If you can't say anything nice........

.....Don't say anything at all . I've started an update several times but it's come out all sulky and a little angry , so I've scrapped it . Not to keep my bad moods and feeling sorry for myself from my friends, more just because I couldn't bear the sound of my own typing voice. Don't for one minute think that I'm "brave" or "coping so well" , it couldn't be further from the truth! I really do appreciate those of you who've kept up with little encouragements despite my silence....this is a long old road and I know how crazy life gets so being remembered by you guys is huge . Thank you .
 Since I last wrote , I headed back for my 4th and final ( Yay ! ) chemo....full of questions again for the prof...some of them I would be asking for perhaps the third time as he has that knack that clever people do , of not answering my questions , but somehow I only realise halfway home that I still don't have an answer. I'm quite sure he isn't avoiding them on purpose , his brain just assumes more things than mine .
Questions like....why haven't you scanned my other breast,,..I mean , what affected the left one also affected the right , surely? And , why haven't I had baseline body scans..how can you say "M0" ( zero metastases) without having a look ? Oh , and what about my axillary lymph nodes? How about my bone density if I have a family history of osteoporosis and you're suggesting oestrogen blockers? How do we know if chemos working?
To be fair , the prof has never grown irritated at my questions , but , has just never answered them , or answered them well enough to cross them off my list .
I have tried to see Dr Heslop on my previous visits ( highly recommended , lady doctor) but she's been on leave or at a conference . So I had an appointment with her scheduled for after my 4th chemo.
I swanned in for chemo#4 , only to be whisked off to see the prof because my bloods were too low again ( what?????? all that spinach for nothing ?) Whilst he confirmed that I was otherwise well and ready for chemo , he did my routine exam while I was there...and came up with a swollen armpit lymph node...on the same side as my lump . Pffft. No doubt caused by my kids having flu etc...but you cant leave it in a lady in my "condition". Nor would I want them to . So , instead of my second opinion with Heslop , I was in surgery , having the node out and examined under a strong microscope . I only had to delay my trip home by 3 days , and managed to score a lovely, blowy walk on the beach and a therapeutic catch up with my gorgeous cousin Lynne while waiting to hear that it was , all clear . Only then could I celebrate the end of chemo woohoooooo !
I made it home in time for Jon's business' 20th birthday celebrations , and what a special weekend that was . It did me such good to be swept up in the festivities and to hang out with lots of old friends , and some new , all of whom have been huge support to Jon and I . Jon , in his understated way , makes it all seem like he hasn't been working for 20 years...just having fun !
Mostly I was bursting with pride for his able staff , especially the long termers , who handle tourists day in and day out, and make them all feel like they're the first ones ever . I floated around for a few days after that .
And then.....flew back for radiotherapy ! This time , Jon and the kids have joined me . I have had moments when I'm not convinced that's such a good idea , as all the SA kids are at school , and the adults working...it can be a bit dull for them all . But , we have used the time to visit some senior schools in SA , and start getting our heads around the idea .
Radiotherapy is 23 daily sessions , one each week day , with the weekend off . All in all , just over 5 weeks . So far , my food and drink tastes weird , and my armpit's a bit stingy , but I'm managing to drive myself the 1.5 hrs each way every day , except for two days a week when I stay over at Greta and Tim's in Empangeni...Its one of the perks of this saga , bonus time with gorgeous family . Today I'm 9 radio's down , 14 to go .
Did I tell you that my hair never fully fell out with chemo ?  But , it turned silver almost overnight and I chopped it short because the thinning looks less noticeable then . After three people insinuating that I had grandchildren (it's so rude !) , I asked Zoe to dye my hair....ugh......I have regretted that ever since . Its the ugliest brown....dull , ugly and yuk . Not Zoe's fault at all , I bought the dye ! But I've worn a hat more since then than ever before.........
I will fill you in on my second opinion results another day...I need a break from all this serious stuff . Love to you all xxxxx

full time job

It turns out that the sisterhood thing in cancer , breast cancer especially , is very strong . I really feel for any man who'd be unlucky enough to be one of those few percent that get breast cancer...it is such female domain , with deep emotional sharing and frank heart felt stories . I'm not very good at being open with all that stuff , with strangers , but the few people I've met "in the same boat" who have clicked with me have been very special . It's a universal truth that there's a unique insight you get only by travelling that particular road yourself . However , I have a darling friend  Leyla . She's one of those rare people who wants so wants to understand how her friend feels , that she doesn't need to have actually walked the road...she just gets it because she cares about me and wants to get it . Pure gold . 

She bought me my whacky cancer manual , entitled " Crazy Sexy Cancer" . It is crammed full of non cheesy , non "smug cancer survivor" , cheeky , honest and seriously helpful advice . Like , where to find wigs , how to wash during radiotherapy , how to organise your medical file and insurance claims , how to be honest with your kids without freaking them out , and how not to play the cancer oneupmanship " oh but I'm a stage 3 and you're only a stage 1 , pfft , walk in the park ". To that approach , the book retorts  " Cancer is cancer . Its ALL awful . Be nice ". Sounds like most things in life , if you ask me . Loads of lovely chapters on real life things you face , during and after cancer treatment.

Anyway , back to that jolly insurance claim thing . Hmmm . Living where we do , I luckily didn't have a tough decision between having treatment here or "there" . No decision at all. Chemo patients in Uganda DO have weight loss . A LOT . They have no radiotherapy because the only machine in the country has been broken for two years . They form the left hand side of the bell curve in survival rates . It's definitely sobering to consider that , as much as I dread chemo , and am not looking forward to radiotherapy , I'm LUCKY to have them . In my community , people who have regular mammograms and access to needle biopsies of low grade tumours in time to treat them with any realistic hope, are unheard of . I'm not going to be cheesy about privilege or good fortune , but just know that it isn't lost on me . 

As a family we have disaster health insurance cover . Which means it covers us for evacuation to Nairobi/ Joburg , and treatment of disastrous things . In numbers , that means it only kicks in after we have paid the first substantial excess . That also means that my foggy chemo brain and I have to keep track of every charge for every blood test/scan/prescription/doctor consult/treatment and remember to send it on to the lovely lady in the Uk . Most people in South Africa wouldn't dream of carrying cash , so when I turn up to the accounts department with my bundles of R100's most of them have to call a supervisor to process the payment . 

In between , I have to book , pay for ( without credit cards...that weirdo cash thing again) and catch flights to and from here and Durban . Make sure I book a taxi driver to take me to the 148 km to the airport because its 2.5 hours each way in the middle of the night , and anything up to 6 hours each way at other times ( Kampala traffic cannot be described) So Jon definitely doesn't take me to the airport . 

Luckily , I can have my interim blood tests done here in Jinja . there is an awesome lab that sends even my tumour markers to Joburg , and gives me 1st world results . Saves me staying in SA for months on end . 

I make sure I walk my dogs almost every day , have a rest most days , eat well every day, and spend gorgeous time with my friends , kids and husband . 

After that's all done , the day's over . How do people hold down a job during chemo? Iv'e got huge respect . Just HAVING chemo is a full time job for me . 

P.s. Any of you reading this who HAVEN'T visited us in the 14 years I've been here ,  and can't picture what I'm describing , just be warned that I am going to MILK this to make sure you feel guilty enough that you have to come and visit us ! xx

Essential nutrients for cricket

I had my third chemo last Monday , 7 days ago . I have been eating like a health textbook since my last low neutrophil count , and I had a strange childlike pride when the Prof looked at my blood results this time and praised them highly . "Well , thank you !" As if I had studied hard for a tough exam and got top marks . Gold star material , I am .
Anyway  I left chemo in the usual brain fog daze , and spent the next few days at Haley's , with the nearly 4 month old Ethan for entertainment . Nothing like a squidgy smiley baby to put all other tonics and elixirs to shame . He really has got a million dollar smile .
The first few days after chemo , I crave tomato soup and salt and vinegar crisps . The anti nausea drugs mean that I haven't felt like throwing up ( except for one really bumpy flight home.....) but chemo definitely makes your stomach feel a bit tender....nothing too fancy for sure . In the "old days"  chemo could bring on a bit of weight loss ...but now , with these anti nausea tablets , there are ZERO welcome side effects . It has pretty much nothing going for it ! But seriously , I'm very grateful for the tablets.
Now that I'm home , my diet continues to be first class . The finest pawpaw , yoghurt and oat bran for brekkie (chemo wreaks havoc with ones digestion) , followed by boiled eggs/omelette , made from my very own uber organic eggs of course . Its all about the protein . Meat for lunch with broccoli or spinach or at the very minimum, a salad . Meat/fish for dinner with maybe a sweet potato and another load of "cruciferous vegetables" . Don't forget the green smoothie inbetween....kale , avo , moringa dust(eeew) , chia seeds , flaxseeds , frozen pineapple and some greek yoghurt all whizzed up into a very green, surprisingly yummy , sludge .
Except for tonight .
Tonight , I'm having a beer . And some chocolate . Neutrophils be damned . Sometimes mental health trumps you .

hair , hair , everywhere

The prof told me there was a 100% chance my hair would start falling out between day 7 and day 10 after my first chemo . Apparently its the evil Epirubicin , the pink bag of toxic liquid , that does it . So when I hit about day 17 with no noticeable loss at all , I started to feel a bit hopeful...maybe I would be that one patient who astounded the doctors . I think when you have long hair , especially curly long hair , the loss is a bit dramatic once it starts . Huge , emotional handfuls of the stuff . My hair loss started on day 18 , and by the time I hit my 2nd chemo , I was sure I'd lost half my head of hair but most people said they couldn't tell . One of the advantages of that Lister hair ? But since it was falling out of my scalp , and then not being able to slide down and out like it would be able to do on sleek , straight hair , it all ended up matting at the back like a big dreadlock .Yuk . The Lister family hairdresser was too far away in Adelaide , so I turned to the Dahl family hairdresser when I thought it was time for "the cut" . I will always be grateful to Greta for the way she did it , so calmly and gently in the kitchen at Haley's house , and for her making me feel like I had control over the situation . 

My new pixie look isnt too bad ! A bit greyer than I'd like , but hey ! Hair's still falling out(and getting all over my soap ! Argghhhh) , but either it doesn't seem like as much because it's short , or it has slowed down...I can't be sure . 

In the meantime , Haley's gorgeous sister in law Claudette had lent me her wig , now that she doesn't need it anymore . ( Her hair has totally grown back and looks beautiful . I'm told that it often grows back curlier and thicker than before.....good news for some people but definitely not for me ! ) But its a dark brown, sleek , straight wig and Jon decided I needed one more like my natural hair so he and I sat down and selected one off the internet , as best you can from a picture. Here's what we chose:

The "Cheryl Cole" , except we ordered it in butterscotch , a little blonder than this pic . It was duly delivered by the DHL man , and looked more "Heidi yodelling in the hills" than "Cheryl Cole" , but I planned to take it to the local hairdresser Natasha to have it trimmed and layered into a suitable style for me . However , Speedo the sausage dog took an instant dislike to "Cheryl" and the moment my back was turned , took her outside to murder her . I've spent a few hours taking twigs and leaves out of Cheryl , but the knots are taking some time . 

So I'm taking Cheryl to Natasha today , to see what she can do . I'm certainly not upset about it , if anything its provided a bit of light relief ! But I think that's because I can't imagine wearing it anyway...I break out in a sweat having the wig on my head for ten seconds ! The last time I wore a wig was an electric blue one to the Edinburgh festival...and even in Edinburgh I was hot , so I don't stand a chance on the equator ! 

I'm told that its totally normal to be anxious about hair loss . The thing that I'm dreading is looking like one of "them" . Those poor sick cancer victims with their tell tale bald heads . Right now , I don't look sick at ALL , and now that I'm two weeks post chemo , I don't even feel sick...just tired . 

My darling Dad arrived last thursday . It's wonderful having his steady, calming presence around , and we both head off to our respective beds after lunch to have our naps . Very handy ! He will stay while I'm away from sunday to thursday this coming week for chemo#3 , and then head home a few days after I'm back . 

Tanya will collect me from the airport and take me to have my day 20 bloods done , to see if I'm well enough for the next chemo . I'll stay with Haley , and Greta will meet us in Richards Bay for the actual chemo on the Monday . Even though I've done it twice now it still seems like a movie , and I'm not sure I'd be able to show up if it wasn't for those gorgeous sister in laws of mine . I try not to think about what it would be like to do this without them . Jon stays here with the kids in school etc. We have been very  open with the kids about all of this , because there is so much to be positive about and no need to hide anything . They seem to be handling it ok at the moment ? We are planning that we all go to SA together for the three weeks of radiotherapy . At least there will be weekends free to do some fun stuff , and it falls in school holidays anyway . 

I'm trying not to think too far ahead though . One day at a time , with some vague planning to try and try and put reins on this out of control situation. 

Its just not cricket

Don't ask me how a girl who's never really played cricket ends up with a blogspot name like this . And I cant even say its because I've ENDURED cricket because I actually quite like watching it...just not for 5 days. A one day game is pretty cool , with a few friends and a cooler box , and T20 even more fun , but not a five day game .
And that's what it looks like I've got here . As one of my friends from a non cricket playing country once said " Oh , so its a sport where you break for tea , you break for lunch , and sometimes you even break for a sleep !"
I'm breaking for a spinach smoothie .
This particular match sees breast cancer in the white team ( traditional 5 day cricket has, confusingly ,  both teams in white , but for my purposes I will have the medical team in white only) and Trish in the..lets see..not pink , that's too predictable . I was thinking camo greens browns and blacks but that's a little aggressive..I know they say this is a "fight" but I just don't have the energy for all that . So , today I choose purple snakeskin design . With cowboy boots . Why not . T20 even  has some wilder colours than that.

I've never seen myself as blogger . I'm always amazed by my friends who can write and put it out there for the world to see and have an opinion about . Hats off to you guys . And, breast cancer is so jolly common ( 1 in 5 up to 1 in 10 , depending on where you live in the world) that who wants to read another jolly blog about it ? Plus , this is dominating my family's life so much as it is, that the last thing I want to do is give it MORE attention . Except , that I've got so many lovely friends and family who live too far away , who really check up on me , and I appreciate you . So , this is for you .

So I'm day 11 since my second chemotherapy and 11 days until my next one . If the first cycle was anything to go by , this is when things start improving ...yay...but I still have no immunity and have to be careful not to overdo it , because my body needs all the help it can get to build up my white blood cells etc in time for that nasty stuff to knock it out again . I though I'd been pretty good about resting last time and was a bit cocky when I turned up for my bloods to be told my neutrophil count was too low for them to give me chemo . On my second chemo ! After all that spinach ? It was a bit humbling and of course it would be devastating to delay any of this , so , I've stocked up on movies ( thank you Zoe !) and am taking it pretty easy .

I've been replaced at school by the amazing Kari who picked up stuff that took me 6 years to learn , in like minutes :) . I'm so very grateful for her , but also a little scared of losing my identity and purpose without a job.....? There are some days when I couldn't imagine having a spare bit of energy for school , but today isn't one of them .

My Dad arrives tomorrow evening and I'm really looking forward to seeing him . And it will do him good to see me too , because I know he has been worried about me . Apparently , there isn't really much to worry about in the long term because it looks like we've caught this thing very early and the clever but not very kind doctors tell me there is every reason to believe that we will finish this thing off . It's taken me a while to get my head around how, if it's not something to worry about , why such aggressive treatment? This is how I understand it at the moment . My diagnosis was provisionally "T1CN0M0" which in most cases would mean a lumpectomy , and maybe hormones . T1C is the size...1cm to 5 cm .Small .  N0 means zero spread to the nodes . M0 means zero metastases , or spread to other organs . Turns out that was a provisional diagnosis and strictly speaking , we still don't have a full one . N0 should actually be replaced with NX , because the clever docs said that they couldn't check my nodes for spread since a lump located where mine was , right next to the sternum , wouldn't use armpit nodes , it would use the nodes under the sternum to spread , and we cant cut out those ones to check on them , so have to assume spread . M0 is still waiting until I can get round to all the scans needed to rule out spread . But in the meantime , anyone medical who has seen my provisional diagnosis is shocked that I'm having chemo and radiotherapy . However , the clever but not very kind doctors tell me that my histology showed an undifferentiated cell type i.e not a clear type of cell , so they have nothing in the histology and nothing in the nodes to predict this beast's behaviour on , and have to assume the worst . Finally , my mammogram and ultrasound in December 2015 were both clear , and this lump appeared in February . The doc didn't like that at all . So , we're going hard , but apparently this " belt and braces" approach is very sensible for someone as young as me (!).

I need to get out my head now so I'll continue this another day . Off I go to find some purple snakeskin fabric . xxxx