47 Days

So here is the post I never wanted to write. It is 47 days since my amazing, kind, funny, vivacious big sister died. I can’t even begin to tell you how this makes me feel. I had been watching her fade for a long time but the final week was exceptionally difficult for everyone. I do feel very lucky to have had those final days with her and to have been able to say some important things – but when it gets to the point where you are counting how many seconds it is since your loved one last breathed things become a little oppressive.

Let’s be honest – in a way it is a bit of a relief to come to this end point. For Jo as much as anyone – she has gone through so much with such good grace. You know when people talk about those suffering from a disease being inspirational. Well my sisters attitude to life has always been inspirational. She was a fabulous person before she had cancer and never lost that. It wore her down though and now I look back at photo’s I realise how long it had been since I saw her real smile. So much stress and pain. So sad. So sad for my brother-in-law and their two children too. I wish they still had their mummy but I am happy they do not have to watch her suffer any more.

The funeral was a very difficult day but I salute my brother-in-law for the choice of songs. Jo entered to ‘Eye of the Tiger’ which sums her up perfectly. There were beautiful tributes from my brother-in-law and sisters oldest and best friend – and I did a poetry reading. I’m glad I managed to participate in a small way. In lieu of flowers we asked people to donate to CLIC as this would have been Jo’s charity of choice – and amazingly it is up the £8000. So proud of my big sister. If you would like to read the tributes or make a donation the link is below:

https://www.justgiving.com/JoannaPatrick/

I don’t really know what else to say other than I could not be more proud of my brother-in-law and niece and nephew for how they are dealing with everything. I will end with the poem I read for my Jo-Jo. I love you sis, miss you so much…

Feel no guilt in laughter, she’d know how much you care.
Feel no sorrow in a smile that she is not here to share.
You cannot grieve forever; she would not want you to.
She’d hope that you could carry on the way you always do.
So, talk about the good times and the way you showed you cared,
The days you spent together, all the happiness you shared.
Let memories surround you, a word someone may say
Will suddenly re-capture a time, an hour a day,
That brings her back so clearly as though she were still here,
And fills you with the feeling that she is always near.
For if you keep those moments, you will never be apart
And she will live forever locked safely in your heart.

I think I am qualified to comment…

I’m going to start with the important stuff. My sister is declining rapidly and has been given months, maybe weeks to live. I am going to set off to visit her in about an hour and I have little idea what to expect. She has been basically comatose for the last few weeks but seems to have improved slightly in the last couple of days. I would just like her to be awake for a little while so I can tell her I love her and give her a big cuddle. Not really much else I can do at this point. Not really much else I can say either.

So I am going to move onto a less important, yet related topic. This ‘Bare Faced Selfie’ Facebook phenomenon. It has caused some controversy and given my own diagnosis, family situation and mutated gene – I feel qualified to comment.

I have always hated the Facebook ‘Breast Cancer Awareness’ games that have been going around for a few years. You know the ones – “Post what colour your bra is in a cryptic cliquely fashion and giggle about it” – etc. Achieve fuck all and making cancer into a game is clearly offensive. That’s not my opinion – it is a fact. This particular social media phenomenon has at least done some good in the end. Money has been raised – I can see the positives. Maybe a few people even checked themselves and who knows – it could even have saved a life. I say ‘in the end’ because that is not how it started. In my newsfeed it started with narcissistic people posting pictures of themselves with an inane comment about ‘awareness’ followed up by a swathe of “ooooh you look fantastic… and for such a good cause too!” comments.

EMPTY. MEANINGLESS. GESTURE.

No mention of donating money. No mention of checking yourself or how to do so. The only thing they were raising awareness of was their own face.

It was only when a few people with brains and compassion responded to this by posting pictures of their donation to cancer research – and pointing out to the hapless social media sheep that their ‘gesture’ just might be a little bit offensive – that the tide turned. Of course now a lot of money has been raised and that is a great thing. I still find the concept of a ‘bare faced selfie’ very confusing though. What are we trying to say here – that going without makeup on means you are showing some kind of solidarity with people who have breast cancer? That you are showing the same kind of vulnerability caused be chemotherapy and having great big bits of yourself carved off? Believe me – it doesn’t even come close.

Now that I look a bit more ‘normal’ I am able to shrug off this kind of thing but for all the people in the middle of chemo this last week must have been torture. Picture after picture of their friends bemoaning how shit they look with no makeup on. Really? Try having no eyelashes, eyebrows, or hair (granted ‘only’ 75% of mine fell out). Try gaining 2 stone in steroid water retention so that when you press on your leg it leaves a massive dent until the fluid fills back in. Try having most of your nails turn black, lift from their nail bed and fall off. Try having a massive swollen red face and big red burns on your hands that then crust over and look like you have leprosy. Try not sleeping for 5 days and see how extravagant the bags under your eyes are then. Try having MASSIVE scars on various parts of your anatomy…

… and now you want me to post a selfie with no make up on? Good job I’ve got all that chemo / surgery experience – I should just about be able to cope with people seeing my ‘bare face’. Tell you what – I think I will just carry on with my regular charitable donations and forget the social media crap.

I can completely recognise the good that has come from this campaign – but I don’t think the end justifies the means. There are also some glaring issues… the main one for me being that this seems to have been a women only event. No indication that breast cancer impacts men too. I don’t just mean because of their partners having breast cancer – no mention that men can get it too. If anything needs more ‘awareness’ it is that fact. No suggestion that men should check themselves and / or donate… nope… just the ones wearing make up please.

I could go on about this but I need to go and see my sister now. I guess what I most want to say is that although giving to charity and raising awareness are good things and people clearly have good intentions – that doesn’t mean you can trample all over people’s feelings to achieve them. Next time one of these games / memes pops up – just stop and think how it might affect the very people you are trying to help.

Wish

So here we are on New Years Day 2014.

I have been very neglectful of this blog in the latter part of 2013. I’m not sure why really as it was helping me through what has been a somewhat tough year. I suppose after I went back to work in August after the mastectomy operation I wanted to just try to get on with things. I didn’t have too many cancer related appointments for a couple of months and I was just trying to get to grips with life again. Long story short – I’ve found this pretty tough. Looking back at my posts I can see how I was trying to get away from the cancer related stuff but it is just omnipresent in my life now. Then in the last month or so, things have degenerated rapidly. Since my last post my poor poor sister (who is the aforementioned close relative who also has breast cancer – I don’t think there is any point trying to mask the identity any longer) has received the news that her cancer has also spread to her brain. She found this out a week after my foob swap operation, having had a funny turn and crashed her car on the way to her pre-chemo (due to cancer spreading to her liver) blood test appointment. You couldn’t make it up could you.

She went downhill in a scarily fast fashion and spent a week in hospital being pumped full of steroids and anti-seizure medication. I visited her in the hospital. It was awful seeing my usually vibrant, happy big sister so obviously unwell. That’s probably the biggest understatement I’ve ever made. It ripped my heart out, threw it on the floor and stamped on it. It wasn’t just seeing her so unwell – she has improved a lot since that day as I knew she would given the right drugs – it was knowing that at some point she is going to go past that point and not come back… and there is nothing I can do but watch. Again.

I’ve done this before with my dad – I know how it ends.

She will be having targetted brain radiotherapy starting tomorrow. Happy new year sis. Yes, that was sarcasm.

Obviously we all hope the radiotherapy and chemotherapy work as well as they can – but the uncertainty of it all – well, I have been finding it a touch crippling. My brain is really struggling to come terms with the whole situation and I veer from “she’s not dead yet” weird optimism, to absolute terror that the same will happen to me, to general fury… and then there is the empty, numb feeling that is I think my brain deciding to opt out of life altogether as that is the easiest option.

This sounds incredibly trite and unimportant – but it’s got to the point where I can’t plan anything either to try to lift myself out of the empty numbness. She asked me the other day if we still plan to go to Florida in 2014. How do you answer that when what you’re actually thinking is “No – because there is no chance we will get insurance to cover the fact I have cancer and you have stage 4 cancer and are quite likely to die this year”. Going by the last 3 years, whenever we try to do something nice someone either gets diagnosed with cancer or dies, so it is clearly tempting fate to spend about £6000 on a holiday of a lifetime without insuring it. I know that shouldn’t be important – but realistically it is and I am just SO fucked off with cancer intruding on everything like it does. Maybe it is just me, but we have booked a couple of nice things to do in the next few months (Mark got me tickets to Matilda and Country to Country for christmas and I’ve got mum and Mark Derren Brown tickets too) and it is really difficult to actually commit to anything and just look forward to it. Always have that horrible ‘tempting fate’ feeling that makes me just want to not bother.

You can’t live like that though – and I also have this guilty conflicted “I’m not the one that is dying” (See – tempting fate again. Probably shouldn’t say things like that) feeling that means if anything, I should be seizing the moment, appreciating what I have got and throwing caution to the wind. Not sure I’m explaining myself very well here – but suffice to say I have a lot of confusion about it all.

I just wish I could do something to help her. Failing that – I wish for an end to any pain and suffering she is, or is destined to experience. Whether that is by the treatment working, or the unthinkable happening. I wish for the process to be the least painful it can be. I think I will stop talking about it now as I’d quite like today to be a good day with Mark and not end with me in a pit of despair. If I think about things too much that is exactly where I will end up.

SO – onto other topics. Christmas day was actually lovely. We all made it out for Christmas Lunch and it was just a good, relaxed day. I laughed lots and managed not to cry at all! I have been back at work this week after my foob swap op and am taking on a new role as one of my best friends at work is leaving. I am quite sad to see him go – and I’m actually quite intimidated by taking over his role. I will also have to cover my old role for the next month or so too. I’m not sure what made me think I needed another challenge in life tbh but I guess this is an example of my actually throwing caution to the wind and saying “why not?!” when perhaps “No” would have been the more sensible answer. So you can now call me a ‘Operational Planning Manager’ and I can start a new program of ‘fake it till you make it’. Wish me luck!!

In terms of 2014 – I basically ignored New Years Eve as much as possible and I’ve never been one for resolutions. I think I have a pretty good handle on what is important and what isn’t now. I’d like to lose weight and eat better – but that’s not really a resolution. Once Smithers says I am allowed to exercise again it should just happen naturally. One thing I have semi-committed to is a Photographer of the Year competition on the photography forum I frequent. I would like to get my creativity back and start caring about something that has nothing to do with health or my family – and photography is the obvious choice. I will write a seperate post about it but the competition is basically 12 monthly pictures to a specified them and/or style. Last year stupid cancer / chemo / surgery got in the way of my planned photography project so I’m hoping one photo a month is more than doable this year. Again… wish me luck!

So I think instead of resolutions and “things can only get better”, I am just starting 2014 with a few wishes…

Hello Stranger

So clearly I lied when I said I would be doing more regular updates. Sorry about that!

Lots and lots has happened since I last posted – some good, some fucking awful and some foob related. I’ll start with the good – we moved house at last! Hurrah! Brought a lovely 2 bedroom house with a conservatory and nice little garden and officially completed on it on 21st November. Obviously this means we’ve been mainly packing and unpacking for quite some time but I actually think we’ve been pretty organised and productive. We had to be really as I had the second stage of my reconstruction surgery booked in for 5th December – more on that later.

Sadly we’d not even been in our house a week before cancer came to fuck everyone off again. Remember my close family member who also has breast cancer which had spread to their bones? Well it has now spread to their liver too. This is fucking awful news. Cancer spreading is never good and this takes her further into the “not curable” category… and lets be honest about this. Not curable is a nice way of saying terminal. I’m not trying to be over-dramatic and I will never say that to her unless she instigates the conversation – but deep down that is honestly what I am thinking. It is not a nice thought. She now has to have another course of chemotherapy and obviously the hope is that this stops or at least slows down the spread. Another 6 months of poison for her – on top of all the other treatment. I would be fucking furious. I think she is. I wish there was something I could do to make things better but there isn’t.

There is also the totally selfish side to this. You are supposed to ‘move on’ from cancer – I think I’ve spoken about how this is not so easy in a previous post. It’s even more difficult when you have someone you love being repeatedly attacked by the fucker and you know exactly what people don’t like to think or say about breast cancer – it does kill people.

I know the popular opinion is that it is pink and fluffy and one of the ‘better’ cancers. I’m here to tell you it’s not always like that. Some people don’t get better. I also think that most people don’t realise that you don’t go into remission with breast cancer. It can come back at any point to ruin your world again. For the majority of people, thankfully that doesn’t happen – but there is always going to be that fear. What I’m trying to say is – I’m having to deal with this fact the same thing could easily happen to me. I can’t distance myself from it because I’m watching someone else going through it. I’d love to ignore the fact it could come back and just tell myself that only happens to ‘other’ people – but it doesn’t, it happens to my family and in a way I feel destined for the same path myself. I’ll be honest – I’m not sure my brain can cope with all of this. I’m not sure how to describe how I feel when I get more bad news these days. Just sort of numb to life. Nothing seems all that important… but then I end up feeling guilty as I should appreciate what I’ve got. It eases off after I get a chance to process the bad news but then there is still this element of just going through the motions. In a way I feel like I did when dad was diagnosed – essentially waiting for the inevitable to happen. That sounds melodramatic and brutal but it is true. This is all very difficult to articulate so I will stop trying to now.

Onto a slightly more positive topic – foob swap… had the second stage of my reconstruction and am now at home recovering. This is where my surgeon has swapped the expander implants for silicone. He also did a bit of ‘scraping’ to rejig them a bit. Not nearly as hardcore as the original surgery but I do think my body is protesting at 5 surgeries in just over a year plus all the other lovely treatment. I’m ok – just sore and a bit feeble. Obviously I’m not complaining though as other people are having to start chemo all over again…

September Trash…

It’s ok, I’ve put the misery in a box for now… this post is all about inane girly related stuff instead. How would you like to see my trash? These are the things of note that I used up in the month of September. Apologies for the quality of the photo’s – I had to take a half day off work last week to rest as I have been absolutely exhausted and I took these just before literally keeling over and falling asleep in the middle of the day. I think it shows!! I never sleep during the day – I was a tad tired…

First up is the hair stuff:

‘Fast’ Shampoo –
My mum got me this after I finished chemo – it is supposed to make your hair grow quicker. I’ve used up the shampoo but still have the conditioner on the go. To be honest I have no idea if it has made my hair grow quicker or not as this is all I had been using after chemo. My hair has always grown pretty quickly so the jury is out on how much impact this has had – but it is fine as a shampoo regardless. Not sure it’s worth the hefty price tag – apparently there is a shampoo bar from Lush called ‘New’ which is a bit cheaper and I’m told it is effective. Maybe I’ll give that a try next.

TRESemme 2 in 1 Shampoo –
Gonna be honest – this bottle is humungous and I’ve had it for AGES. Since before chemo when all I was allowed to use was Simple brand hair stuff. Again it was fine – good value but I wouldn’t rave about it. To be fair, I am yet to find a shampoo that I would rave about! I’m quite relieved it’s finally used up and I can move onto something new.

Hair Dye Conditioners (Nice n Easy & Garnier Nutrisse) –
I seem to be perpetually dyeing my hair these days. I prefer the Garnier dye to the Nice n Easy – leaves my hair feeling nicer and covered all the whiteness better.

TRESemme Heat protect spray –
Had this for an age too. In fact I probably got it with the shampoo. It’s the best heat defence spray I’ve used in that it does actually seem to make a difference. You don’t feel you’re just putting it on because you feel you should like with other ones I’ve tried. Would re-purchase.

Moving onto body related stuff:

Boots Extracts Cocoa Body Wash –
LOVE this stuff. It smells divine – as do all the other ‘flavours’ in this range. I will be going to boots to get some more Extracts products this week I like it so much!

Soap and Glory Flake Away –
As body scrubs go, this was just fine. It is pretty effective but doesn’t smell as nice as the ‘Breakfast Scrub’ from the same brand and isn’t moisturising like some others I’ve tried. I liked it, but I’m not sure it’s worth the price tag to be honest.

Champneys Citrus Glow Body Scrub –
This was a bit odd. I thought I liked it because it felt really moisturising – but then I realised that it felt like that because it was leaving a sort of slimy film on my legs. It smelt pretty good and exfoliated well – but the slimy film was a no-go for me. Would not re-purchase.

Nivea Double Effect Anti-perspirant –
Liked this. Did the job and smelt nice. Not much more to say really!

Vaseline Active Fresh Anti-perspirant (compressed) –
I got this and basically the same thing from Sure to carry around in my bag. As I am such a sweaty mess with my hot flushes it’s nice to have some back-up and because they’re compressed they’re a good size for toting around. This one was a bit crap though. It seemed to run out really quickly – and it’s not like I was using it as my every day deodorant. The Sure one is still going strong so I think I’ll steer clear of Vaseline deodorant from now on. It smelt ok and it did work to be fair.

…and that’s the lot. I’ve also used various run of the mill body washes but nothing worth a mention. The Boots Extracts stuff is definitely my favourite. I wish they did shampoo and conditioner – then my hair could smell delightful too!!