Life is a Rollercoaster (Just gotta ride it!)

Don't worry it's not another song, (although, Gemma, if you're up for it THIS one's yours!) No, I just thought I would write an interim blog whilst awaiting my "guest bloggers'" contributions to the "My People Blog"........and, well, I was lying awake last night (Steroid Insomnia..another song....????) after Chemo no. 48 and  felt I owe you a treatment update. (To be frank , it saves me doing a round robin newsletter thing, unless THIS is actually doing that?) Anyway you're getting one, if you read on, which is your choice, of course, no pressure at all...OK?

At the hospital last week, not at the bar, but drinking the aperitif they give you 2 hours before your CT scans!

Yesterday was my 5th session on this particular Merry--go-round, and it struck me that Life/Cancer/ Chemo are all like being on a Rollercoaster! And that then led on to analogies with other fairground rides. (3am this morning, remember). It sounded like a good idea in my head, but lets see what happens as I write it!!)..Still with me? Good children!

It's like this: Life is cyclical like the merry-go-round..birth, school, dating, marriage, kids, getting older,dying... kids getting partners,their own kids, school etc. etc. At some point we have to get off, If we're enjoying it, we choose to go round for as long as we can but eventually the ride, enjoyable as it is, comes to an end. Cancer and chemo can be like this too. Lots of cancers ARE curable and people don't keep going round again, by choice (unlike Life, it is inherently unpleasant, so why WOULD you?), but my particular cancer and the stage I'm at won't let me get off. I don't want to keep getting back on the horse, but I don't have any choice. If I choose to get off its because MY horse is being put out to the fairground carousel horse pasture.
Also, the Big Dipper ride can be like Life..the highs and the oh so lows. Climbing slowly to the highest point, then plummeting the depths at break-neck speed. Going through cancer and chemo is like a speeded-up version of this. You are constantly hoping for the next high, waiting, hoping that the next test results will show improvement, utter euphoria, sometimes for only seconds, when they ARE good, but plummeting down like a lead weight, when they are bad. Let me stress, its only like this after repeated treatments, because at stage 4,  even if everything looks great, the current chemo regime is behind you,  you know that sometime in the next few months whilst you're sitting laughing , strapped in safely in the Rollercoaster car, enjoying the ride with your friends/family, you KNOW that at the top of the bend comes the next terrifying view of the bottom curve of that ride. The thing is though, that you stay on it, because you can't get off. If you tried that mid-ride........!!!!!!!
Now I'm writing this, it seems a little lugubrious (LOVE that word..just wanted to slot that one in!)

But, think about the fairground analogy on other rides...the waltzer (obvious..living fast and loose, youth, fun, fearless spills and thrills, but sometimes you feel sick and you stop. When you're older, you just can't face it any more!). The Crazy House..uneven foundations, dark passages, shakiness! The Horror House.....dark thoughts, nightmares, what's around the next corner?????????BOO!!!!!
The Hall of Mirrors, my personal favourite..can make you feel tall and willowy or short and fat! Unsightly lumps and bumps you didn't know you had. Distorted facial features...thank GOD it's only mirrors and you're really Angelina Jolie or George Clooney. (substitute your favourite sex idol here...I'm not telling you mine, but it's not Anjie!!) So on and on we could go with the fairground analogies, but it's time to tell you why I've been on a horrible Rollercoaster recently and many times wanted to unbuckle and jump off, but obviously I'm not as brave as I think I am!

This latest treatment has been harsh. No side -effects are great and I can't really explain WHY this set are so nasty. It's just that it seems worse than the other 6 regimes I've done since the very beginning. I have aching limbs, feet, hands all the time, like flu. My stomach cramps for the first week continually. I have neuropathy in my hands and feet, pain and numbness, tingling like electric shocks (worst in the 1st ten days of the 3 week cycle). At the beginning it was hard to get more than an hour's sleep, because the aching limbs and the neuropathy(like any pain) are worse at night)......I am exhausted for about 18 days, but even on chemo days have to keep sitting down, walking slowly because I feel so tired and weak......
SO I had a BIG Rollercoaster free-fall on Wednesday, when  I got my Tumour Marker results. After 4 treatments, they had gone up...a lot! This doesn't (hasn't) usually happen(ed) when I'm on a treatment, so I really had a moment there when I was ready to unbuckle and get off the ride. However, it was a MOMENT (a few hours actually), because the Dr.s need to see your CTs as well to decide what to do. I called my lovely female  Oncologist,Dr. S. (My oncologist team will be in my "My People" blog, but not as contributors, as I haven't dared tell them about it!)
I asked her to pick up my CTs which I'd done the previous week. She called me after some time (seemed like being stuck at the top of the Big Wheel for an eternity),but told me the tumours in the liver are STABLE! They call this clinical benefit, which means the drug is holding them at bay for now and thats pretty good to hear! So..upshot is, I'm still on the ride..just gotta ride it ..until THEY tell me to get off. I'm getting used to this treatment and am handling the side-effects with (guess what? ) MORE drugs, , (Eyes Right, the drugs for the drugs drawer!)but I reckon I can stay on the ride for as long as it's doing some good. If it starts to churn things up(more tests will tell)  I'll be getting off, but going on a different ride..Hope it's the Hall Of Mirrors and I can look like my personal favourite celebrity and NOT like Anjelina!!

All for now, back with more guest bloggers soon. By the way, please comment if you have some much cleverer fairground ride analogies ( for instance I missed out Life's temptations..candy-floss and hot dogs!) or want to rewrite the lyrics of that memorable Irish ex-boyband member's song!  I know some people have had problems commenting. I think you have to post a comment with a name (any you like, Anjelina!) and then click on publish???? Worth a try and we'd love to hear more feedback. Is this "helping" anyone?? We hope so!!

 Bye, cup of green tea, then a snooze methinks zzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz!

My People.(Introducing my favourite Guest bloggers!)

The last blogpost told something of how Life has been changed by learning to coexist with that gigantic proverbial C-elephant in the room,but now I want to introduce the people (My People!)  who have made it possible. They are the people in my life who have lived "this" and as hard as it has been for me, I  also worry about how they have felt , coped, stayed optimistic through everything!They are few in number, and  of course, we have many other wonderful ,caring friends and family for whom I am eternally grateful , but "My People"deserve a special mention, a Jacqui Gong , if you like, because , after all these years they have not become desensitised or tired of worrying, or already written me off (as some inevitably do and have!).  THEY are my continued, unerring pillars of strength who hold me up when I falter, they are my rocks, upon which I am allowed to founder. They have been by my side (if only figuratively sometimes), for every step of this difficult pathway and have done and would do anything to ease my discomfort along the way. Just as importantly, they know the reverse applies.That's why I'm keeping going,for them, primarily, because I want to continue travelling as far along that road as I can possibly go!
I asked them if they would be prepared to contribute to this blog, and as usual, amazing human-beings that they are, they have stepped up to the plate yet again........for which I thank them , yet again!

FBUD
Fbud is the sort of best mate every girl should have. She is my SSbud (SoulSister!) She was, as she goes on to say in her contribution, which follows, there at the very beginning and has been there for me at every turn since.Her kindness, patience and generosity are boundless.Her sense of fun and humour are infectious.Her hospitality and attentiveness are second to none. She  is tall  and blonde with amazing, slim and toned never-ending pins  (how many Euros did we agree on Fbud?)No, she really is! When she used to come into the hospital on chemo-days, my Oncologist Dr.P couldn't take his eyes off her and her  (amazing,slim etc. etc...)legs and kept asking me about "My friend with those legs"! (But, it's ok, I can live with her tallness and her Top Model/Athlete legs, because she always makes (little) me feel good too!!)We confide everything in each other, enjoy the good times and smile through the bad...We talk for hours on the phone and  in person. We've never had a cross word. I don't know what I'd do without her. She's my Bestbud............Here's her side of the story so far........

Fbud's Frogblog (don't ask!)

In a weird and mystical way,Jacqui's cancer was the matchmaker in our relationship as BestBuds. Don't get me wrong, no way am I handing out plaudits to the Big C - would give anything for Jacqui to be cancer-free and be bestbuds with a  ski-ing, golfing, cossack-dancing northener of just under average height (tee-hee!)  but as Jacqui says ...Carpe Diem- what the... does that mean anyway ?? So, the story unfolds in this way.Its one of those gorgeous sunny days that make you feel privileged to be living in Greece (pre-crisis) .A group (flock,gaggle,stink?) of sweaty female tennis players sit down for coffee and a chat. As I sling my oversized tennis bag on the ground,it tips up, revealing its sordid contents. Hastily shoving back dirty tissues,spare knicks, nibbled twix bar (energy,right?), etc, I spot the business card of my gynaecologist. Having lived in Greece for longer than most of the girls ( see..i was washed up on these shores in a Moses basket!) , I decide to share my local knowledge and ask if anyone wants the name of a good multilingual gynae., totally not expecting Jacqui to say calmly that yes, she probably does need one since she'd just discovered a tiny lump..... FastForward (I know I'm copying you Jbud, but hey,you're the blog expert now !) six years on and Jacqui and I are well-established buddingBestbuds . It turns out we  have plenty in common which doesn't involve hurtling down snowy slopes or putt putt. We've been gym buds, we've shared confidences and references ( a dab of Tippex on photocopies of hers and I'm an Oxford grad- got the job !) , we've been on holidays together ,girls' nights out, drunk a lot and laughed even more. Then, crap of craps, Jacqui finds out that her cancer has metastasised! Radiotherapy,followed by chemo , just for starters and as Jacqui is now living far from the hospital, she comes to stay with me whenever she needs to. This is when we dive into deep Best Buddiness.............. But being Jacqui's best bud is never defined by the Cancer. I selfishly enjoy her company under any circumstances ,and shopping for wigs, lunching before treatments and bleary-eyed breakfasts after treatments are  all part of the fun,however warped that sounds ! Each time we get together ,I'm always blown away by how stylishly gorgeous she is, with or without hair and at her amazing ability to make life more fun for all of us who know her. Jacqui- you're simply the Best!

Life goes on!.........

I know...you are probably wondering why I've started this blogpost off with a photo of the Twin Towers on that fateful day almost 11 years ago??? Well here's a test for you(once a teacher, always a teacher!) , and I bet most people pass with flying colours! WHERE were you at the exact moment the first plane struck the first tower? It's one of those memories you'll never forget! That day is etched in most of our minds for obvious reasons. But what has that got to do with my cancer blog? Only a few of you know the answer to that!They'll get a gold star each for being swats!! The answer is : on 11th September 2001, I was hooked up to an IV in a hospital bed, wearing a "coldcap", receiving my first ever chemotherapy! In the room I was lucky enough to have a TV. Robert was flicking through the Greek channels to find anything worth watching.As he happened on a recognisable American scene, he paused. At first  we thought we were watching a movie..I guess we all did! But it soon became apparent, we were watching the second plane, crashing into the second tower and that it was LIVE coverage!! The rest is history........
I'm starting with this image, because what happened that day was completely devastating the world over. My having just discovered 2 weeks previously, that I had breast cancer, and following surgery, was now embarking on a course of chemo, was no less horrendous for us and our friends and family, but of course there is NO comparison. To me the image is symbolic of how terrible events are happening all over the world, every second of every day, but that there are also people like me with terminal illness fighting for their lives for their  partners, their children, their extended family, their friends every second of that same day. My point is that before, during and after these events Life must go on! I suppose that's why I chose this image, which views the Towers from a distance and has The Statue of Liberty in the foreground.She is the ultimate symbol of Life and the Force that runs through each and every one of us!

Cancer is life-changing. That seems like an unnecessary statement, but until it happens to you or someone you love ,those words have no real significance! I am going to try to explain how it affected me, my husband, my children, my close friends in a way that can only be understood by those who have lived it, day to day or week to week, month to month, but that somehow amongst all the fear and the anger, the frustration , the confusion, let alone the pain and the discomfort of multiple treatments, I/we have managed to maintain our optimism.It may seem to some like a form of denial, but it is a coping mechanism that has worked thus far.Life goes on!

Jacqui

I miss my old life! There, I've said it! I was a party girl!Ask anyone who knows me! I was the first up on the dancefloor, the karaoke AND dancing queen rolled into one! My party piece was a Cossack dance...the real deal!(You know , only one foot on the ground.)Hell, I could do a full lotus !I was physically really strong. I lifted furniture,climbed ladders, painted the house, stripped and varnished chairs and tables. Robert would joke that I could leave the retiling of the roof till later, if I needed a break! I was sporty...I played golf and tennis (not that well,but with oodles of enthusiasm!) , I worked out ,and my most beloved sport was skiing! I can't do any of those things any more. If I did I could break bones and cause myself weeks of pain!It isn't because of getting older, look at what Madonna can still do! It's just too risky now for me! Well ok...the karaoke I could still manage, but Robert has banned that in this house, and anyway,with a professional singer as a son it is considered the height of "cheese"!(Gem, can we go to one of those karaoke booths when I come to London?) To be honest I'm not really feeling the Cossack dance anyway at the moment. Since I feel grotty and fatigued for half of every year I'm just not up to doing those black runs either , even though there is nothing I would love to do more!
Cancer has changed my physical life in innumerable ways and this , in turn, leads to a change in one's philosophy of life. No. I'm NOT who I was even 5 years ago. There is a constant cloud hanging over my baldy head, because even when I'm "on a break" from treatments, I still have the worry of Tumour Marker Tests, CT scans, MRIs, bone scans etc. every month or so. I haven't been away from the hospital for more than 4 weeks in the last 5 years. THAT changes a person!
BUT.......and its a big BUT, I have used everything in my personal strength arsenal to combat the total invasion of cancer in my everyday life. Somehow, I believe ,that Life force I talked about, kicks in, when it's most needed and imbues even the smallest of pleasures with the ability to make me forget that I can't ski or cossack dance any more, but,what the hell.... Carpe Diem.!...I'm still here to write this blog!!!


To be continued.......................................................................

A song for Europe (and the world!!!!!!)

You may have noticed that it's all gone a bit silent on my side of the blogging front? I haven't been living the life of Riley (WHO was he anyway??), no , as you can imagine, haven't really been myself lately due to a certain pesky chemotherapy drug. (Abraxane* for those of you in the same lousy battered old boat as me). Actually, I'm thinking now I would happily change places with Old Riley, since he seems to enjoy such a rollicking good life!!

During my absence, I have kept thinking of blog ideas and they are now backing up. Since Gemma has just posted her detailed, informative, brilliant wig advice blog, and we've done a lot of banging on about hair, I thought it's time for a new topic. A change is as good as a rest, hey? The new blog topic will be about LIFE. The way cancer affects the lives of the sufferer and those close to them, how it has a way of changing people, but that life goes on as it did before, during and (sorry to be morbid..yuk!) after cancer.

(* Will tell you about all the different treatments in a special blog. It's important to know what to expect if you are prescribed any of them. (Apparently I have had them ALL!))


So this little (borrowed) ditty (thanks Macca!) is by way of introduction:

 ...OH blog-di, oh blog-da, LIFE goes on, Oh .....La la la la LIFE goes on!

Gemma's casting plays and films in London Town,
Barney is a singer in a band,
Robert works in shipping, then is homeward bound,
And Jacqui stays at home and does things with her hands!

Oh blog-di, oh blog-da, LIFE goes on, Yeah, La la la la LIFE goes on!

Jacqui's doing chemo now the cancer's back,
Gemma says "Come on, let's write a blog!"
Robert's there each day to keep his wife on track,
And life goes on because she has to feed the dogs!

Oh blog-di  (Etc.)

In a couple of months, Jacqui's feeling almost well,
Her kids will come and they'll all have lots to tell
About their lives...

Soon the summer's here and the barbie's on,
We'll all be having fun around the pool.
We will be so gutted when the kids are gone,
But  know their lives will carry on as on a spool!

Oh blog-di, oh blog-da, life goes on, Yeah!
WE all know lala......Life goes on!!!!

My family!

Hair today...gone tomorrow

So..... I am not doing chemo and I have not got a lovely shiny bald head (but quite frankly wouldn't mind not having to shave my legs every other day....I know the cost would be a little high here, but you know, grass is always greener!)

I do however have a big interest in all things hair / makeup. And I thought perhaps some practical advice about wigs might help some people out there that are doing chemo for the first time and are losing their hair and are terrified/full of drugs/tired/lethargic/overwhelmed (there are more adjectives I could come up with, but I don't want to bore you just yet!) I am obviously drawing on some of my mum's experiences here, but some of my own too.

First thing they don't tell you is that it comes out in clumps (The hair). And it strikes suddenly and when you least expect it, just like a ninja in the night. You wake up and the hair is in your eyes, in your mouth, up your nose....if there's a space to settle in, it will find it! I imagine it's how "Cousin It" from the Addams family would feel ALL the time. You won't believe you even had that much hair in the first place! It might not be quick so you could have patches that are hair free and patches that have long glorious tresses coming from them! I'd advise cutting your hair shorter before these patches start to appear so it's not so traumatic for you when it actually happens.

Mum says to be prepared and make sure you have your wig BEFORE the hair does its great escape. This time round, she shaved her head pretty soon after it started falling out. (By the way, any mother daughters out there should watch this video. It'll make you sob your blooming heart out, but it's beautiful and it reminds you how close the bond is between mums and daughters:
http://www.youtube.com/watch?v=k71yMr5YWjA&feature=youtu.be )

Anyway, you might not be ready for no 1 buzz cut as quickly as my mum because she'd seen herself bald before. If it's the first time you're losing your hair it's not an easy thing to go through, I think it's a huge deal for women and some women feel like their femininity is being taken away, but as you can see in the picture below, my mum looks beautiful and womanly and I think there are practical ways that you can help yourself to feel feminine and attractive without a glorious barnet.

So, back to wigs. I agree with mum about not buying them online. About 90% of the wigs you find online are being modelled by Raquel Welch! It's the most bizarre thing! Now, not only do we not all look like Raquel Welch (and as beautiful as she is, thank god we all don't! How boring would that be?), but some of those wigs (in fact a lot of them) don't even suit her!! I think if you have no other choice, then of course you will have to buy one online, but I would make sure it's as similar to your own hair type and style as possible so you will still feel more like you and it's not even more of a shock!

Having said that, different strokes for different folks! Some people (and i admire them) will use this as an opportunity to experiment with their hair in a way perhaps they never had the guts to before. One day they're Farah Fawcett, the next Jennifer Aniston, the next they're sporting a Demi Moore crop...the possibilities are endless! It can actually be quite good fun trying out different looks! Maybe you were a brunette all your life and you want to try out the theory "Blondes have more fun" (in the moments when you don't feel like you might vomit at any second) Or maybe you've always had curly hair, but longed to see what it would be like to have straight hair! Now's your chance!

When my mum lost her hair 6 years ago, I bought her a few different wigs from a market in Peckham (I was actually really impressed with the range of styles and quality and also prices!) One was black and short, one was reddish and longer and one was blonde and she actually quite enjoyed trying the different looks and seeing herself in a different way (and my brother and I taking the mickey and sporting them ourselves...as in the pic on a previous blog my mum did). Obviously I am not saying this is the most fun she's ever had, and I'm not suggesting you would prefer to have a bald head and try out loads of different wigs instead of having cancer, but I am saying that you can be a little bit light hearted about it. It is possible. And it might make you feel better, which is what this blog is all about.

If you are, however of the school of thinking that you just want to look like "you", I would advise going to a wig shop and actually trying some on. There are so many different types - synthetic hair, real hair, thick, fine, different sizes for different sizes of head, different partings in the hair etc etc. I would try on lots and really get one that you feel comfortable in and one that you thinks suits your colouring and perhaps is very close to your natural / usual hair colour.

A really good starting point if you live in the UK is the Wig Suppliers Association, who work really hard to ensure that the suppliers are providing wigs of great quality and are providing a good service to their customers http://www.hbsa.uk.com/wigs.html 

So the first thing is finding somewhere to buy the wig, the next thing is fitting it. Apparently there are all sorts of different types of cap sizes and ways of adjusting them. Some of them have ear flaps that can make you feel like Biggles if they're too big and if he wig's too big for your head or some make you feel like Martin Clunes if you try to push your hair behind your ears! I'd advise when trying on wigs to adjust, readjust, do all the things you would do with your natural hair and see which wig feels most natural to you. It's never going to feel like your own hair, but it should be comfortable if you're going to wear it all day!

Another thing nobody tells you is that you should go to get a wig cut!!!! You might not be able to find a wig in exactly the same style as your hair naturally was. According to my mum most wigs have way too much hair on them. It just doesn't look natural! Particularly if you're a person like her or me who have fine, silky hair. The best way to ensure you look like you and to ensure you look good and therefore feel good in your wig is to take it to a hairdresser to style it! Amazingly wonderful, unbelievably talented, celebrity and award winning hairdresser Trevor Sorbie (hope he reads this and I get a free hair cut!!) has a wig cutting service at his salons that I believe is free and he's started a charity that is there to help you with selecting wigs, finding somewhere to get your wig cut, what to expect with a wig, in fact, pretty much all the advice you might need is on there...EXCEPT what to name it! (See my mum's last posts)

Here's the web address for My New Hair (Trevor's charity):

http://www.mynewhair.org/Home.aspx

If you haven't got much spare cash, I am told that you can get wigs on the NHS! Here's a link I found that I thought might be helpful:

http://www.nhs.uk/NHSEngland/Healthcosts/Pages/Wigsandfabricsupports.aspx

Here's a couple of recent wigged pics of my beautiful Ma to show that you can get wigs that look and feel right!

More wig tips to come soon!!

Gem xxx