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.