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Author Archives: daysleeper40
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:
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’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.
I enjoy photography. I can totally lose myself in it as a hobby and I love the creative side of it. I’ve been a ‘photographer’ for about 5 years now – maybe 6 – and in that time I’ve narrowed down my favourite subjects to macro, zoo and wildlife photography. This is fine, but it is also nice to branch out and try new things. In 2009 I did a ’52’ whereby a theme is drawn each week and a group of us all took a photo to the theme and posted it for critique. The results of that little venture can be found here:
It was hard work and looking back on some of the pictures makes me cringe a bit – but I really enjoyed doing it and got a great sense of achievement at the end of the year. So the following year I set myself a new challenge – an A-Z of animals:
I didn’t quite make the full set – but I think the quality of the photography had improved which made me very happy. Since these two projects I have taken lots of photos of zoo animals and pets, but I havn’t successfully finished any kind of challenge. I have set myself projects but they’ve always fallen apart. I tried to do a reloaded ’52’ in 2011 but only got 7 photos in before giving up – and I wanted to do a Local Wildlife project in 2013 but just couldn’t sustain it what with the chemotherapy etc. I didn’t even bother pretending to start anything in 2012. Lets just say I lost my creative mojo.To be fair I have had other things to contend with – but I don’t like failing at all. Especially on something I have set myself. So I have been a bit reticent to set myself any challenges this year – life is challenging enough! – but an email arrived in my inbox inviting me to participate in the Photographer of the Year competition on the forum Talk Photography. This is the same forum that I did my ’52’ with.
So I decided to give it a go.
Basically it is one photo a month to a specified theme and or style… I can do that right?
The themes looked ok.
12 photos isn’t too taxing.
Good way to get my mojo back surely…
So I am 2 months into this challenge and so far it’s been a bit of a mixed experience! Results are in for January and I didn’t do too badly. February’s picture has been submitted but it wasn’t great. Actually, the picture was ok, it is just crow-barred into the theme! One of the rules of the competition are that the entries cannot be displayed anywhere else until judging is completed – and judging takes about 3 weeks – so you’ll have to wait to see that one. I can show you January’s though…the theme was Nature and the style was Macro / Close up – you could choose to take your photo to either / both. I decided to try for both – and think a little bit outside the box. This is what I ended up with – it is called “A Titanic Force of Nature” and it was taken with a 90mm Macro lens:
It came 25th out of over 40 entries – so not a terrible start. Could be better but frankly, just doing something a bit creative was a win for me! February’s theme was Winter Landscape which has been a nightmare as all it has done in February is rain. I very nearly didn’t submit anything but decided I’d rather enter every month – even with a rubbish entry – than miss any. A lot of the other participants have said the same though so it’ll be interesting to see everyone’s efforts. March should be a bit easier – theme Architecture, style Monochrome – again, you can pick either or try to cover both. Not sure what I am going to do yet but we have a trip to London booked in a couple of weeks so I’m hoping to find something good to photograph there.
So far I am happy that I’ve started this project. I really want to improve my photography – I am very out of practice – and I am determined to see this particular project through to the end!
I realised today that it is almost 9 months since I had my bilateral mastectomy operation. I originally thought I would post a ‘6 months on’ update but that was basically the week before my implant swap operation in December so it seemed a bit redundant. I saw Smithers last week though and was finally signed off as essentially ‘act as normal’. I am allowed to do whatever exercise I would like and have moved on to just general check ups with him every 6 months. I’m still seeing the physio for a related neck / shoulder problem but that’s improving too so now seems a good time to look back and talk about how I feel about it all now the actual stabbing and chopping bits off etc has stopped.
So how do I feel?
Physically – I’m ok. The surgery in December was a lot easier than the original operation obviously but it did cause me some issues. I was not able to raise my arms above shoulder height for 6 weeks and also had to wear a sports bra 24/7 for that time period. Once I was free to move my arms a bit more I realised I had some mobility issues. Basically my left side is knackered. It is not surprising – I’ve had 5 operations and the left side was involved in all of them. I couldn’t stretch my arm up properly and to compensate I was sort of hitching my shoulder up. This has caused problems with my neck. Pretty painful and also has been giving me horrible headaches. When it got to the point I was up crying in the night because it hurt to lay in bed I decided enough was enough and called in the physiotherapists again. I initially saw the one who specialises in breast cancer surgery patients and she did wondrous things to my armpit which has massively improved the mobility issues. She then said I needed to come back and see her AND the specialist neck physio. So a week later I was back being variously pummelled by both of them. The neck specialist is great though. She did some pressure point stuff with my head which was horrific while she was doing it but has definitely helped with my headaches.
Other than that it has just been a matter of getting used to the change in my body. It is almost impossible to describe how it feels having bits of yourself hacked off and replaced with fake stuff. The new implants are more comfortable than the expanders were – but they still don’t really feel part of me. It’s not like I am constantly aware of them or in massive pain – in fact large parts of me are numb now – but depending on what I am doing it can feel very very odd. If I am using the muscles that have been moved around that is when it feels very strange and I am really aware of it – say if I am carrying something. I am hoping this will improve now I am allowed to do some exercise. I need to be careful though. The physio said that if I want to start going swimming I need to do just a couple of lengths and then revert to the ‘kicking with float’ initially – work up to doing more with my arms slowly. It is really frustrating but I know that doing too much too soon is a BAD idea and will almost certainly cause more problems with my neck so I will follow orders. What I actually need to do is break out the physio band things they gave me last time and start doing the muscle strengthening exercises every day. It helped loads after the last op so I expect it will again.
In terms of how the foobs actually look… well in clothes I don’t think I look like too much of a freak. I would ask other people but I don’t know if anyone would actually tell me truthfully. I have noticed a difference in how things like vest tops look across the foob area. I think it is because they are sort of individual blobs stuck on my chest – they don’t squidge together like normal boobs do and so the material has to stretch across the gap and sort of wrinkles. Probably no one else even notices but it has been bugging me. I need to go shopping for underwear really. I don’t need a bra at all in terms of support but it helps with the wrinkling and if I want to wear anything light you can see the massive scars through the material. I had to wear sports bras after my recent operation and I also have some of the comfort bras you can get everywhere now and a few normal ones from Asda that I got when I had the expanders – various different sizes! – but I don’t have any ‘nice’ ones. Smithers says he hopes the current foobs will last for about 10 years though so I think I can safely go shopping now for some fancier options. Maybe I will do that this week. Not really sure what to get. I don’t need underwire but non-underwire ones tend to be ugly. Like the comfort bras – MASSIVE thick straps. Not pretty.
Out of clothes obviously I do look pretty freakish. I have scars essentially where your underwire would be – about 6-7 inches long, and then also vertically up the middle from the bottom to where nipples should be but aren’t. The vertical ones have healed pretty well considering they have been opened up twice (I was pleasantly surprised after my op in December – I thought it would look far messier) but the ones underneath are pretty hardcore. They have healed well – they are just big. The scars affect the shape of the foobs too obviously – and as I said before you can see them through certain lighter clothes. I’m ok with the scars though. I know a lot of ladies really struggle with even their partners seeing them but I don’t have any issues with that. My other half doesn’t seem repulsed and I don’t want to hide away from him. In a way I’m quite proud of my scars. They remind me of what I’ve done to protect myself and I am quite proud of myself for the decision I made to have the most extreme surgery I could even before I knew my genetics results. It was not an easy decision at all but I think it was the right one for me. I remember receiving a mastectomy information pack after one of my appointments with Smithers. It was when I went back towards the end of chemo to start talking about it again. I took the info pack into the toilet to open it in private and ended up on the floor just sobbing and rocking. It was a low point. Obviously I had known for months at that point what I would be having but there is something about seeing it in black and white in front of you that really makes it feel real. Didn’t help that I was a physical and emotional ruin from chemo either… but I digress. The point is that it was a horrific time but I didn’t take the ‘easier’ option of trying the breast conserving surgery one more time – and I am proud of myself for making the tough decisions when I was dealing with so much already.
Which I guess brings me quite neatly on to my mental state about the whole surgery side of this madness. I don’t really know what to say about that. I’m generally ok but I am definitely still dealing with the experience. I find myself thinking about it a lot at the moment. For instance the other night I could not sleep and I was essentially replaying the days directly after my mastectomy operation. It is still very vivid in my memory. I remember the horrible experience of going back to surgery for the hematoma and how I felt the day after that when I was so weak from losing all the blood. I remember having multiple blood tests a day and how badly my veins deal with intravenous antibiotics. I was driving along in the car the other day and randomly started thinking about why intravenous antibiotics hurt so much and remembered that the tubing they used for my PICC line was the same size they use for babies as that’s how delicate my veins are. That’s why it hurt. It is not like I want to dwell on these experiences but it is like my brain is still trying to process what happened. It was a huge experience to go through and even now it just seems really surreal but I do get these moments of sort of blinding clarity where I realise what has happened and frankly, it was fucking shit. One of the things I still struggle with is that by choice I have been private about my surgery. Very few people know the ins and outs. This is fine but there is a weird feeling I get when I’m around people who have no idea about my surgery. I don’t want to tell them – but I kind of do want them to appreciate what I’ve dealt with. It is difficult to explain, but it just feels wrong that they could have no idea about this massive experience I have gone through.
Another element is intimacy. I’m not going to say much about this as I think my other half deserves a bit of privacy – but it has obviously been something we’ve both had to deal with which has had its challenges. I also struggle with the fact that obviously I would never be able to breast feed. This is dwarfed by the fact I am probably infertile though so it’s not something I dwell on much.
It has also really affected my confidence too. I am very up and down. Partly I feel like I have handled this massive experience so why the hell would I worry about trivial things. Partly though I feel really socially inept and self conscious. Throughout the whole thing I have ended up making my world smaller – even more so after the surgery than chemo because I was off work and home alone. Now I am back at work basically full time and physically recovered I am trying to expand my world again but this has its challenges. I’m working on it…
So I think that is everything covered. I am obviously really happy that the operations are over for now. I could have elective surgery to have fake nipples created but I’ve decided not to bother with that at the moment. It would mean another general anaesthetic and more recovery and I’ve just had enough. Maybe later I’ll change my mind but I think I’ll give myself a bit more time acquainting myself with the current foobs before making any changes. I’m also not sure how I would explain that to my boss. I don’t want to talk to him about nipples. I think I would just have to say I needed revision surgery! I am however also pleased that I am going back to see Smithers for a check up in May though. He and my oncologist are like a security blanket. I will see them alternately every 6 months – along with the geneticist and gynaecologist in between. You’d think I would not want to see them but in a way it is reassuring that these people are on my side. There is no point pretending it is all over because it just doesn’t work like that – and seeing Smithers always makes me feel a bit better. He is a wonderful man and I can’t thank him enough for what he has done for me. No one would want bilateral mastectomy but if you are having to – I can highly recommend his skills… and personality. What a legend…
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…
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…