A cloudy eclipse & cautioned by the fun police

This blog post was written yesterday afternoon but due to inefficient wifi connection & the fact we met up with friends after in one of our favourite pubs delayed publication until now :-)

I'm currently in hospital for my continued treatment staring at the bright sunshine thinking why wasn't it like this for the solar eclipse earlier in the morning?! There I was in the garden, wearing my dressing gown (obviously a true astronomer's outfit) clutching my safety glass so as not to blind myself and ..... there was absolutely bugger all to see here in Surrey!! Gah! Frustrating!! Talk about cloudy with a chance of meatballs weather. Cloud cover was so thick, it was like soup.

It made me reminisce about the August 1999 eclipse. Back then, when show time came I was in central London and me and my work colleagues were out in Hyde Park armed with pin hole cameras and eclipse glasses. It was also cloudy then but not as bad as earlier so we saw 'something' with the most memorable part for me noticing how quiet the birds went when it got gloomy. Very eerie.
It was also an opportunity for me to get to know my new work colleagues better. Now, I'm in the middle of cancer treatment. How times change. I'm just hoping I'll still be around to see another eclipse!?!

Anyway, Mat hand-delivered a falafel wrap from the falafel stand man at Waterloo for lunch and so we were able to eat these in the hospital garden sunshine which was nice. I don't usually have company for treatment as most people are at work so this was lovely.

Replenished for treatment, I got told off during it! Or rather some of the nurses did! As has always been the case, I treat the medical team that care for me like friends and try to remain upbeat whenever I'm in hospital with them. We try and have a laugh and I like to say hello to all of them if they are around.

Today, apparently there was far too much laughter coming from my cubicle and it wasn't fair that one patient was getting so much attention as all patients are only supposed to have one nurse....

I'm not sure if it was another patient (I think so) or 'management' but I have no words other than the fun police are clearly everywhere & watching you... Don't laugh too much now!

PS: F*ck cancer, ignore the haters and laugh like you've never laughed before.

I'm back, I'm still here, I never went away

Yes, I know I look like a duck & my hair needs a brush but it's a look okay?!

First and foremost my sincere apologies for the delay in posting this brand new blog post and for generally not being around in all aspects - blogging, emails, etc.  I'm pretty sure you are bored of looking at my flower pictures posted from last month and are due for an update.

Well, the flowers are now a lovely distant memory and the Valentine's cards have been sent and received.....and I have been rather unwell.  Yes, I know this is a bit odd to say given I'm going through cancer treatment but I was rather unwell in addition to the cancer treatment. Fun times!

In a nutshell, during the latter part of February I felt really terrible and I initially put this down to the chemo side effects.  When I actually felt like I was going to die (a little dramatic but I genuinely felt like I was going to!) we called the hospital and they asked me to come in immediately for tests.  

After an eye wateringly expensive taxi ride into central London via the strangest route in, I filled several test tubes with blood for various tests to find out what was wrong with me. The medical team did consider keeping me in hospital but fortunately I was able to go home once they had done their jiggery-pokery. 

The nasty that was making me so ill turned out to be the Influenza B virus which according to Wikipedia, so it must be true.... only humans and SEALS can catch!!!! I know my memory has gone all Scooby-Doo at the moment but I don't recall snogging a seal, so I can only put this down to catching it from the dirty cow who sneezed without covering her mouth at Waterloo Station and I was within droplet distance of her. To be fair, I could have caught it from anywhere but YUK!!!!! The hospital even made me wear that mask above for my repeat visit so I didn't infect other patients.  I was rather glad it was 'just' a flu virus and not another nasty such as meningitis, pneumonia and god knows what else they were testing for. 

To help fix me, on top of all my numerous cancer drugs was added four antivirals, an antibiotic, two bags of saline drips, fever, aches, pains and lots of tears of self-pity and frustration but I think I was allowed this. I had lots of good things planned with friends during this time and I was too unwell to do any of them.

I was pretty low. More so than my usual lows. Cancer really f-cking sucks anyway and to be ill with something else is just a bit too much for anyone in my opinion.

Thank you all for your messages, kindness, your friendship and your support. I'm so sorry I haven't had a chance to email some of you but it was just impossible at times. I will do so.  A big thank you to Dave and Milla for my lovely Meg Rivers Clementine & Almond Cake - courier delivered in a beautiful tin too! Wonderful sustenance!

Finally, I try and tell him everyday but I just want to say to Mat, my amazing husband, thank you. I know it must be frustrating being with me at times as I can be pretty off the scale in every way (believe it or not!!) but I appreciate everything you do for me.  I'm looking forward to the day I actually don't have any fatigue and we can climb together again one day but just know that being with you doing absolutely nothing means absolutely everything to me.

ECG drama, getting crafty & flowers galore

Usually when I go to hospital for treatment, everything is done so efficiently and without fuss (from me and my treatment team) that it is actually quite boring. Dull in fact! I'm grateful for any entertainment that is on offer, namely having a laugh with the nurses and staff. I think some of the other patients that are there are not quite ready for me yet so unless I actually get eye contact from one of them, I leave interaction to a cheery hello. I'm pretty sure they have other things that they would rather get on with than having to deal with someone like me!

Anyway, having now gone through my second round of treatment I thought I was more aware with what my body does before, during and after it and so fully prepared.  However, yesterday as I wandered down to UCH for my next round of chemical warfare I started to experience some weird tightening on my chest area.  As I wasn't familiar with this sensation, I mentioned this to one of my nurses. Well! That woke them up!

Out came the blood pressure machine (normal), thermometer in the ear (normal), pulse check (normal) and general conversation on how I was feeling (normal for my treatment).  After pretty much concluding that I wasn't going to have a heart attack in their cubicle, I was still sent for an ECG (electrocardiogram) test just to make sure that the electrical activity of my heart was yep, you've guessed it, normal.  

Not sure if any of you are familiar with what an ECG test involves but in order to measure my heart's electricity, sadly a meter man does not go into a dark place with a machine to get a reading..... 

Instead, you have to have these small fabric pads which are connected to leads stuck on to your pulse points and heart area, stay very still and the machine is switched on.  You then get the classic small up and down line reading (normal) and hopefully you don't get the massive peaks (not normal) or a flat line (erm, possibly dying or dead).

I was actually quite excited to experience a new medical procedure (yes, I'm a saddo) but this turned into embarrassment because the small fabric pads would not stick to my skin because.... I was too moisturized!!! Yep, all these oils, lotions and potions I have been slathering myself in proved to be a hindrance. The poor nurse who was attending to me was doing his best to stick as many pads to me (there was about 5 at one point round my left boob -a great look) but they just kept coming off! He had to get a doctor in to help in the end and fortunately everything was yep, normal.  

They believe the tightness was caused by the steroids I'm taking (Dexamethasone) which causes constricting of blood vessels while it is doing its magic.  I feel OK now and I haven't experienced it since so I'm hoping it is a one-off. I really hate these steroids. They make me feel so pumped up and high I literally do not sleep for 2.5 days then go on a massive come down which makes me feel cr-p, feel OK and then it starts again.  All the other drugs I have to take don't help plus obviously the chemo. But, it is keeping me alive so a small price to pay.

Anyway, to distract myself from all of this, I have been getting crafty and making Valentine cards for charity. I made around 25 'to sell' to people at work with people asked to contribute a minimum of a £1. Latest feedback I have received is that they have raised over £50 which I am delighted with! People are so kind and giving.  My generous husband has also mentioned that he would double final monies raised and once all sold, I'm hoping to donate to Myeloma UK and another cancer charity (I'm still deciding which one).

As a victim of success with this, I have now been asked to make birthday, anniversary and other event cards so watch this space!

I have also received some beautiful flowers! As it is still a little cold for me to go out in the garden to start tinkering, they have brightened the house and I feel so loved. They really are not necessary but thank you so much. I have put photos below to brighten this blog up a bit also.  

Anyhow, I'm off now to try and get some sleep before I take more steroids later and spend the day wishing I still liked hard core clubbing so I can make use of feeling so bloody wired!!

Thank you all once again for your kindness, love, support and friendship. I really could not do this without you all and I am grateful from the bottom of my very 'normal' heart.

♥

From Mat

From Fi, Roger, Elliot & Megan

From Lucy, Scott, Alex & Matilda
They smell gorgeous & I've just realized I look like some weird ghost thing in the mirror!!

2015 Valentine Cards made by me :-)

Digging for bone marrow & chemo conconctions

My apologies for the blogging delay but quite frankly I have felt better. In fact, this is the best I have felt in a few days and I still feel rather rubbish.

It's been two weeks since we returned from our holiday and in that time;

- the weather has been frrreeezzing! I thought the 'Seoul Transit Tour' we did in South Korea prior to flying back to London was cold enough but this is on another level of cold we are currently experiencing! It doesn't help that it is also very rainy and  I can't fly away from it but never mind. We are forecast some snow which I am looking forward to, if only for an afternoon to take some pretty photos.

- after confirmation and consent forms had been signed for this round of treatment to start, Mat and I cheered ourselves up by visiting The Art of the Brick exhibition over at the Truman Brewery.  We also indulged in a hipster lunch in a trendy pub somewhere in Shoreditch. The lobster could have been fatter and the roll it came in bigger but it was tasty nonetheless. Photos of the exhibition to follow.

- I have been catching up with family and friends. All of you remain a constant source of strength -  you know who you are.

- I had a bone marrow biopsy conducted. This is so that the medical folk can measure how 'bad' the cancer is and how 'good' I'm doing following treatment. I'm always awake whenever I've had this procedure done (I can't be doing with the palaver of a general anaesthetic) and pain levels from it are dependent on the person conducting it & how much painkiller injections they decide to give me.  I like to think I have quite a high pain threshold but when it feels like someone is screwing a mini apple corer into your hip bone, I figure its OK to shout a little.  However, the comment of; "You would never see me get this done. No chance!" from the nurse was neither useful or helpful. I DON'T HAVE A CHOICE!

- After years of taking nothing stronger than a Lemsip, I received my first chemo treatment last Friday. Before my stem cell transplant, I have 4 cycles of chemo to go through with 1 cycle lasting 1 month. Fun times!  In addition to this, I have been given tablet upon tablet upon tablet upon tablet to also take. This includes steroids and all the crazy highs and lows you get with taking all this sh-t.

Just like before, I'm happy to down whatever pills and potions I'm given but it's the immense fatigue that I find the hardest. It feels like something has sucked my energy levels dry and all that is left of me is a dry husk where my spirit used to be.

I'm remaining positive and trying to keep cheerful. I'm grateful for everyone's good wishes and the fact I have the chance to get better and frankly to carry on living. 

It's just really, really hard.

F-ck you cancer.

Reality check

En route back to Manila after lovely Siquijor, Dumaguete airport, of all places, provided me with a reality check from a simple back and foot massage prior to departure.

A group of blind masseurs, male and female, work at the airport providing weary travellers with back or feet massage for 100 pesos (the equivalent of around £1.40) for half an hour. This fee is a way of earning an income for them which would not usually be available to them because of their disability.

Being a massage fiend, I opted for both a back and feet massage. I was assigned to a gentleman called Gel who promptly set to work on the knots on my shoulders.

You know me, I like a chat so obviously we got chatting and I asked Gel what he did before becoming a masseur. He told me that he never got the chance to do anything else other than school because at the age of 14 he contracted the measles virus which made him go blind.Understandably, it's something he finds difficult to accept even after all this time. He is, however, philosophical about his plight but looks forward 'to being in heaven where there is no disability according to the gospel of Isaiah'.

I'm not really one for religion but I let him speak and I also told him to be proud of his skills as not many people could do what he does as well, regardless of what else was awaiting for him on the 'other side'. He said he was glad to have met me and thanked me for my 'Christian words'.

Again, I was not trying to be religious when I spoke with Gel. I genuinely meant what I said to him and I don't feel I was being Christian in what I said to him. Just being honest and as someone who believes in telling people when they have done a good job, I did so.

What Gel also reminded me today is the importance of being resilient, of never giving up and to live a life as well as you possibly can regardless of what the universe has in store.

It's easy to forget that when you're having fun 'on holiday' but a good reminder for me as I return to my medical reality.

Thank you Gel, in more ways than one.

Siquijor - final days

Fri 9th, Sat 10th & Sun 11th Jan

For all its laid-back, island charm, inevitably easy access to luxuries such as reliable electricity becomes something that one starts hankering for when you don't have it at Siquijor. There is electricity at our particular resort but only because the owner is forward thinking and has installed an in-house generator and solar power. Internet access however has been affected. Decades of under-investment and neglect will do that. Hence the lack of blog posts.

If we haven't been lazing by the pool, we have spent the last three days exploring the island further on the scooter. Not doing anything too special - just enjoying pootling about. Much to the dismay of my poor back! The only time the electricity directly became an issue for us was when we weren't able to eat at a recommended restaurant. It's the locals I feel sorry for and the inevitable wastage of food from fridges and freezers.

Aside from championing reliable energy sources, stand-outs from the last three days have been;

- the scarey, OCD waitress we met at one restaurant.
- the butterfly sanctuary that was literally someone's garden.
- the small friendly villages of the mountain region
- Cantabon cave and me turning back as it was too perilous for me. A wise move according to Mat as he found it quite challenging.
- The lovely staff at our resort.

Thank you Siquijor, you've been seductive with your charm and all round general niceness!

Siquijor - firefly fanatics

Thurs 8th Jan

When Spanish sailors first landed on Siquijor, they were astounded by what they thought were flames in the night sky and so named Siquijor 'Isla del Fuego' (Island of Fire). They were obviously not flames but actually thousands of fireflies.

Having never seen fireflies in action until this evening, I would probably have told said Spanish sailors to get a grip but when you get a group of fireflies darting up and down at speed, they ARE like sparks from a fire!!!

Seeing the fireflies flying about this evening was genuinely one of the most wonderful things I have ever seen. I could have sat by that tree and watched them for hours. Coupled with a clear sky and no light pollution, the stars were twinkling away as their backdrop. It was so magical.

Even more remarkable is where we saw them - essentially someone's garden! The 'firefly sanctuary' came about because the lady who bought the land noticed them while planning her garden ans so she has created a habitat to encourage their growth as a labour of love. She was SUCH a wonderful and interesting person to talk to we are going back in the daytime to a). see the amazing garden in daylight b). see her face properly as it was really dark when we were talking to her!

Aside from the excitement of the fireflies, today has been pretty low key. Mat went for a couple of dives in the morning and I had the best all body massage of the trip so far for the princely sum of £7 at today's exchange rate.

We scooted off to Siquijor town in the afternoon for a 'merienda' snack of 'halo halo'. Mat also got a hair cut and shave where I was pretty sure one of the ladies sat on the bench with me waiting was being rude about me. They speak Visaya in Siquijor instead of Tagalog so I really didn't have a clue as to what she was going on about. Maybe she could see me throwing disdainful looks at her son who was being a brat playing on the barber's chair being a H&S risk and she wasn't telling him off. I was too busy looking out for Mat who had a cut-throat blade being used on him and a brat not playing nicely 2ft away from the barber...

It also full on rained today! It's still hot hot hot but it was like being back in England for a split second!

And finally, athough the food at our resort is very good, we thought that we would venture out somewhere different for dinner. And different we got. Mat got served his dinner..... in a shoe!! It was very tasty but we're still bemused as to why Mat had to eat his rice around a stillettoe .....