausea, tummy ache, back ache, chronic cramps and reflux. If you've ever experienced just one of these symptoms them you'll be in a position to begin to comprehend quite how hideous I felt. Preceding this good night's kip however I had managed to convince the medical team that I needed to be fed intravenously as well as watered. Plus, I started the second wave of chemo. This second type of chemo was slightly different to the first and was designed to mop up the last few bits which are believed to be pressing against various internal organs within the peritoneum, hence the pain. So, Saturday morning was spent in a pleasant doze and a feeling of contentment, and Saturday afternoon was spent shuffling along side the river with Mr Man and G to get some fresh air. Since then, I've been dozing, watching crap tv and catching up with my correspondence. Talking is still a challenge as I have a very dry mouth but other than that if I can keep some water and a little sponge by my bed, can be managed.  

So reading this back it may sound very dour however this is certainly not the case.  Now the pain side of things appears to be more closely managed and I know the names of the various drugs I need at each time, I am in a much better position to ask the nursing staff for what I need which is a great step forward rather than them having to check the notes and call the elusive doctor. (I swear he is like the wizard of oz and doesn't actually exist to the naked eye!!) and this is what takes the time to prepare and administer.  So by knowing and pre-empting the needs I can at least stave off the repeated worsening of the pain which takes even longer to get back under control.  

Another very very positive factor of this past few incarcerated days is thee number of lovely people I have had come to visit. I apologise if I have missed anyone off but this week has seen Mr Man of course, Mum and Dad, Bobby Dazzla, Lil' sis and bil, KP, S, Buddy G, Em, former housemate and past partner in crime Kt along with her daughter Miss Molly who I have to say was the most impeccably behaved 2 year old I have EVER come across, let alone in a hospital, the old Goat and Essex Girl.  And between them I have been laden with gifts of a practical nature, including beautiful flowers, pyjamas, clean pants, lip balm hand cream as the number of times I have washed my hands in here has really impacted on my hands and nails.

So overall, how am I feeling? Well pretty good actually. I am getting proteins and nutrients intravenously which by passes the eating/vomiting issues. I managed to walk outside with a little external help. But only with assistance and i had to have a couple of break through pain boosters but not enough to be concerned  about.  The view from the window is still inspiring looking over the river towards the London stock exchange' and I have a short list of people coming in the next week as well, including KT the over glamourous pilot, KP again, the old Goat, Mr Bud S amongst others. Plus the medical profession have now decided to start me on the next chemo, which should get things moving A LOT quicker. And already I'm feeling stronger so thank you for your generous contribution. Verity - your cakes are legendary looking so I hope it won't be long before I get to taste one for real!

Back down to Earth with a bump

So once again there has been a gap in postings and I am sorry to say that this is all due to rather unpleasant goings in my world. To some extent the human body is an amazing thing as mine seemed to hold off from being really sick until after we had turned on an 11 hour flight from the Maldives to go into melt down. I had been a bit sick whilst we were away and could not keep much food down, but generally felt under control. About an hour after getting home though was a different story; lots of vomiting, could not keep anything down no matter how plain and in the end even water was causing issues. By about 3.30am I had had enough and so we called the emergency line at the Harley street clinic as I felt being admitted so that the medical professionals, could do their jobs was the only way forward . However, the doctor in the end if the phone had other ideas and insisted I went to my nearest A&E as it sounded like it was not nothing to do with my treatment with them or the disease and I would have seen a doctor quicker at A&E than at the Harley street Clinic  where I would have to wait until 9am to see a consultant even though they had all my notes and records.   Hmmm...

So we trundled off to Kings A&E at 4am complete with emergency sick bucket just in case of any incidents in the car, a pair of pjs and that was pretty much all. What an experience that was. Although I was processed through triage and into a treatment room fairly promptly the process was very slow moving. A junior doctor tried to find my veins but to no avail. In the end they tracked down a registrar who was a bit more nifty with a needle to get the canula in so I could have blood tests, drugs and so on. By 6.30am I was being given a small dose of anti sickness and morphine which was enough to brewing back the last remaining crumbs of rich tea biscuit which I had been training to nibble on at 2am. The rest was just water and bile. Nice.

I finally saw a registrar at 8.45am who went through all the same questions I had been through with every other nurse and the junior doctor, but at least it was a step in the right direction as she prescribed a more suitable level of pain killers and then came back around 10.45am with a consultant, who again asked all the same questions prodded and poked a bit and came to no further conclusion other than that I needed to be admitted and prodded and poked a bit more until they could find out what was going on.  

Mr Man had to leave just before 8.30am as in true London style the parking attendants patrole the roads round the hospital and you either have to have a permit or pay through the nose on a metre, and so the car had to be moved, plus  Barney Rubble was due home around 10.30am from his own holidays and so someone had to be there to let him in.   I was the left to my own devices with sporadic visits from nurses whilst they tried to find me a bed on a ward which proved rather difficult given I needed a side room as I've recently under gone chemo. Even when I told them I could go private and explained once again in full about the Harley Street option this did not move things along much, and it was 3.30pm that I was finally moved off A&E after waiting outside X-ray for an hour for an X-ray that never happened, onto a haematology ward of all places. Fortunately by this point my consultant oncologist had been contacted and he wanted me transferred to a hospital which he works at and so has the right oncology facilities, and so an ambulance was dispatched and I was taken to the london bridge  hospital with the sirens and blue lights and everything; it only took 10 mins. Just goes to show how bad traffic in london can be as that journey would be normally be closer to half an hour. 

Anyway, on arrival there were more questions, more prodding and poking but at lease by people who knew the back ground, and I finally got the X-ray that never happened at kings, and was booked in for CT scan on Saturday morning, a whole 24 hours later than if I had come here or to. Harley street in the first place. Hmmmm.

So I have been here for a week now during which time there have been more scans, blood tests, pain relief attempts, repeated questions, tummy pain and nausea. I had an ascitic drain for 2 days which removed 5 litres of fluid from my abdominal cavity. I've seen a dietician, an occupational therapist, a physiotherapist and a pharmacist to name but a few. In a weird way the time has gone quite quickly. Now though I have a partial answer and so have a feeling of great relief even though the treatment for the problem is not going to be pleasant. It turns out that even though many of the bad cells which the chemo was successfully shrinking and stabilising, a few are lodged against my small intestine causing a blockage, which means it is not working properly. This explains why I could not keep anything down as well as the chronic abdominal pain I have been experiencing, the treatment  is to rest the bowels along with a course of steroids to reduce the swelling in the Hope that bowels begin to work of their own accord again. You get the gist. This means I cannot eat or drink properly for the time being, and can only have tiny sips of water  or suck on an nice cube until things start moving. If I were to eat or drink then it would just get stuck in my tummy and I would be sick, and if I am sick I have to have a rather nasty sounding tube put down my throat via my nose in order to clear it from the top as well. So all in all it is not brilliant and until this gastric blockage is cleared I cannot have any more chemo or radio therapy to treat the main problem which is a little frustrating but I remain optimistic that once I overcome this hurdle we can crack on and get things moving forward. 

On the plus side of all of this is that the London Bridge Hospital as an inpatient is a much nicer place than Harley street. The nurses here are all lovely and I have a river  view on the 5th floor which you could describe as the penthouse! It is also much more accessible and so I have had lots of visits from friends and family who are able to pop in at lunch times or on their way home from work, which has helped to pass the time. I even had the BF and the old goat taking tIme off work to come and spend time with me which was very generous of them, so thank you to both of you.   I'm also really touched by the number of messages and phone calls I have received from others, and whilst I would love to reply to each one separately I just cannot brIng myself to keep repeating myself hence I thought it doubly important to update the blog so that everyone in Team Nicola could be fully up to date on what is going on.

I promise I won't leave it so long until next time.

The great escape

The Maldives are a beautiful group of hundreds of islands off the southwest coast of India, and they are stunning. Well I say that, we've only actually been to one (two if you could the one where the airport is) but if Cocoa Island is anything to go by then yes stunning is a good word to describe them. We have white sand and turquoise sea in abundance and aside from a brief inclement interlude on day 2 the weather has been lovely. 

This is my reward. My treat for getting through 6 gruelling courses of chemotherapy. Almost as a way to signify the end of the treatment my hair has all but fallen out and I am still suffering from sickness to various degrees but I am determined not to let that get get in the way of a lovely holiday. We chose cocoa island because it was reviewed as a romantic get away, a tranquil spa treat and a luxurious escape from reality. It is indeed all of those things. So, it is a little confusing to try to comprehend why anyone would bring their kids here. Yes, they can snorkel but other than that it must be pretty dull for the kids and very expensive for the grown ups. There may only be 2 young families here but their presence is significantly noticeable when they are nearby. And even when they are not nearby, in fact, as despite arriving a,t the pool very early this morning many of the sun loungers had already been coveted by invisible people who had left their shoes, hats or even life jackets on them.  Not only do I find this very rude but I am also disappointed that the resort staff do no stop it, as others were turning up actively trying to settle onto beds that weren't available.

Anyway, rant over as the big positive of the presence of these families was the existence of a children's menu in the restaurant which meant I could at least get some plain food and in a smaller format, thus reducing the amount of wasted food as well. Whilst I still couldn't eat much, it was a relief to be faced with a bowl of pasta and tomato sauce or a plain margarita pizza than something too rich and fancy. Mr Man didn't go without though which again was a big plus point. After all the way to a mans heart is invariably through his stomach.

It's all a bit of an anticlimax really...

It has been a bit of a strange day, today. I woke up early for me with a strange desire to get up and go to cafe mon petit chou in East Dulwich for breakfast. Most specifically, for some grilled hallumi cheese. This is odd in that I normally don't fancy food in he mornings and also it was a very specific want. So, off I went and since my visit to the wig shop on Monday I have been sporting one of my two new hats which I have now decided are a necessity with the current rate of decline in volume and the excessive cold temperatures we are experiencing at present. The hat thing has shown me though that when it comes to short hair less is more in some cases, as even though it is mostly covered the few bits that tick out at the bottom look terrible and in fact draw attention to the fact I am having follicle issues. So, at some point over breakfast I decided to have it all chopped off and styled short , like a boy. This is a major break though mentally after an incident as a child when my sister had very short hair (although not as short as mine is now) and a particularly cruel neighbour knocked on the or and asked my mum who his little boy was, referring to my devastated younger sister who must only have been about 6 or 7 at the time. For many, many reasons I hope Lil Sis never has to experience even a fraction of what I've been through in the last 6 months, or anyone else for that matter, but due to the one comment alone, the cutting off of all her hair would be the hardest thing to take, and for this reason I doubt she will ever have her hair cut above the jawline again.  I was only a witness to this episode but it has scarred me enough to still recall it some 26 or so years later.

So, I found myself walking into a fairly newly opened hair dressers which is marketed as the clipper for women and children, so I figured that since I wanted a short cut but not really a style as it will be mostly under hats,  and have had all my hair cut off to try and minimise the psychological impacts of it thinning every time I touch it.  It wasn't until I got into bed just now however that I first had a proper good look at it. It doesn't look too bad. It is a bit flattened from having been under hats all day, but as that is where it will stay that is not an issue. And I feel surprisingly ok about it. My new order of cotton hats arrived today with accessories to jazz them up so I have some choice in what to wear,  and Mr Man didn't look too horrified when I revealed my new look this evening on his arrival home from work. 

The plan is that I can manage with hats until after the maldives and when I have an appointment with the wig lady who is sorting me out with a couple of wig options to alternate with the hats until everything gets back follicularly on track. Bonanza! 

So, from cheese to hair to hats its been quite a day.Even if it does feel a little underwhelming to have made such a big decision and action regarding my hair. The positives are that I had enough appetite to eat breakfast, and made an assertive decision, as much as they were that I had such a big chop and lived to tell the tale.  Bring on tomorrow which is holiday packing, and a snowy lunch. 

Sweet dreams!

Happy Birthday to me

Today I have spent a very pleasant with Mr Man, on the occasion of it being my birthday.  The morning passed very pleasantly having a lie in and opening lots of lovely cards and presents, before going for lunch at the Bishop pub (Fish fingers with tomato sauce  -yum), and then spending a very relaxing afternoon setting up my new Apple TV device, which we have now tested and I am very impressed to see how functional and clever it is. I did not really know much about them before today, other than I had seen it on the Apple website as an option but had no idea what their function is. Basically it is a device which lets you watch everything you have ever downloaded onto an ipad or iphone, as well as computer, on the luxury of a proper size TV. You can also look at photos (which would be brilliant if I have invested the time in sorting them out into nice little folders and deleting all those odds ones which are only there to sell things on ebay or  credit card forms scanned and sent as an attatchment with hotel bookings).

I also was a very lucky girl and received lots of other nice presents including clothes, beauty vouchers and a meat cookery book from the Ginger Pig where we went on our recent butchery course.  I also got a digitial underwater camera ready for our imminent holiday where it can be used effectively during our snorkelling adventures in the Maldives which we will be doing this time next week.

This afternoon, we treated ourselves out to a hot chocolate and a latte (Mr Man also had some carrott cake) at the Blackbird Bakery in between braving the bitter cold climate to get outside. I think I had just the right number of layers on to be warm whilst out but not not so hot that on entering the house I immediately want to strip everything off.  So, all in all it has been a lovely but quiet birthday. The positive thoughts for the day are abundant but  I have been very touched by the number of birthday messages I have had from friends and family all over the place. It is always nice to hear from people but especially so on your birthday. So, I am off now to finish my relaxing evening with Mr Man, as I am feeling pretty tired again.  It is tiring work being awake all day.

Coming through the fog at last

As you may well recall from earlier posts, I quite like wrapping up warm in the cold weather and being all cosy in a good piece of knitwear. So it is very exciting to me that the weather has finally turned properly cold and I can wear my warmest scarf, cosiest gloves and wooliest hat when leaving the house. Whilst my outdoor expeditions are still fairly limited in my current state I have managed to get out a little lately and dress up warm in the process. 

I know I have not written much here of late for which I apologise, but I've been incredibly tired this last week. This is to be expected but it has also brought a stronger degree of lethargy which I am having to fight doubly hard to overcome.  In recent weeks my mum has continued to be brilliant and has spent man a long day at the end of my bed nattering away in between making me tea and helping out around the house. It's amazing how quickly our house becomes a bomb site when you stop doing the washing no matter how briefly.  During these very important trips Mum retails me with stories about how she is filling her retirement days and largely it all sounds rather fun in a funny sort of way. She has become an active WI member, completing her right of passage by making plum jam, and also still does some invidulating for her old school in tests and exams. It would appear that this no longer involves just pacing up and down in clunky heels as was the case when I was at school, but in some cases practically doing the exam for the kids. No really, it appears that this is alas virtually true.

Did you know for example that some children in today's education system have hand writing so terrible that they are allowed to have someone write their exams for them so that the answers are at least legible? I always thought scribes in exams were only for those unfortunates who had broken arms or similar which prevented them from writing, or who had a major disability which warranted such support,  not for those who never bothered to practice their handwriting from an early age like the majority of us. During our 30 year reminisce on a week or so ago, G and I discussed the handwriting book we had at infants school where we had to first trace and then copy the shapes of the letters, and then whole words as we learnt them as an integral part of our basic education in reading and writing. I find it utterly staggering that some children are allowed to not do this  regardless of their age. Surely, if they can't write (or in fact read, as it also materialises that many children are given readers in exams as they cannot read the questions themselves) then they should stay having lessons on these basics until they can do it. This may all sound a bit strict, and don't get me wrong I am not talking about children with genuine learning difficulties such as dyslexia and the like, but surely it is a misuse of resources to have exam invigilators reading out the questions, and then writing down the answers for these people if they cant be bothered to practice the basics of reading and writing to reach a standard good enough to take a straightforward written test? 

Anyway, my rant aside (I take this as a measure that I am getting stronger at least mentally if I can put forward my feelings on this matter through the chemo haze) I have enjoyed spending time with my Mum of late, and tomorrow we are going to be brave and visit the Shepperton Wig studio, as I've decided it's time to bite the bullet and sort out my barnet. It's falling out rapidly and although it's more thinning than completely disappearing I really hate finding hair everywhere and it is horrid to touch not knowing if it's going to come out in your hand or not. I spoke to a lovely lady on the phone who explained what would happen and I'm booked in at 1pm to start the process of my new hair. So the positive thought for today is very much that I that to look forward to plus I am getting stronger by the day which has to be a good thing. 

And finally, if I wanted to write this out by hand I could. It would be legible and hopefully make sense. I never thought that this would be considered such an achievement in today's society.

So this is what normal feels like

After my previous post, I've been asked how I know that Madame Chemo is a woman. Well, only a female mind could be so complex on average to cause such a range of physical and psychological feelings in one person. Having as I do both a husband and male Labrador sharing my home it is fair to say that I am qualified to confirm that neither of these alpha males could be capable of such a diverse group of side effects all at the same time.  Don't get me wrong, the male mind is not always easy to understand and is equally likely to generate anger, confusion, pain and distress as it's female equivalent but it tends to do so in a much more simple fashion. Hence Madame Chemo is definitely a woman. 

And so it is with an understandable anxiety and trepidation that I find myself awaiting the hopefully final round which starts on Wednesday 18 January. At present I am feeling much perkier than I have done in a while, and am quite enjoying being awake, alert and in minimal amounts of discomfort. Today, Mr Man and I went out to eat for the first time that we can remember for ages as I quite fancied some grilled meat, a need which was nicely satiated at a local Turkish style restaurant specialising in BBQ'd meats. Perfect really. Although I wasn't scraping the pate clean and ordering dessert, I managed to consume a reasonable amount before conceding defeat, which is a big step forward for me in the food stakes. 

This past couple of days have been quite adventure filled as well. Yesterday I had the pleasure of spending all day in the Harley Street Clinic having Ascitic fluid drained from my peritoneum. A slightly uncomfortable but not too hideous procedure which resulted in me leaving 2.6litres of fluid lighter than when I arrived, so not all bad at all. My Mum and Lil' sis and Mr Man all came to visit me so I had good company all day to pass the time and now I should feel less bloated and more comfortable. 

This morning, my friend S came to visit which was great as I have not seen her fora while and it was good to catch up. We went for some soup for lunch in a local cafe and it was all very civilised.  I also went round to see my oldest friend G for a cup of tea this afternoon as today we celebrated 30 years since our first day at infants school together. 30 years is a very long time and so we can be forgiven for not remembering all the details of our first educational establishment (although not being certain if our second teacher there was Mrs Harvey or not will irritate the pair of us until one of our parents can provide clarity on the details). We have agreed that once I am back on my feet properly we will do something more substantial to celebrate our first 30 years of friendship so we have that to look forward to as well.

So, whilst the next week will bring its challenges I have the weekend to enjoy, and hopefully all things being well I will be in a position to do just that. Just like being a normal person again really. Happy Weekend to the whole Project Nicola team. Enjoy.

No January blues here

January is ticking by and already the days are starting to look a little longer which is a big positive.  Now we just need to get rid of some of the cloud which is making everything look so drab and dull and we will have ourselves the makings of a nice day worth getting out of bed for. I've also always felt fairly protective over January however as lots of people seem to think it is a terrible month full of dull misery after the festive season.  This has always perturbed me since the only reason some people find January less exciting than any other month is because they make it so, by being miserable and telling themselves everything is dull.  In addition, to a general belief in the fact that you make your own destiny (if you tell yourself you're having a rubbish month, then you will do), my birthday is in January and so I spend the whole month looking forward to that, and so how can I possibly think of it as a below par month?

My recovery from the last round of chemo has taken longer than the last due to the cumulative effects of the treatment, but I am now starting to feel more awake and a little stronger which is a big plus.  Today I made it to the Blue Mountain cafe with G for a pot of tea which was a very pleasant way to spend the afternoon.  Yesterday, my Mum came to visit again and she also managed to get me out as far as the same cafe where Mum had a spot of lunch and I enjoyed a banana milkshake, which was again a nice way to spend an afternoon. Tomorrow, I have no plans as such but I am setting myself a goal to get out of the house and make it as far as one of the local cafe's for a sit down and a cup of tea.  It may not sound much but everything is taken a small step at a time at the moment.

It is also not long to go until Mr Man and I go on our reward holiday to the glorious Maldives. It has however come to my attention that due to my recent reduction in size and scale, I don't really have any clothes that fit me, including everything from underwear to outerwear. So, due to my incapacity to get out and about very far to actually visit any shops, I have this afternoon spent some time on the wonderous internet doing some shopping for basic clothing items from the ever reliable Marks and Spencer so I have something to put into my case when we go away, which does not look like ill fitting hand me downs. This is very exciting, as I now have something to look forward to in the form of a parcel being delivered from M&S with much needed new pants.  I just hope it arrives before the next sleepy phase kicks in so I don't miss the knock at the front door, as a holiday with no clothes would be quite frankly a disaster.

Sometimes all you need is a hug

There are sometimes in life when you just need your mum, and today has been one of those days. I'm very lucky in that my mum retired last summer which means she is able to come and see me fairly readily. She also doesn't live too far away which is also handy.  So when yesterday I called her and asked if she would be able to come to see me to provide some much needed company and tlc, I was very relieved when she said yes.  Today she has been here since late morning, and has made tea, toast, soup, put clean sheets on the bed for me (once she has coerced me out of it) did some washing and possibly most importantly gave me cuddles when I needed them. She sat at the end of my bed talking to me and keeping me company for the best part of the day. In short she has been an absolute angel. And I love her for it. Thank you Mum xx

Hello again

Chemotherapy is a cruel mistress. On the one hand she promises to rid me of thus invasion of unwelcome disease which is now thanks to the toxic efforts thus far of Madame chemo shrinking as it should. On the other however she makes me feel drained to my core to the extent I can barely clamber out of bed to reach a glass of water and so nauseous and sick that I couldn't dare move from the bed even if I had the energy.   I haven't eaten properly in about  a week and that's not through a lack of trying (see above point on nausea) which makes me look gaunt and saggy as if all my muscles have just caved away.  Judging by how my legs feel when I try to stand for more than a few seconds, this could well be the case in fact. I have slept for about 42 of the last 48 hours and this weariness shows little sign of abating just yet.  And these are just the physical symptoms. Mentally it is another story again. Due to the large expanses of time spent asleep it is hard to distinguish sometimes between what is real and what is imagined. And what is imagined can be quite surreal which brings its own challenges. I dreamt the other night that I was on a beach holiday in the Caribbean with the strangest mix of people ranging from randoms from university I had not thought if in years to people I have at some point in the last few years come across but hardly significantly.  Add this to the fact it was raining on the beach, there were no hotels and I had to get a boat to the mainland to collect my medication and you have the makings of a seriously disturbed nightmare. Couple this with unpredictable awake phases which tend to occur in the middle of the conventional night and you can see why chemo is both mentally and physically draining. 

So, I've now done 5 rounds of the stuff. That is 83% of the expected course.  Only one more round to go. What happens next depended very much on the next scan and how much further the chemo has shrunk the disease.  One thing is for sure though, is that there will be more treatment and so my arduous relationship with Madame chemo is far from over. 

I apologise for not blogging sooner. I realise it's been a long time but since the end of round 4 I've been wiped out and what with christmas in the way as well things have slipped a bit. Despite my fragile state and propensity to be asleep however we all had a lovely festive break at my parents where I got to nap as required and mr man was suitably fed and watered by my mum, which made both of them feel needed I think.  The astute amongst you will have noticed the hour of this posting however and so as I write in the early hours of the second day of the year when I can surely be the only person awake not nursing a hangover this tells you that whilst round 5 has been fully administered, it's effects are still on full display. Bring on the next one as I think I've just about you nailed. 

Sleeping beauty

If the fairy tales are to be believed then I should be very beautiful judging by the amount of sleep I've been getting in the last week. The mirror however seems to suggest otherwise. I also think that the large quantity of shut eye which my body has been demanding has started to influence what my brain thinks is real and otherwise. In short I am getting confused about things that have really happened and those that I have dreamt up during a drug infused doze.

An example of this fine line between imagination and reality happened on Friday morning when my overly glamourous pilot Amiga K arrived on my doorstep to say hello. As I was still in the sleepy phase post chemo, I had not long since got out of bed and so needed 10 mins to throw some clothes on and sort myself out. By the time I got back downstairs, I found Amiga K clattering around in the kitchen dressed for a night out in her patent heels, silver eye shaddow and my domestic goddess apron using every available surface to mix up some pastry and in the full throws of making mince pies.(Some people may be thinking this sounds like a bizarre kinky fantasy but believe me it is not!!) This vision of surrealness did turn out to be real as weird as it might sound but was just not a scene I was expecting particularly because the night before Mr Man and I had spent ages tidying up the kitchen as our cleaners were due to come on Friday. I don't think I hid my dismay very well, but in any case Amiga K did clear up after herself and in the nick of time before the cleaners arrived. And she left me with a tin of mince pies to feed subsequent visitors and they are very much real.

Another very real event is that Mr Man has now finished work for Christmas and so today we have escaped with the woof dog from the hustle and bustle of the city to spend a few days by the seaside in our castle. After last time we have arranged for the boiler to be serviced tomorrow so that should bean end to any nasty heating related surprises and we are hoping to get the chimney swept so we can bravely use the wood burning stove which will be very festive and cosy since it is so cold outside. Hopefully this time around we will have a more successful trip and I'll be in a better state to enjoy the fresh air and seaside scenery. Fingers and toes are all crossed.

So, our Christmas is now officially beginning. This is a very happy thought as I love Christmas and normally get very festive at this time of year. On the outside it might not look like we are too much in the spirit as we chose not to have a tree. This decision was based on the facts that we are not at home for Christmas and had planned a few days here this week, plus the obvious obstacles presented by the chemo treatment. We still have fairy lights in the trees outside and these give a festive impression to our home which is good enough for me given the circumstances. Another happy thought is that this week Mr Man and I should get to spend lots of quality time together away from home and the interruptions of his work and my hospital interventions. It should be a good chance to reconnect and relax, as well as celebrating the recent news that its not just my thighs which are shrinking as a result of all this chemotherapy. I'm looking forward to it very much.

Going up town to see the lights

So, it's one week until Christmas Eve. How exciting! Unfortunately I have spent most of this week asleep so it has sort of crept up on me a bit. I have all but one present left to buy and even that is pretty much under control now. This just leaves the normally enjoyable task of wrapping them, subject to finding some wrapping paper and the motivation to do it. Hopefully once this is done, I'll be feeling a lot more Christmassy.

I have had quite a few visits up into town recently, so I've had lots of opportunity to see the various sets of Christmas lights up and around in the west end of London. We also had a drive by past Trafalgar Square to see the famous Norwegian tree. It was on one of these Christmas light viewings that I had to have a CT scan with contrast dye. The way that this particular scan is described is as being a dynamic X-ray which feels like a 'hot flush' when the contrast dye which shows up the abnormalities. Well, whoever described it as such has almost certainly never had either a hot flush or indeed a CT scan, as to say it was a bit like a hot flush does not come close!! The best way in which I can describe the quite frankly hideous sensation which over came me would be to say it felt like my blood was being set on fire in my veins culminating in my heart feeling like it was exploding. Overall suffice to say it was not pleasant. It is no surprise therefore that even after all of my recent sleep I still needed a big lie down when I got home to get over the whole ordeal.

Despite the distress of the ordeal, we have now had the results of the nasty CT scan, and the upshot is, it's all shrinking. Everything is on track to beat this thing which is reassuring. I'm just looking forward to being awake and alert enough to celebrate this milestone. In the meantime, I'm still enjoying my naps. And believing myself healthy and pain free.

A renewed energy

So, I am now officially over 2/3 of the way through the planned chemotherapy programme having made it through four complete sessions now. Woo hoo! This is quite an achievement, especially given how terribly round three played out, which meant I was quite nervous as we started round four, especially with the added complication of a fault with my Borg port which delayed things by 2 days. Anyway, these hurdles and anxieties were overcome and I'm happy to report that I am now on the other side of round four and starting to get more energy and appetite which is a big step forward in the very rightest of directions.

This week aside from sleeping I managed to be awake enough for a visit from my very good friend Jimbo (of the jet set fame). For a boy he is not that bad at keeping in touch but we were quite appalled to realise that we hadnt actually seen each other properly since his wedding to the lovely E, which was nearly 4 years ago.... Terrible. We do speak quite regularly through the technological marvel that is Skype normally whilst he is bored on a night stop somewhere in America and texts and emails flow occasionally, but to have not spent any time face to face for long seems wrong, however as is the case with any true friend it really doesn't matter as from the second he walked in the front door this afternoon to the moment he left early this evening, we were chattering about everything and everything as if we were picking up from yesterday's tea party. It was a lovely afternoon. As well as being great company Jimbo also kindly offered to and empty the dishwasher and made tea, in addition to arriving armed with cupcakes to start with.  Plus, the first thing he said when opening the cupboard to make the tea was "what lovely mugs" on spotting a fine selection of Emma Bridgewater, so I was smiling from the off really.

And it has not just been one friendly angel who has visited me this week. Whilst i was having chemo on Friday the old goat came along for a few hours to keep me company after having had the new port put in and then having to have a full day of chemo on the hospital ward rathercthan in the day care centre. She always manages to make me laugh and so made what could have been a very dull and miserable afternoon into something quite fun. Then, in yesterday's quagmire of sleep requirement coupled with the dazedness and confusion normally associated with the post chemo haze, I had an urgent need for food and no way of getting anything suitable. One text to the brilliant G later and I soon had several cans of fruit to provide me with the necessary sustenance to sustain my self out of bed, and begin the long climb back from ball of exhausted mush, to real human being.  And then last night, my batteries ran out suddenly and I couldn't muster the energy to do anything, least of all finish changing the sheets on the bed which i had started in the afternoon. This might not seem much but given how important regular clean sheets are to me this, tied with my general frailty and lack of motivation to move caused me to have a bit of a patheticness attack, when Lil' Sis responded to my cry for help and spent her evening feeding me spoon peaches, sweet tea and most importantly put clean sheets on my bed so I could have as restful a nights sleep as possible.  So although I am still tired and in the post chemo haze where I loose myself mid sentence, get a bit confused when trying to do more than one thing at once, I am starting to come through it and sat nights good sleep really helped. 

Today's happy thought therefore is that these individuals have all delivered support and assistance to me in my hour of need, and all three have contributed to my recover in this cycle.  From talking to the old Goat,Jimbo, G and Lil' Sis I also realised that in the abyss of chemo and the distress of the last cycle i have lost track a little of what positive really looks like. It has therefore reminded me that the need to be positive has to be specific and so I am focussing on two key positive thoughts at present; I am healthy; I am pain free.  Please join me in manifesting these happy, positive thoughts to make them  a reality as soon as possible. That way we can all get back to normal and I can get back to making tea for visitors in my home rather than the other way round!!

Slight detours are part of every journey

It has been a frustrating week so far. I started off in a lot of pain and was actually sick over the weekend which is a new side effect for me, and it left me feeling pretty rubbish to say the least. I was hopeful though that once the chemo round 4 got underway the pain would recede as it has done in the past. Disappointingly, round 4 has had to be postponed as when I went for the routine bloodtests they found my so called magical port had "broken" and so they could not draw blood from it nor can I have chemo injected until it is fixed. I am currently waiting to hear when they can fix the port which will involve another hospital procedure and once I know that then I'll know whn chemo can recommence. In the interim, I have a team of pain specialists working with me to reduce the pain and sickness which I am currently enduring.

This post therefore may not be as perky or as interesting as some of my others but it is serving a very important purpose; it is letting you all know what is going on so you can keep sending positive thoughts in my direction and in turn it allows you to understand why I am not answering the phone or returning messages as faithfully as I normally do. Until I feel better and everything is back on track I will be focussing on me time and taking all the positive energy I can find to turn this little unplanned detour into a scenic diversion. Thank you all for your love, positivity and understanding.

Oh I do like to be beside the seaside

This weekend Mr Man, Barney Trubble and I have escaped from the big city in favour of sea air, country views and a taste of rural living in our castle. Due to recent events we have not been able to get down here for a while as since I cannot drive at present due to the side effects of some of the medications which have a tendency to make me a bit fuzzy round the edges, the driving is all down to Mr Man. Due to his five day a week a job and a likeness for playing hockey on Saturdays, weekends by the seaside have not happened as much as we would have liked as by the time hockey is over and we got here, we would only have 24 hours before it was time to go home again. However, this weekend Mr Man has foregone the opportunity to be spotted by the GB selectors and took Friday and Monday off so we could have some bracing fresh air, and a very much needed change of scenery.

We arrived on Friday afternoon, although it was very dark when we got here. This was partly very noticeable as the sun had set, but also the lack of orange glow from street lights made the night sky look even more black than it ever does at home. When there is a clear sky the star gazing opportunities are phenomenal and I could spend many an hour getting a crick in my neck trying to identify the plough and Orion which are the only two constellations I can pick out with any degree of certainty. After settling down for the evening feeling very pleased that we were inside in the dry whilst it was pouring down outside and very big rain was hammering in the conservatory roof, it became apparent that whilst we may have been dry, we most certainly weren't warm. We had no heating. Terrific. According to the thermostat it was a toasty 12.5 degrees Celsius and no amount of switching it on and off again was going to get the boiler to heat the radiators. We have recently had the bathrooms refitted and so have been aware of the delicacy of the boiler with regard to hot water, but the heating issue was a new problem. Friday evening was spent shivering under blankets and I ended up going to bed dressed as if I were spending a night at the ice hotel. I even opted for my eye mask as although it was plenty dark enough, it provided added warmth to my face. This morning, therefore, I was surprised at how easy it was to find a local heating plumber who was very helpful and able to come out this afternoon to rectify the issues. You would certainly never get such efficient helpfulness in London and certainly not from someone found essentially through the yellow pages. Anyway, boiler expert Lee arrived this afternoon and within about 20 minutes had the heating working and hot water coming out of the taps. He identified the problem which requires some specialist spare part and has recommended someone also local who is an expert in our sort of boiler and so hopefully we can get it fixed and functioning for good. Result. So at the time of writing this I am at least warm.

Earlier on today we took the woof dog out for a walk over the hills to the South west coast path where we had the misfortune to come across what can only be described as several hundred nutters participating in a range of long distance running races along the SouthWest coastal path. The definition of nutter, and my classification of the situation as misfortunate can be understood by thinking about the width and incline of the southwest coast path (it's about 50 to 100cm wide in places and very steep and ondulating given that it follows the Jurassic coast throughout Dorset) and then recalling the amount of rain that fell the night before (a lot). This all lead to basically a mud slide in places which is manageable when tackled slowly and whilst wearing the appropriate footwear (Wellies) but made a lot worse by idiot runners wearing trainers and trying to overtake other users of the public footpath between gorse bushes and over slippery bridges. It wasn't long before I was quite irritated by these people who seemed to assume that we would just get out of their way so they could hurtle past us on the narrow paths because they had shouted 'coming through' as they approached us panting and sweating from behind. The key issue was that due to the narrowness of the path there was no where to get out of the way to , a fact which seemed to have escaped most of these Lycra clad sadists. Barney did his best to trip a few of them up, but in short it was disappointing that they managed to ruin what was an otherwise good walk.

So, despite the initial cold snap and the mud bath of a walk, it is super to be able to have a change of scenery and some brisk sea air, which is a tonic all by itself. And if that is not positive enough, I just have to recall the look of misery on some of those mad runner's faces as they slipped their way along the Jurassic coast, and be very grateful for my hunter Wellies.

Happy Christmas Team Project Nicola

Apart from to Mr Man, I don't send Christmas cards anymore .  This might seem odd from someone who is so excited about Christmas and who has talked in this blog about her love of writing and sending cards, but the logic is this;  Rather than spending money on buying and posting cards, in which you do not have the opportunity to write a proper letter type message, why not spend the same amount of money on making a charitable donation of some sort in lieu of cards and telling people this is what we have done.  I know that not everyone shares this view.  BF imparticular gets quite cross that I have not sent her and her family a card, but as I have told her before and will tell her again, it is my choice.  Plus she still gets a present which is much more exciting.

So here is it..... in case your email gets lost in the ether somewhere this is my Christmas card to all of Project Team Nicola.  Mr Man and I have bought you a pair of goats, but don't worry they wont make a mess on the carpet.  I hope you like them.

http://www.oxfam.org.uk/shop/ECard/ECard.aspx?P=3dbd586e-ef07-4d79-bf7c-a43cf8535da4&U=ffa66cac-a7f0-4df4-a1c9-b1739e9de621&L=92601b1a-90ec-42c1-94db-75231dc6118e

And as for writing proper cards, this way I can continue with proper correspondence throughout the festive season.  Every one is a winner.

My inner womble

So after a few days of uncomfortable home bound containment, I today managed to leave the house and venture as far as the post office to collect a parcel.   Despite feeling a lot better today than yesterday and having managed a full night's sleep rather than waking up every two hours, I still was not taking any chances and so took Lil Sis's house keys along with me (her house is en route to the post office) in case I needed an emergency stop. Fortunately I did not, but always better to be safe than sorry.

I also took the opportunity to wrap up warm and benefit from the blustery weather and chilly temperatures which we are now enjoying. To be honest, I think just standing outside and letting the natural elements blow away the cobwebs was on its own enough to make me feel better after so long inside, but I very much enjoyed my brief walk as well.

Whilst I was out I did notice a rather disturbing amount of litter which appeared to be decorating the pavements, gutters and roads in our area today.  I also followed a woman along the road pushing her mandatory buggy complete with surf board thing on the back for the school age child she had in tow, and was extremely disappointed to observe that both she and her child just discarded their sweet wrappers on the pavement rather than find a bin (there are lots, it is a main shopping road) or put it in their pockets until they got home.  I was a bit too far back to say anything as by the time I caught up with them the bravery had left me, but I wish I had said something now, not least because the child's book back she was sporting on the buggy was one from one of the allegedly better school's in the area. She should have known better. Not only is this unsightly and potentially unhygienic I find it very sad that people in general think it is acceptable to litter.  There was an article in a magazine a couple of weeks ago about some towns in Britain which have taken a hard stance against litter bugs and quite rightly too.  It is now illegal to drop a cigarette butt on the pavement as this now counts as litter (about time too), and apparently it costs every citizen in the UK £5 a year to pay for the street rubbish tidy up services.  So next time, I see someone littering, I think I will make more of an effort to stop them seeing as it is my money they are wasting.  To compensate for my cowardice in the face of a litter bug however, I did pick up several pieces of rubbish which ironically seem to have been scattered across our road as a result of the bin men emptying the recycling today, and so I feel I have done my bit to make East Dulwich a cleaner place for today.

So, onto the positive thoughts for the day.  Well, firstly I am feeling a bit better than yesterday and have managed to leave the house, as I have already said, and secondly today I received a card from an old university friend of mine who although I do not see or speak to her very often, I think of very fondly and so was delighted that she got in touch as I had not heard from her throughout this whole ordeal and just a note to say she is thinking of me means a lot.  Thank you.  And finally, I have contributed to a cleaner society by picking up some rogue litter this morning.  It may not be a lot in the grand scheme of things but every little helps and so hopefully if we all do the same each day then those £5 can be spent on something more important than picking up litter.  It must be my inner Womble.

Home Alone

So I am still oscillating between the two extremes of gastro-intestinal function, which means I am still disappointingly rather housebound as the new week begins.  This is rather annoying on a number of levels but not least because it is now finally cold enough to need to wrap up warm when venturing into the elements and my winter woollens, coat and boots are starting to get impatient.

As I spent the weekend chez moi, I was fortunate enough to have some kind visitors to come and pass some time with me and act as intervals to my television viewing schedule.  After Mr Man left on Friday lunchtime, G came round in the afternoon and she very kindly collected my prescription from the chemist for me (this was quite an ordeal for her as the chemist in question is quite frankly inept and has clearly been helping herself to the doolally drugs for some time).  Baby A was quite happy watching Top Gear and so there was no screaming from him on this occasion, and we had a nice chat and a cup of tea. On Saturday, lil sis and BIL popped in during the afternoon to fuss Barney mainly, and then came back in the evening to watch Saturday night TV with me.  We made BIL watch Strictly Come Dancing (to which I think I am now officially addicted) and so it was only fair that when it came to choosing a film afterwards it was one that he would like.  Despite Virgin Media having access to over 300 films I can never find one I want to watch, but we went for Attack the Block mainly because it had the quite funny bloke who normally makes films with Simon Pegg in it, and having liked Hot Fuzz and Paul a lot I think my logic was that if it was only half as funny than that would be ok.  Sadly, despite having a few amusing bits in it, it was not a great film as despite being very surreal and clearly made up, it seemed to advocate kids on estates carrying weapons and mugging innocent people which are two things I am particularly adverse to due to past personal experience.  BIL however was happy enough and he had been to the shop to get me some salt and vinegar french fries to aid my recovery and so on balance it was not a bad evening.

Essex Girl came over yesterday afternoon, leaving CS at home alone in charge of the children and with sole responsibility for a roast dinner.  I dare say CS is hoping I get better very soon not least because then his wife won't have quite as good a reason to abandon him at the weekends and he can spend his Sunday's not being harrassed by a three and half year old who from what I understand is not averse to grassing up her own father for eating his dinner on the sofa in front of the TV when Essex Girl was out one night this week!  Poor CS.  Essex Girl brought with her entertainment in the form of Bridesmaids on DVD which we watched and gasped at in horror at various places, but overall found it very amusing. We decided that the main bridesmaid character was too thin, and was wearing clothes which did not suit her age or her figure, and we also decided that the Irish Policeman was actually very nice and was quite a catch for the afore mentioned bridesmaid long before she realises this for herself.  (She is American - they are not reknowned for being the smartest especially in films are they?!) We were confused by the presence of Matt Lucas, and unconvinced that the main bridesmaid character had ever in fact eaten one of the cakes she was allegedly so good at baking, but overall impressed by the film. I was kind of expecting a stereotypical cutesy American chick flick type thing but was pleasantly surprised at how un-sugary it was. If you haven't seen it, then you should.  It is funny.

Mr Man returned earlier than expected from the Father for Justice event with his friends, although his physical presence yesterday afternoon was earlier than expected, it took a good six hours for me to get any sense out of him as he was quite cabbage like in appearance and vocabulary, and so to all intents and purposes he may as well have not got home until about 6pm which is when I was expecting him back to start with.  I have interpretted the nods, grunts and odd syllable to mean he had a good time, and the brief stories of vomitting, escaping goats and inability to recall what was served for pudding to indicate that the good people of Norfolk were on the whole relieved when the group left the area on Sunday morning.

So, despite the enforced homestay, my weekend was punctuated by various positives including good friends, humourous entertainment and the safe if pickled return of my favourite cabbage.  Now all we need is to get the balance right internally so I can get out there and start making the most of the winter wardrobe. Standing on the decking a couple of times a day and taking a deep breath is not quite the same.

Back from rock bottom

Well it has been a while since I last wrote and so I should have plenty to say. And indeed I do. There are lots of positives to be had today, over a week's worth to catch up on, plus a few other things to put all the positives in perspective.

So first things first, how am I doing? Well they don't incarcerate you in hospital for 4 days unless it is necessary, and so I'd better explain what was going on.  I was suffering very painful abdominal pains, accompanied by fever, a high temperature, nausea and vomiting and dizziness. In short, I was in a bad way. But, I am now much better and am able to appreciate the current state of affairs because I have a rock bottom to compare it to.  And rock bottom is probably the most appropriate way to describe it, as i will explain later. Mr Man came through the whole experience relatively unscarred although I'd like to think that even he would recognise and adjust his actions just in case there is a next time, and decide that taking a person with shooting, stabbing abdominal pains, nausea and dizziness to a hospital in a hard suspension sports car along some of the worst potholed roads in London is not a good idea. At 2.15am in the early hours of Thursday morning however, I did not have the energy to argue, but held onto my improvised sick bags for dear life. Luckily the car made it there unharmed, although I'm not sure the same is true for the passenger. 

On arrival at the hospital a very competent doctor assessed me and sent me for X-rays to establish a cause of the pain, and quickly concluded that a combination of my medication, the chemo earlier that day, the anti sickness drugs given alongside the chemo, dietary intake (ie lack of it) and my low red blood count and associated immune system deficiencies were causing what was essentially chronic constipation. Sorry to be so candid, but I have no qualms about talking about these things and pity anyone who winces at the thought of talking aloud about what should be a daily and integral action in any healthy human life. Poo.  For the next 4 days I then endured a series of doctors and nurses of varying degrees of capability and kindness. One or two were lovely, very helpful and actually did their jobs well by reading my notes before they met me and actually listening to what I was saying.  The rest were not. Luckily shortly after admission once the pain was more under control, I was in a better position to deal with the worst of the medical staff, but it still disappoints me that some people are seemingly too lazy to read a patients notes but would just plough in and start from scratch with the same questions, jumping to their own conclusions thus adding no value at all to the experience.  Continuity and quality of ongoing patient care are certainly areas to be improved.

So once we had established a cause, we needed a solution. This is perhaps where the frustration on my part really kicked in because there wasn't one. There were lots; any, some or none of which might work either in isolation or in conjunction with each other. Add this to the wide array of nurses and doctors getting involved meant that it felt like no one was in control and it was all a bit haphazard. I was given every possible 'let's get things moving' option under the sun including, injections, suppositories, strong tablets, natural tablets, gentle tablets, drinks and enemas. And then had to wait to see what happened. Eventually things did start to move, and by Saturday we were making progress but not without a lot of discomfort and trial and error.  Due to the afore mentioned high turn over of nurses it kind of fell to me to assess how much laxative I felt I needed, which was an odd concept but after all no two human bodies are the same and only I know how my body is feeling and responding at any time. So I got to a balance just about by Sunday and was allowed home, but more chemo to finish the course on Monday and Tuesday complete with anti-emetics further disrupted the balance, and even now a further 4 days later on, I am still not quite right, which means I need to be careful how far I stray from the bathroom and leaving the house is a bit of a brave move, so I don't intend to do so at least for the time being. 

Mr Man is away this weekend with his university friends on what could be mistaken for a fathers for justice rally and so I am home alone with the Pupster Barney and whoever may pop in for company.  I don't mind really that he has gone away for the weekend despite my delicate current state as there is not really anything he can do for me other than provide light entertainment, company and amusement and sometimes these things are not always his forte.

Most of Mr Man's university friends have been blessed to have children seemingly relatively easily and so the idea behind their weekend away is to all go away with their kids (most of whom are boys) making it a Dads'n'Lads weekend.  Obviously the closest thing Mr Man has to a lad is the boy wonder Barney, and oddly Mr Man was rather reluctant to take him along.  However, despite the lack of relevant accessory he has still gone along and will no doubt have a super time when the supposed adults regress back to make it a houseful of children, with no responsible adults in sight. I do feel for the  landlord of the beautiful looking converted windmill in Norfolk... What have they let themselves in for.

Anyway, this leaves me at home with these positive thoughts. Firstly, despite an unconventional route, it is worth noting that I am now 50% through the chemotherapy treatment programme. This is very good news as it means I'm past half way, and those bad cells must be getting a good kicking in there by now.  Obviously I'm hoping the next three rounds are more akin to rounds 1 and 2 in experience, and that round 3 was a one off.  Fingers crossed.  Secondly, whilst it has not been a nice experience over the last 2 weeks, the weight has fallen off me which some people think is a bad thing but I'm still no where near what could be considered underweight so I'm taking it as a positive. And thirdly, by the time Mr Man comes home from his weekend away he should be refreshed and have had a good break to re-energise to taken on the second half of the Project Nicola treatment challenge, and I should have got some balance back in my bowels. A long way back up from rock bottom already, I'm sure you will agree. 

Positivity reigns supreme

So it has been a slightly different version of chemo this week. After day one which consisted of spending 9 hours in an arm chair on the day unit I then had to be rushed into hospital at 2am on Thursday morning due to chronic abdominal pains, the strength and duration of which I had not experienced before. This was accompanied by feverish sweating, a feeling of nausea which eventually lead to me being violently sick and a spot of dizziness for good measure. All in all it was not very nice.

Since I arrived in the inpatients ward at the hospital though I have been well looked after and they are sorting me out. It's taking a while but we now know the issue and are just waiting for things to progress so we can get back on track with the chemo programme. I had the blood transfusion yesterday which went well so hopefully now I have a full stock of red blood cells I can fight off the impact of Wednesday's chemo to make it focus on fighting the bad guys. Once we have sorted out the abdominal pain we can crack on with what should have been Thursday and Friday's short bursts of chemo and then I can go home and get on with the business of being asleep.

The key positive to come out of all of this is that not only is the abdominal pain being sorted and hopefully will be better managed once and for all, but I now know for sure what my blood group is. Despite all of these tests and procedures I have never know what type and I was curious. And what do you know. It's A+. How much more positive can we be?