First chemo – coming at you

27/11/18

Last day at work before first chemo and I got the best card – ‘This is shit’, and it truly is. I also got a wonderful, thoughtful present – a set of noise cancelling headsets which would help with the chatty chemo nurses! I was so touched by the message and sentiment. Its amazing what people do for you and the depths of peoples emotions and how they have reacted to this cancer and I couldn’t do it without my army behind me. It might be a small army, but they are my army and I love them all.

28/11/18

Its chemo day! We have a later start as take the cub to school rather than launching her out at breakfast club. I feel a bit exposed being there as I am the stranger at the gate. The last time I did this was when she first started school a year ago in Reception and now she is in Year 1 full of confidence and sass. I feel like everyone knows and I don’t want them to feel pity for me. The man cub then treats me to a coffee as we aren’t due in the hospital until 10 and I feel its going to be long day. We also dropped into the chemist to get some paracetamol as I’d read that it helps with cold capping – still haven’t decided though – and the lovely sales assistant advised me not to take more than the recommended does of eight tablets in twenty four hours! She doesn’t have a clue how many drugs are going in my body today. We chuckled on the way back to the car.

Once we arrived at the hospital we waited until 10.30 to go into the ward. I spent a good fifteen minutes of that time laughing at a sign six foot up on a blank part of the wall, in the smallest writing advertising that this was indeed a Waiting Room. It’s the small things that keep me entertained!

Once in the chemo unit, I can’t describe how impersonal it is – it is literally a waiting room of folk at various stages of their chemo, finding a seat and taking up a position with the drips in arms. You wouldn’t want to talk about anything personal – theres ten other people sat within earshot doing all they can to listen. The nurses on the ward are all lovely, but it doesn’t provide me with any comfort at the crazy time.

I was given a humongous anti sickness tablet which had to be taken before treatment could start. Then a lot of paperwork was discussed around the number of drugs I was about to take. Followed by agreement that I would cold cap. I made that decision there and then. I might not have bothered had I known the faff that was about to ensue!! At least with cold capping I was in an area of the room that was more private and not as easily overheard. It was a good job as I got conditioner lathered on my hair (to keep the cap stuck to my head apparently), then three nurses and twenty minutes later we still didn’t have the bloody cold cap on my heard. It’s a weird contraption, mix between a swimming cap of thick rubber and a jockeys helmet. But they couldn’t get the sizing right for my head!! I did start laughing hysterically at one point. It was maybe an omen. Devastatingly, I couldn’t get the headset to my ears

The kicker was then the timings. I had to sit with it on my head at minus four to six degrees for thirty minutes pre drugs going in then ninety minutes after the drugs had gone in (which in itself would take half an hour). At that point I sent the man cub into town. We were both bored and there was no point both of us being bored! Those first thirty minutes went quickly – and then Julie started with the six enormous syringes (two lots of red ones which would mean red pee apparently! Good job she remembered to share that nugget with me). Once the drugs had all gone through the drip, I then sat for the longest ninety minutes of my life. My head was so cold I started to shudder and couldn’t even talk straight – it was like the weirdest drunkenness ever.

Finally managed to leave the hospital at 3.30 and was starving! Ate like an absolute horse and don’t feel too bad. No sickness, but feel tired. I think its emotionally exhausting though. My bestie had me crying on the phone tonight when she was crying. I want a big hug off her.

But first chemo down, and I have this. And surprisingly I have laughed a lot today, its just what me and my man cub do – we laugh. He is definitely in my army.

Prep for chemo journey

26/11/18

Pre chemo appointment to get all the prep stuff done was today. I had the day off with my cub as the appointment wasn’t until 3pm and she had one of those off school days! We spent a lovely morning pottering about as per her demands (I know my place!),

After lunch out with the short hair with the parentals I left them to babysit while I was prepared to spend what I thought would only be an hour in the hospital. I mean how long can it take to give some blood and highlight again the side effects of the crazy drugs I am about to be pumped full of.

Arrived at 3pm and waited for the man cub in a flap as he was stuck in traffic, but we made it by the skin of our teeth. Seen by a student nurse to do the pre questionnaire bit (how much alcohol do you drink? – I’m sure if they compared my notes the lies would be obvious!!) and also do MRSA swabs – one up the nose (lovely) and one in the groin area (brand new territory for me!). They also took the all important bloods that have to be checked two days before every time to make sure the blood cells are at a safe level to have the chemo.

Then the ward nurse comes in and we start a very long conversation about me, what I do and what I need to do on this next part of the journey. They asked where I worked and as I work in a building with lots of students they told me it wasn’t a good environment and if I got an infection I could get sepsis (straight to the bad stuff). I was shown a graph of how my immune system drops from Day 1 of chemo to Day 10 where it will be at zero immune system and then climbs back up at Day 14 to Day 21 where I then start the cycle again. My face must have had a mix of devastation and fury at that point. The man cub was nodding and I knew what he was thinking – I know him too well. But he also knows me and knows my stubborn nature. I just can’t compute that I am supposed to stop doing the one thing that keeps me sane at the moment (the cub is in school – she doesn’t need me during the day). I mean, I can redecorate the house from top to bottom, but once I’m done that I’ll probably be looking at committing murder through boredom. And the man cub would be first! Once the nurse recognised the tension in the room, she went and conferred with colleagues and came back with the same answer. And I didn’t have a plan at this point. My mind was working at a million miles an hour but I didn’t have an immediate solution.

Cold capping was discussed again, I didn’t have a definitive answer at this point, it has a chance to work, it has a chance not too. I do not like self imposed uncertainty and this was one of those moments again that I had to make a decision. How quickly did I want to go bald? But I decided that I could wait until the morning of the day! I like to leave it to the last moment (I mean the cub wasn’t named for two days as we couldn’t decide – we like that kind of uncertainty!!).

Then again, we went through the enormous list of side effects that FEC (a whopping three drugs administered one at a time). It has to be given by hand, which Julie the nurse said would take at least half an hour then confessed ‘don’t worry, we all like a chatter’. She doesn’t know me yet – I do not like a chatter!! That will be closed down very quickly.

The list included bruising, bleeding, anaemia, feeling tired (I mean I’d imagine that many drugs could knock a horse out!), hair loss (yep, still getting my head and hair round that), diarrhoea, sore mouth ulcers, loss of appetite (not necessarily a bad thing!), change to taste (metallic), numb or tingly hands, nail changes (nooo, I like my nails, always have done!),  muscle or joint pain, early menopause is likely to kick in; a few others mentioned, but my head was exploding again by then.

Two hours after arriving, we were leaving with heads full. My heart was also breaking about how logistically I could manage work and chemo at the same time. I didn’t have any answers there and then but I was going to have to think it through and see what would be sensible but realistic for me and my sanity.

Arriving home to an excitable cub and parentals asking a million questions we still didn’t have all the answers too is always a good leveller!

I was still sure that I had this though. I will get through this.

My timeline.

A few people respond to my blog posts in current day form, thinking that I am writing as I go. And while I try to date most of my posts, this doesn’t come through clearly when people are reading it for the first time.

So I feel like I need to explain why I write blogs out of time, but in the present tense.

When this journey started I felt I needed to get my thoughts down somewhere. I’m not the best talker, being an introvert. And I usually need a few drinks to open up even to the man cub. Which isn’t a helpful approach every time I need to talk! So I started my little black book (I realise the symbolism is hilarious now!). And I started writing everything down. The good, the bad and the ugly thoughts that came into my head and how I really felt.

But what I couldn’t do was release those thoughts immediately. I wasn’t strong enough to write it down and release it from my soul at the same time. So I wrote everything down, and then a few weeks later I felt strong enough to re-process those thoughts (with a few less swear words in some instances!) and type them down in a coherent way.

I write as I talk. I am ruthless, unforgiving, truthful, sweary at times, and a lot sarcastic! And feedback I get from those who know me has made me realise that my voice and message still comes through my typed word. So if you don’t know me, just imagine a deep Geordie accent with some stubbornness reading out these words!!

I work about two to three weeks behind my actual cancer journey as that feels comfortable to me to be able to process what I was going through, make it more real (rather than the actual word dump I might sometimes end up doing), and take out some of the very personal emotion. I am still an introvert and I can’t quite give all of my soul yet although, believe me, there’s more that will come as this journey unfolds.

As an introvert I also spend a long time second guessing my content. I want people to feel part of the journey. I want people to understand, if they are ever personally affected in any way by cancer, how it may be affecting loved ones. In the longer term I want to do more with the blog when I am finished my own journey in terms of fundraising and research (my brain still cannot compute that in 2018 we are no closer to a full blown cure for cancer and all of its forms).

There is also a lot that has thrown me now you have the label of cancer, you can’t give blood, I may not qualify to be a transplant donor (something that I have always been so passionate about – I strongly believe it should be an opt out, not an opt in), your holiday insurance is now astronomical, I’m going to guess that life insurance will also be so (don’t tell my mam I haven’t got any yet!).

The next steps of the journey through chemo are not going to be pretty. There is a lot more tears (which I totally didn’t anticipate) and more angst than I felt through the cancer bit. For some reason the actual living with the longer term cancer treatment activity is breaking me more than the actual dealings with surgery to remove cancer. It’s a real gift that just keeps giving; this cancer journey.

I take you on this journey, so I can share. So I can help others. So I can make sure no-one feels alone. Because I have found that I am now. Unfortunately the reality is that unless someone is going through exactly the same thing at the same time, you don’t know how to deal with all direct hits. That’s why someone might find it helpful at some point in three months, six months, a year or more. They might associate with something written and may feel hope. Hope that as women who face this challenge can keep strong and take this journey on.

We’ve got this. I’ve got this.

A hair pity party…

22/11/18

My hair. My heart constricts, my breath pauses, I feel ill thinking about getting my hair cut, never mind shaving it. I don’t know whether I break the back of this feeling by cutting it off first or if I just go straight to shaving it. I feel dreadful and broken. Worse than I actually felt about the cancer in my body. Worse than I felt in the build up to two operations. Worse than I felt about telling people.

And all the while, I know in my sane mind that this is ridiculous. It is hair. It doesn’t define me. It doesn’t make me who I am – my devastating wit (bahahaha!), my love for my family, my passions about so many things but mainly my wee cub, my quick fire tongue that leaves me in trouble a lot of the time and my love of the majority of swear words (minus the c one) to adequately describe a lot of situations!! I have also had very short hair before. Albeit I went through some dodgy phases but also theres a few decent pics that the man cub quite likes.

I’m not going to lie, since I broke the back of a good bubble at SWAT of all TV programmes, I have had a few tears behind the bathroom door. Nothing extreme, I seem to have quenched the desire to fully breakdown, but silent tears never the less. And it all seems utterly futile as it is a given, and inevitable. Which is usually when I move into acceptance mode as I like a plan. Its just I don’t like this plan very much at all.

23/11/18

Its Friday night, the night before the hairdressers and the neighbours come round for a ‘couple’ of drinks. When I say a couple, we ended up dancing round the living room at midnight and declaring that we’d shave our heads together. I mean, I wouldn’t put anyone else through it but the offer is beautiful. There was also a very funny conversation about contraception now I can’t take the pill – discussing the use of condoms with lesbians has to be a whole new scenario in my life that I laughed and laughed about!

24/11/18

Now its all well and good having a good Friday night. It is not so well and good waking up at 6am on the sofa, crick in neck, fully dressed, lights still on and an imminent hair appointment at 11am. Downed two pints of water and tried to get at least another hour before the cub arose. It was sorely needed!

Arriving at the hairdressers feeling more than a little tender, I swayed while the cub got her hair cut first. I’d declared to a couple of the girls that the restyle was a necessity for chemo rather than a choice so they were on it and amazing. And I did great at first. The back got absolutely chopped (but you can’t see that when you’re staring at your own face in the mirror!) And then my left side was chopped which is where reality started hitting hard. I mean, I only had barely shoulder length hair, but I still have a lot of it and as it was dropping down the gown I could see it, really see it. By the time my lovely Anna moved to my right side, silent tears were flowing and then I broke. Proper sobs. I mean the shame of sitting in a hairdressers where the majority of Saturday folk are getting Saturday night ready and theres me sobbing, while the cub is in the corner knocking out colouring of unicorns for anyone who would pay her attention.

I have never felt the need to bolt out of a chair so strongly in my life. But somehow, my arse stayed firmly put, knowing that if I bolted there was a good chance I couldn’t physically put my arse back in that chair – and that would have been an even worse haircut situation!! One of the girls sat with the cub making a unicorn cat drawing, Anna stood between the cub and myself, while the owner told me I looked amazing. And I pulled my big girl pants back on, took a deep breath and told Anna to get on with it. And she did an amazing job.

The resilience of the cub is amazing to me. She didn’t bat an eyelid when I was finished, told me my hair was very short, she liked it. And she still loved me. I mean, if I wasn’t already on the edge she was about to tip me over. But there was more to the day to be had – we nipped into the shop on the way home and as I walked in the first girl I clapped eyes on was wearing a head scarf. Whether through cancer or alopecia, I wasn’t to know. But I did think that the gods were testing me to my limits that day!!

I got home, cried some more. And hated my hair for all it was hairdresser done. I absolutely know that it never looks like that the next day and I will never again return to the look the hairdresser pulls off. And if I hate it now, and I am going to hate it full time when it is all in my control.

26/11/18

I’ve spent two days hibernating. I don’t want to be seen. I’m not ready to face the world. Bizarrely though I went out for Sunday lunch yesterday with my gorgeous family and we managed not to see anyone we knew, and it was all very normal and mundane. It’s strange as I don’t ‘feel’ different, but I ‘look’ different when I look in the mirror. And that’s how other people see me and judge me. And that’s not what I am looking forward too. Ugh.

I’m still being a strong bugger inside though. I’ve got this.

Life ticking by…..

19/11/18

It’s a week since I’ve put pen to paper. Why? Because life has continued as it usually does. It has gone quiet again. I managed to skip past Children in Need this year – I never miss it. My most memorable Children in Need was returning to the home the man cub and I first shared a little bit worse for wear and after he had fallen into bed I watched the late part of the programme where the sob stories really kick in and in a drunken stupor I managed to donate £100 with the sky remote alone! That was a tight month thereafter and I’ve had the remote hidden from me every year since! Also, the blubbing would have been epic.

I braved a kids party on Saturday but it was for the ‘other’ Year 1 class so only a few people there, none that I knew, so I escaped under the radar while supping coffee and watching a click and climb wall which I totally wanted to do! I wonder what the conversation will go like when I have no hair. That is dwelling on my mind a lot at the moment. My hair has never been my crowning glory, I have an unruly , not quite curly but wavy, fluffy barnet that does not do as it is told and moisture is it’s nemesis.

20/11/18

I read today that someone in the FB group I follow hasn’t been offered a ‘lift’ on their well boob to align them after surgery. My consultant must be amazing as he was quick off the mark to mention it – I mean I am really lopsided already!! He’s never had an issue with mentioning it and I never even raised it first. I didn’t expect it to be honest and I’m still not sure I want to do it but at least I have the option. It appears some others aren’t even being given that. I’ve read a bit more today about the Triple Negative type of cancer I had is a big thing, and then I stopped. It’s out. I need to focus on that for the moment.

I’m still really haunted by thoughts of no hair and having real palpitations about getting it cut short on Saturday. I’ve not had a good nights sleep for weeks, and dwelling on it is driving me wild. I’ve read today that even cold capping, people lose their hair between days 10 -15 and it can come out in clumps. So then loads just shave it anyway. Aaaagh.

21/11/18

Work is absolutely crazy and I can’t seem to get on top of it fully. I feel like I’m losing days as chemo fast approaches and I’m not sure how to deal with it. Today was one of those crazy days at work. It still feels like I am drowning as I battle with competing emotions in my head. I’m trying to be all things and I’ve barely got my head (and hair!) above water. I seem to forget that emotionally I am dealing with quite a big elephant, while still trying to be superwoman working full time, co-parenting a wild five year old cub, managing a household while trying to look after me. It all feels a little bit too much at times.

I’ve quipped twice today about my chemo. The first in a meeting was ok, as I played the card at the right time! But the second went very quiet and awkward. Then I felt quiet and awkward, and why did I? I shouldn’t have too. But its strange how other people feel uncomfortable and then I feel like I need to keep it on the down low. We should all be shouting about this damn illness. But we’re typically British in our approach to it I’ve realised. It is such a weird place to be – visible illness is easier to deal with as people have to confront it and usually check in. Invisible illness is easier to ignore and this has certainly felt isolating throughout. Why would it not when I’ve spent the last two weeks doing everything I usually do, looking like I normally look. But hiding under a cloud – a cloud that I have to carry while doing everything else and its hard.

I’ve started to think a lot about what is happening to look for cures and while I know that I have given money to a lot of good causes, I’m not sure that I understand the clever world of the scientists that are looking for cures. While I live in this crazy world now, I’m not sure I could even process half and a quarter of what I would read, but I’ve made myself a promise to make sure I do read more about it, I do understand more about it and I know where the money needs to go to make a difference. Because surely there are clever enough people on this planet right now to tackle this. I have to believe that. Along with making sure that everyone, and I mean everyone, checks their boobs!

I’ve still got this, I’m sure, just possibly a bit less hairy in future!

Cosmetic Boob Surgery – yay or nay?

So to distract myself from the one woman pity party that I am having about my hair, I am going to go back to basics and talk about the boobs. Those boobs that are causing me the most angst at the moment, but those boobs that have also done amazing things.

Lets go back to the 17 year old me, pre legally getting lashed, pre steady boyfriend material, pre knowing what actual life was about. I will never forget the moment (and it is bizarre what your mind holds onto isn’t it?) when I walked into the local ready for a karaoke night, dressed in the finest dress I had acquired (halter neck no less) thinking I was an absolute legend; to be took down by a girl some five years older than me stating loudly for all to hear ‘it’s like cherries on an ironing board’. Looking back on that moment, knowing that I remember it so vividly now, I cringe at the younger me dying inside. If only foresight was a legitimate thing. That young me did  do a little bit of bluster and brag, then caved in a corner for the rest of the night and certainly didn’t attempt any karaoke (not a bad situation for anyones ears to be fair!).

Progressing through the formative years of ‘growing up’, I realised that the unnatural hormones of the pill presented its own merits – the boob area grew! Enough never to warrant a cherry reference, but not enough that I needed a bra to reign them in. And I spent a good ten years in the blissful ignorance of underwires, padding, support, cross wires or even a bra at all. I may have had no confidence about other aspects of my being but my boobage wasn’t one of them.  Was very comfortable with them!

Knocking on to the 30 marker (oooh – still upsets me), I noticed there was a lopsided situation. Just slightly. But after much discussion with the girl friends, we decided that it was a real thing (like your feet!), and that if it wasn’t significant then we’d all be ok.

But then the kicker, pregnancy. I was a later arrival to the club than most of the friends I had, and by that time, fifteen years of taking the pill had enhanced the boobage area somewhat more. As soon as I was pregnant, they grew, and kept growing. Until I’d reached a size that your standard shops don’t accommodate (do not get me started on that conversation as you will be there for quite some time!). But with growth came a more significant lopsided issue! And then breast feeding. There are no more words to say on that, but anyone who knows, knows. Pert uprights become spaniels ears. Its no more glamorous than that!

There I was, finished breastfeeding my cub; nine months of hard bloody work (and we went through some significant ups and downs with this, it wasn’t easy and it wasn’t a beautiful journey in parts, that’s for sure), but staring at this skin, that at some point in time I had used for wily ways and then more productive ways, I was thinking, geez – they’re not attractive!

I spent a lot of time reconciling myself with my new body. My ‘new’ boobs and ‘new’ body post baby were a revelation to me and the man cub. An acceptance of this state was undertaken as familyhood just took over and naked antics are limited with a wee cub!! There ain’t much time for that crack amongst teething, separation anxiety, mid night creeping Jesus appearances at the side of the bed, etc, etc!

Then as the years progressed since breastfeeding and now, I have had significant conversations with the man cub about surgery. I have spent a small mortgage on bras that fit the big boob (the little floats!), I had bought a swimsuit with more scaffolding than my house would need for the roof, I get cross every time I go into M&S and their sizing stops at a F, I get mad when shops seem to think that the larger boob size you are the larger back size you are (NO), and I had shouted a lot about ‘getting these sorted’.  If I had won the lottery at any point I would have absolutely gone under the knife to get them aligned.

Fast forward to my current situation, after two surgeries to remove cancer and an offer to reconstruct and I’m not even sure I can do that. It now seems more vain than it was (believe me this is purely personal), and I don’t know if I can now voluntarily go under the knife to ‘sort them out’. I  know that six months ago, I would have fell under a surgeons knife and ‘sorted’ them out within a heartbeat. But having faced risks of surgery as they are (and NHS folk are so clever but there are always risks) I don’t know whether risking more surgery for ‘cosmetic’ purposes while my baby cub still needs me, after all I have gone through already, is worth it. To be honest, I don’t need to confirm my thoughts on this until at least March when chemo is done and genetics results could define a very different journey if mastectomy is a real recommendation. But by god my head is battered already!!!

But I have this battle! And I will own the outcome!

The Oncologist

11/11/18

So I had a wonderful conversation with someone today as I started my Christmas shopping ridiculously early (I’ve finally accepted that this year things have to be different, so I have to be more organised than buying on the 23rd December!). Anyway, back to the conversation. I was advised to cut my hair short before treatment, so it wouldn’t be as much of a shock when it started falling out. I mean its still going to be a bloody shock – I’ll still be bald. And have no hair. Whether it goes from mid length or short. It will still be bald.

And then the kicker of the conversation. ‘Well it will be easier for others to cope with’. FML. I do not give a flying duck about how others will cope with my hair loss. I don’t even much care how the man cub is going to cope. They will all cope. The only person I care about who copes with this is my cub.   I care about how she is going to feel when I have no hair. I care about how I am going to discuss that with her. I care about how I keep it from upsetting her and keeping it positive as we have done throughout this crazy journey. So everyone who might be struggling to cope with my hair loss, please don’t; look out for my cub for me.

13/11/18

After spending a day dwelling on hair loss, and waiting for the Oncologist appointment, I was finally on my way back to another hospital this time, on the start of the next part of the journey. My Oncologist was a straight talking fierce woman. She scared me a little bit! But then super intelligent women usually do. She was remarkably efficient and talked through the next steps methodically and clearly. One of the first conversations was that I had to stop taking the contraceptive pill immediately (last time I did that for a month, I got a cub nine months later). Seems that it won’t be such a problem this time as I’m going to start going through the menopause. The actual menopause. Oh bloody joy, another gift from cancer. As if I wasn’t coping with enough already.

Then the treatment – as I had aggressive cancer, I was going to get a real humdinger of a cocktail of drugs – FEC-T – which I can only describe as a treat of side effects as far as six pages of printed literature could tell me. Then the hair loss. Definitely guaranteed with this combination of drugs. I could try cold capping but that doesn’t offer any guarantees either. I still don’t know whether I want to do that. In amongst the catalogue of information being provided I had bloods taken by a nurse who couldn’t have been more bored. Then returned to sign a consent form saying that I consent to sickness, diarrhoea, ulcers, shakes, red hands, acne, ruined nails, hair loss, bruising, nose bleeds, conjunctivitis, joint pain, headaches. This is a form I really want to sign!!

But I got a date, chemo will start on the 28/11/18 – two weeks!! Why would it not be two weeks! I like to keep things standard! I will have to come in for blood tests on the 26/11/18 and meet the nurses from the Chemo ward. I might have an idea then of what the next four months of my life will entail.

We walked out in a blur again, but found ourselves in the Macmillan hub in the waiting area. The lovely Maggie chatted to us and that’s when I find it hard. Talking to strangers is actually a lot harder than talking to friends. I find myself closer to tears at that point. Maybe because I feel like I need to be brave when its talking to those closest. We picked up a few leaflets and flipping through the hair loss one  and it did advise to cut hair short. The unnamed person above will feel vindicated!

I got back to work two hours later and spent the afternoon putting on my work face. But the back of my mind was spinning in circles about whether I wanted to go bald. I mean, by choice I wouldn’t. But if I just do it, do I own it and do it on my terms. So I made the decision on my way to get the cub to pop into the hairdressers and change my appointment to a restyle. And I’m terrified. Now I don’t know what to do but start searching for new hairstyles!

Its funny still to me that now when Cancer is out of my body I feel worse. I think it might be because I can’t actually hide this bit. I am going to be bloody bald! But I won’t be ‘technically’ ill. Just medically induced illness. The gift that keeps on giving, this cancer.

But I’ve got this. I’m going to do this.