Christmas to New Year – living with chemo.

25/12/18

Iiiiiiiiiiittttttttsssssss Chhhhhhhhhhhrrrrrrrrriiiiiiiiiiiiiiiiissssstmas!!

I’m allowed to be a little bit excited this year – just don’t spread too widely – I’m known as Scrooge! We had the most delightful day, just the three of us, PJ’s all day, a blip when the cub cried buckets at The Good Dinosaur – who knew a Pixar film would break the five year old!!

We had an amazing day and shut the door on the crazy world and crazy cancer. It wasn’t allowed in today.

27/12/18

I haven’t left the house since the day before Christmas Eve and I am ready to flip. I have significant cabin fever going on, I’m snappy, I’m grumpy – I’m not being fair on anyone. We escape the house for a bit of time.

Its also the first day where I haven’t worn a buff on my head in the house as I get used to the cold. I mean, I can’t explain how cold it is not having hair. I have no idea how those with short hair / bald deal with it – I’m going to now! The cub is also so accepting. She has become super clingy over the last few days and hilariously where she used to twirl my hair she is now rubbing my little bald head. She also made sure it was straight one way and spiky the other – I was no more good!!

29/12/18

Yep, I’m getting a quite significant side effect (for me anyway – I totally appreciate that second chemo and the type of chemo I am having hit people differently and I am very lucky so far). My veins where the drugs were put through in my teeny wrists feel like they are constricting and I can barely twist my wrist. I’m trying not to whinge as I’m one of those that will just leave things a couple of days and see if it gets better. It’s not a temperature and a quick glance at the Macmillan notes on the drug cocktail indicate that its only a doctor job if its right where the injection was given. I mean its close, but not that bad…

31/12/18

OK, I’m heading to the chemo unit. On New Years Eve. Under duress from the man cub, I rang the nurses on the ward and they told me to come in. My wrist pain has now spread all the way up my arm and towards my shoulder. Shooting pains and no ability to pick up or do anything with my right hand. I was told to make my way in. So off we went with the cub. I was a bit worried about her being on the ward – the first time she had been to hospital and maybe understood the reality of where her mama went every three weeks. Why was I worried? As per usual, she took it in her stride (not least because she had gone in dressed in her unicorn headband and a twirly dress, because, why not) and was spoiled rotten by everyone there. After a thorough check up and a few questions (hilarious as there is no privacy at all so the personal ones get asked in a half whisper through gritted teeth!) the consensus was those veins won’t be used again. It apparently isn’t uncommon (the cocktail is very strong – I dread to think that if it is doing this to the direct veins it entered my body on, what it is doing elsewhere – hopefully its job of killing off any rouge cells), my veins should recover but it will take time.

Not the best way to head into the New Year, but after the all clear we headed home, to get celebrations underway – just the three of us. Which became two of us at 8pm!! A few drinks and we both ended up in a reflective mood, this certainly wasn’t the year we thought we were going to have this time last year. Who ever does? You never think cancer is going to creep into you life, and if it does there is always the hope it ‘won’t be me’. But it was me. And I have had to deal with it.

2019 is a New Year and again will be a different one to what we would have ever planned. We need to finish the chemo part of this journey and all the weird and wonderful side effects that it is going to throw at me. Then I need to get genetics results and hope that I don’t have dodgy genes! A bit radiotherapy to follow that with no idea what that looks like. Then moving on, living life after, living life differently with new knowledge and brand new views on this precious life we have. Oh, and also a wee trek of 26 miles to walk in July to raise money for Macmillan. What a year it is going to be!!

I don’t sign up to resolutions usually. This year isn’t that much different. I usually just try and be a nicer person each year (usually lasts until 2nd January!), not lose my shit so much (usually lasts until midday on the 1st January!), the usual be healthy, drink less, exercise more (again – 1st January – broken). I stand by all of those but this year I’m going to need to dig deeper than I ever have to deal with some of the medically induced illness, the head mash of having had and living with cancer and ensuring that my family are happy and loved always. The dig deep is going to be needed while also feeling at my lowest ebb but dig deep is what I need to do.

One thing I do want to do when I am at the other end of this journey is actually start researching and reading. It upsets me daily the number of people who make it to the FB group I am part of, but that’s the tip of the iceberg, that’s only the girls who have breast cancer. Cancer itself is so much more wide reaching. While I can’t process more than dealing with my own stuff now, I will. From there I will work out what I can do in a tiny small way to make a difference.

In the meantime, I’ve still got this. I’m digging a lot deeper now, but I do still have it.

Dealing with baldness (and trying to deal with Christmas)

20/12/18

So what made me think that going for cocktails the day after chemo and shaving my head was going to be a good idea. But I did it! Only two cheeky afternoon cocktails, and a good chat with two good friends. We swapped news, and I sat with a warm woolly hat on for an hour. Then I got hot, scratchy and frankly the hat was coming off!! These two weren’t bother – to be fair they have seen me in a lot worse states than my hair loss is showing off now! And also know far too many of my secrets so I have to trust them with this one!! Walking through the bar wasn’t that scary – strangers don’t know me, don’t know if I’m rocking a look, have alopecia or actually as the truth would be have had cancer. And I don’t care much about strangers opinions. I never have. I will never see them again. What I am more worried about is tomorrow, when I am popping into work to see one of the girls off to a new job, and they are my colleagues, my friends, and know me (also might have seen some states of hair!). I am dreading it. Every second of it. But I don’t have a wig yet, I don’t own any fancy hats, I have a lot of woolly hats – but they look a bit daft indoors. I’d rather just own it than look daft – I do that enough of the time with other stuff!!!

The man cub picked me up after getting cub from school, and came in to get me. He looked shocked I had braved it, but the cub didn’t bat an eyelid. She didn’t care. I follow that lead!

21/12/18

Well considering I only had two cocktails, after an hour up to get cub and man cub out the house to school and work, I returned to bed and didn’t get up until 12! Must have needed that!!

It gave me less hours to panic about the work function. I got dressed, and just got on the bus and off I went. I was anxious as I approached work, but could see them all in the bar as I got closer, so went and prepared in the office. I didn’t want to walk in and pretend I was doing a big reveal. And this night was nothing about me. It was about a lovely girl I have worked with for three year, going on to the next part of her adventure and I wasn’t taking away from that. So I wanted to just own this, let no one make a deal of it, and focus still on the gorgeous girl leaving our midst. So I pulled on the big girl pants, walked in with a bottle of prosecco (we were doing BYOB) and just poured a drink! Joined a table, and started up conversation as if nothing was different. And I think it worked. No-one made a fuss, no-one made any significant comment, and life continued. Hopefully I achieved my aim.

Again I didn’t stay too long (I’m not sure a drunken version of myself, two days post chemo bald, would make good company once the drunken arse kicks in – I don’t quite trust where it would go yet – maybe weepy, maybe angry – none good).

22/12/18

Not winning today. I don’t have Santas presents, and the cub has asked for two things. Two. And I have failed spectacularly to prepare for the fact that she has asked for two things that are not in fashion anymore – loom bands and a Little Miss Princess Mr Men book. These things do not exist on the common market because they are not in fashion. Why I did I not anticipate that a three year old craze would be hard to pull off in normal retail park shops three days before Christmas. After a fruitless search of said local retail park, I have resorted to Amazon Prime, setting up a student account, graduating in the next two years to get guaranteed delivery on Christmas Eve. This is tipping a bit of my anxiety too a significant high. Ever the pragmatist, I refused to let it get me down. I decided to trust the millions that already use Amazon Prime (maybe knocked a prayer to some Gods), and had confidence I would save Christmas. However I have never been this disorganised – not with the child. And feeling constantly a bit ropey – not ill, but just ‘not right’ – was knocking me.

P.S. Hat didn’t come off in public today. The risk of seeing someone I might know amongst the hoard of strangers was too much and I couldn’t quite face it.

23/12/18

Two days before Christmas, and I woke up and realised we hadn’t done a yearly tradition of going to see Fenwicks window. So off we went (and I maybe thought we secretly might beat Amazon Prime and find Santas present!). Town came up trumps for somethings – I did manage to successfully buy some other presents that I also needed – I was back in my usual groove of being unorganised but bossing it with no stress at the end of the day! Still no success and still relying on a 10pm order from last night for delivery tomorrow. Eeeek. Fingers crossed now.

24/12/18

10am, knock at the door. Santa has saved the day via a miserable Amazon driver who dropped off the three presents that will make the cubs day. Two boxes of loom bands which I’m sure I will regret and my hoover will be acquainted with soon, and a Little Miss Princess book. I am now a convert to Prime and its merits. Food is in, required presents are here (yet to be wrapped of course but that’s tonights job with a couple of drinks in hand!). The cub and man cub leave to go and see family. I hibernated (still not braving the bald fully) and did boring household tasks.

But reflecting on this time of year, I have maintained normality. I have bought late, swung close to the line and still managed to achieve it. We will go into Christmas Day tomorrow, just the three of us, where we can spend time together, appreciate the good things in life and just be together. I can’t wait.

I still have this, I am still the Mama Bear of this house and I appreciate it all.

Unsung heroes – my army – small but perfectly formed.

I have a very small army and I never realised how much I under appreciate them until this journey started. I don’t think you ever do until a crisis kicks in and then you know who you can turn too. I also realised I had more than I ever thought when I rashly signed up to do a 26 mile and all of a sudden I have a number of people joining me either directly on the walk or in support, that totally blew me away too.

All of these people mean more to me than they could ever know. They are my world and my heroes and while my old life (pre cancer) was good, I couldn’t have anticipated or realised how much I needed them to be by my side. Let me name and shout about them here, as I think they deserve a shout out!

The man cub – he’s going to be furious about being shouted about! But its tough – he needs it! Unassuming and letting me talk about my journey he is my absolute world. His only comment when I started putting some of my message out there was never to surprise him with what I wrote. This might surprise him! But I couldn’t do this journey without him. I won’t pretend that we have had the perfect relationship  in our fifteen years together (fifteen?? I can’t believe it has actually been fifteen!!). We have had a few rocky moments as most relationships, a bit feistiness from us both at the beginning when we knew we wanted to be together but were stubbornly holding onto the single life advantages! But we have laughed and made memories that I wouldn’t want to make with anyone else.  From the moment we had the cub we changed and regardless of the fact he still infuriates me (ironing – does itself apparently!) I wouldn’t have done this parenthood journey with anyone else. We have picked each other up when we are down, supported each other through work and life tribulations, and now he sits with me in a chemo ward (for no other reason but just to be there) and attends every appointment that I have told him he doesn’t need too. He pretends he is strong but now crys a little easier at a sad story on the TV! (will kill me for that!). He is the ‘cutest and bestest daddy’ (as quoted by the cub) in the whole wide world, and makes me smile at least once every day. He won’t be walking 26 miles – looking after the cub he declares (?!), but I know he will be at there throughout the day and at the finish line to cheer me through.

My inner circle – life itself can get in the way sometimes of a catch up. There’s those school friends who scattered for Uni, relocation now means we see each other less than we would like, and other challenges of parenthood, full time jobs, cub activities, and precious family time mean we catch up only a couple of times a year. There is the special one I met at Uni and I couldn’t live without her and her beautiful family. Through all the distance and time, we catch up as if we hadn’t been apart. I am also lucky to have a small group of people who have joined my inner circle over the years and they have added quality and depth to my life that I didn’t know was missing. I have grown as a person by knowing them and I treasure them as they have broken down my walls and know most about me (I need to keep them close!!). They also (shockingly!) share much of our interests – rugby watching, a good night out (very rare!) and good old fashioned banter. They fit right in!

My work colleagues (old and new) – first up to join the walk was the amazing Becca, who without hesitation joined (I think she might have been drunk!) when I mentioned I had signed up. Then came our Audrey (who I don’t think I’ve ever referred to as anything other than ‘our’ Audrey for a long time!). Then followed a group of (possibly coerced!) colleagues who for their own individual reasons are making the leap with me and I am entirely grateful. All are either walking or cheerleading (or donating – if they don’t know yet!)  and their support (cards, flowers, time, donations) are all so gratefully received – they just don’t know how much. Hopefully they do now.

Officers (old and new) – now how to explain this wonderful bunch of people. I work with elected officers who are closer to their student life than I am to old age (!) and they are an amazing, talented and driven group of people. I have old and new Officers joining me, and I can’t wait to catch up, feel proud all over again of their achievements (I feel like a surrogate mammy in most instances), while they make me feel old all over again! I love and hate them!!

Those not doing the walk but have been cheerleading from the sidelines throughout this journey fall into two main groups:

Parentals – my biggest cheerleaders and the ones I can turn to at anytime. They drive me mad on an almost daily basis, but that’s to be expected as they are closer to me than anyone. They are the people I can push away when I am struggling and can get much of my flak, because they will come back. I appreciate that’s perverse but my parents have my back and see the best and worst of me. I don’t tell them enough what they mean to me, I would hope they know. But I wouldn’t and couldn’t be the person I am today without them.

Extended family – when I met the man cub I had little realisation what a big family looked like! And then I joined a Scottish (there are some English in there!) clan that I love dearly! They are bonkers, wonderful, crackers and loving all in one and they have accepted me into the fold and loved me as one of their own. They  adopt you in with no expectation other than to be yourself. Their unfiltered love for me has humbled me and their acceptance has made so happy, words are not enough to portray.

I realise that I have gushed somewhat in the telling of my army story, and this will come as a shock to most people I know. But I need each and everyone of them to realise that they play a special role in helping me in this horrible journey and my life in general. From the sentiments they write, the jokes they tell, the hugs they give (I’m not a brilliant hugger but I do like one!), the actions they take – every single bit of it means more to me than I can ever scribe well enough to explain. They make me feel like I have got this. And I’ll keep fighting to show them I have.

Bald head – now a reality!

18/12/18

Going to bed with puffy eyes does not help the look when you wake up (just for info!). I wake up with puffy eyes and that doesn’t help my mood. The man cub says I have a bald patch the size of a 10p at the back of my head. Great.

It was a gruelling morning. I was barely holding it together. The puffy eyes were making me feel like I could cry at a moments notice. Not helpful. I managed something useful, sending presents to the bestie and kids, and I even managed to buy some presents – go me! Back at work, I can literally feel hair falling out when I move. My whole head is so sore and I can’t focus on anything. But I get my second card from my amazing colleague (with a note on the envelope to say its not a Christmas card!). It had ‘Cancer is an arsehole’ on the front and it nearly floored me right there, but also reminded me that I was dealing with an absolute arsehole and I had to view it that way.

I still haven’t decided what to do tomorrow, do I cold cap or not. If I don’t then I face more hair loss and ultimately do I just need to shave it. The man cub reminded me when we got home that it had mentioned in cold capping literature that I could sit under the cold cap for longer if I wanted to try and keep hair. Which would also bring back those crippling headaches. And I’m also not sure that I could deal with longer brain freeze.

I just can’t bite this bullet. Why? Why? Why? And I can’t explain this to anyone. Everyone is different. Everyone would deal with this differently – I’ve seen that through the FB page that people tackle this in their own way, and I will never judge anyone’s decision as it is unique. It is possibly the hardest decision I have ever approached and need to make. And I can’t bloody make it.

Evening and cub in bed, and man cub informs me the bald patch is visible. It looks ridiculous and I know it won’t grow back (the lady garden is proving that, as are the armpits!). Chemo tomorrow and I’ll be winging it again at this rate if I don’t make a decision.

The man cub and I spend three hours going back and forth over the decision I need to make. I keep thinking I’ll make the decision tomorrow, but deep down I know I need to make it now, and go to bed knowing its done.

11pm, and exhausted with the merry go round of conversation, I finally admit to myself and the world that I know what I need to do. I need to shave it. I need to accept its going, take it off and reduce the distress I am feeling around seeing the loss. I need to reduce my distress so I can focus on my baby girl and not be absorbed by this. I need to take some control and be strong with the new look. I need to stop tormenting myself and having the same conversation when I can actually stop this. I don’t want to do the same thing in three weeks time with more hair loss.

19/12/18

After a funny nights sleep and a far too early alarm, we left in preparation for the day ahead. I had a very quick conversation with the cub about removing my hair and what that might look like – she was still half asleep –  she just looked at me and gave me a kiss!.

After dropping the cub at the school gate, I dropped into my hairdresser (coincidentally directly opposite the school) and asked my lovely Anna whether she could see me that afternoon to take my hair off. She could see the shake on me, and offered a 4pm appointment that day. Decision made.

We headed for the hospital, and ducked into Macmillan’s office to get some head scarves. As is our luck it was shut!! Of course it is! Couldn’t make up our luck!!

I got on the ward, and the nurse allocated for today said ‘cold cap?’. Nope. No I am not. I have took control apparently. The nurses were great and right behind me. Couldn’t have felt stronger at that moment. But then, as it was quicker to the drug stage, I suddenly felt it all. And it was brutal. Every single vial that went through me (including the awful red one) was felt running though my veins. My wrist and arm were twitching and I totally got that the cold cap had distracted me last time. But I was done and dusted in two hours and we were back home by 12.30.

Emotionally exhausted from the previous few days, last nights conversation and the road ahead, we had a cheeky lie down in bed and woke up at 3.30 with the man cub in a panic that we needed to get to the hair appointment. It was probably the best way to spend the time waiting for this moment of reckoning.

At the hairdressers Anna did her thing as she always does. She knows I don’t chatter and she just sat me down and started chopping the majority off before the clippers appeared. At that point the owner of the salon, Yvonne came over, sat at the side of the mirror and started chatting. Just general, and then more about my journey. And all the while the man cub was sat off to on side watching and Anna took the clippers to my head. I didn’t have a tear, I didn’t look in the mirror. I sat there, chatted and lost my hair.

What I hadn’t realised or anticipated was that my head was bloody freezing!!! As soon as I stood up from the chair, I felt the draft, but luckily as its winter a woolly hat doesn’t look amiss. As I went to pay, I was knocked back and told to come back whenever I was ready. That nearly made me cry!!  Buggers!!

We picked the cub up from after school club and took her home. Before I took the woolly hat off, I sat down with her and reminded her of the brief conversation that morning. She lifted up my hat, laughed in my face, then pulled it back on my head as ‘it must be cold mammy’. God, I love her. And because she is fine, I am fine. I have took back control (as much as previous days I doubted this feeling). I have had no tears tonight, and much as I’ll have mirror moments, I have this now.

I have control back. I have this. The house is a tip, Christmas isn’t prepared. But I have this.

Chemo induced hair loss is getting real…

14/12/18

Its Friday!!! After working at home / being confined to the house for seven days it seems weird to be celebrating a Friday. But today is the day that we start Christmas festivities, leading into the tree buying / elf revealing weekend. Don’t tell anyone (I am renowned for being Bah Humbug) but I am a little bit excited. Well, I would be if I hadn’t noticed that every time I run my fingers through my hair, handfuls are coming out.

After nailing a day at work, as a family we went to a local evening attraction at a museum that had opened its doors to allow winter wonderland activity. It was bloody freezing and my head actually hurt with it, but we spent a delightful few hours making finger puppets and carousels, eating hotdogs and standing in front of roaring fires when we could! It was a lovely evening, but when we returned home and the cub was in bed, I had a couple of drinks and the breaking started. I just don’t know if I can do the whole ‘shave the head and take control’ that everyone states in their posts about this part of the journey.

Everything anybody says seems to push me further over the edge:

‘It’ll grow back’ – I know it will but in years; not days, weeks or months.

‘You’ve got good bone structure’ – what does that actually mean?

‘It won’t look that bad’ – how the hell do you know?

‘You’ll feel better taking control’ – easy to say now, and I might, but I don’t want to (petulant five year old attitude right here).

‘You’ll feel better when it’s done’ – I know, but I still don’t want too (still acting like a five year old here).

Aaaagh, all I know is at midnight after a few swift drinks I am not going to solve this one!!

15/12/18

A busy day shopping, mundane activities and family organisation ready for the tree. Tree was bought (second year we’ve done a real one and it was chosen by my cubs and beautifully weird!!), rearranging of furniture to accommodate, decorations dug out from the depths of cupboards and everything ready for tomorrow. I had little time to think about the hair, but did have a wee rant on the phone to my bestie and it felt good to get my ranting off my chest.

16/12/18

By, its been a long day. The tree has gone up properly, an emergency run for fairy lights has been done (they are garish as but the cub chose them and I’m not going to argue!) and a million baubles have been hung. And all the while my hair is full on falling out in clumps. I mean the bit grey I had is also coming out, but it is literally just falling out as I touch it. After the man cub headed to bed I had a little cry about what I was going to do. I’d ranted earlier to my mother about what I was supposed to do and her suggestion was a counsellor! Not helpful at this immediate moment to be honest!!

I decided to put a post on the secret FB page to see how anyone else felt, and I got some lovely responses. A few girls on exactly the same timeline as me and while it was nice to hear, I still couldn’t quite get my head around the fact that I had to decide how to deal with this. I know I have two options. One – continue cold capping on Wednesday (and pray even though I am not a jot religious!) and see if I can hold onto the hair (while also dealing with the five day migraine and crazy time in a cold skull cap. Two – I shave it off; and that’s the end of that story (well, it’s the end of one story but the beginning of another).

17/12/18

(Elf arrived! Oh yay!!)

Broke, broke, broke. I’m back at work today and I’m trying to avoid the hair situation as much as possible. As its Monday before chemo, I need to get bloods taken and appointment at 10.40. A cheeky return to bed (to avoid waking hours as much as possible) didn’t work out for me and I ended up blitzing the house and then I ended up running down the lane like an idiot, reaching the doctors at 10.39!! Blood taken within minutes and I ran on for the bus to get to work. Still managing to supress the crazy situation of the hair loss. The solid meetings that I have to lead while looking like I am in control were hard – I was not ok.

As mentioned in previous posts, my hair is absolutely not my best feature and never has been. But I can’t explain how devastating and ruining this feeling is.

We had a quiet night, tomorrow is last day before chemo and I know a decision is impending. Going to bed, after chatting for a bit, I realised that the bed was actually covered in hair. I mean covered. And for the first time, I absolutely broke. I mean, broke. I think Ryan was shocked as it was the worst I have ever been with any of this journey. I didn’t cry this badly when I was diagnosed, I didn’t cry when I had the operations (apart from the little crazy wake ups from anaesthetic!!), I didn’t even cry when we got the all clear margins prognosis.

But this hair loss, this situation has actually took me to the brink. And I don’t know what to do. I don’t know whether to shave. I don’t want people knowing I am ‘ill’ (when technically I am not). My previous self pity in these posts about hair loss seem pointless now as I am actually living the actual real journey now. I’m heading off to sleep with puffy eyes.

And not sure that I do have this any more. I need to for my two cubs though. I  need to be strong for them. They are my world and I need to make it through this for them.

Chemo – home working confinement

06/12/18

Day 9 of the first cycle of chemo and I am in self agreed confinement to make sure while my immune system is at its lowest I am keeping myself safe from germs. While this is what I need to do and keeps my family and man cub happy while I still work, I know this is going to be hard (and this is just the first one!). To be honest, I will never run out of work that I can do at home, and without distraction I’ll knock doors out of windows! But I also know that this crazy work pattern will not be helpful to my lovely work colleagues. However, as its December and the festive season approaches I might get the first two of these cycles through without too much disruption.

I spend the day making a plan of my diary, but it looks like a Sudoku  puzzle that doesn’t quite match up. Much as my confidence was high after speaking with OHS, I now feel a little overwhelmed with the task ahead of me. How am I going to actually make this work, support my small team of work colleagues without failing them, while keeping myself fit and healthy to keep the battle going so I can continue to be cancer free in the future for my cub. Its certainly a challenge!

09/12/18

So, two days working at home was fine, I actually got caught up finally after the disruption of my hospital appointments and operations. But this Sunday I am down. I have missed out on Santas Breakfast yesterday, which I have never booked before but thought it would be good for her to go to this year (before I realised that I was going to miss this!). Then today I’ve missed a family birthday, where the man cubs family all were and I had to stay at home and miss catching up, miss seeing them when we usually catch up this time of year. And I don’t return to normality (i.e. leave the house) until Thursday. I am cabin fevered already!! The only thing keeping me going is the fact I have a project that for the next three days will take all my waking hours so I can distract my mind from this. Its got too – I need to feel alive.

10/12/18

Well today was interesting – noticed the lady garden was going – my discovery led to the wider revelation that I must have been shaving my armpits in the dark for absolutely no reason whatsoever the last few days!! (I don’t ever turn the light on in a morning until I am dressed so have been totally oblivious to this little joy!!). I have checked my head hair religiously and as it was fairly intact I hadn’t thought about the wider body hair implications. It’s a funny feeling, I mean I know I will save fortunes on razors and wax but oddly its just another step where I feel less like the woman I was (all because of a bit of body hair). This journey is truly the gift that just keeps giving and in ways that I never thought it would. I also realise that I am very lucky to feel so well and the lack of a bit body hair is shallow and self deprecating. But that doesn’t stop me having a hard time with this. And I will be honest about how I feel, thats why I put pen to paper,  but I don’t doubt that I am wallowing in some instances and will look back on these moments further down the line and chastise myself when I am in a better head space.

12/12/18

Third day solid working at home since the weekend and I am ready to tear the walls down. I’ve spoken to four people in total (that includes the cub, man cub, mother and boss) and I am craving normality. I need to get out and tomorrow I will – I’ll be back at work and I bet by 10am I will be missing the quiet of my own home!! I also realised late last night due to my mother kindly highlighting, that I may not be able to donate organs. I’ve already mentioned earlier I need to look into blood donation, but now organ donation? She’d read an article in the Times (her bible of choice) and there was a lovely (scaremongering) feature article on two people who had received organ donation and then got cancer in those organs. Why, oh why does this kind of article make it to a mainstream paper. Where are the articles that remind women (and men) to check themselves, to go for smears, to attend mammograms, to get every lump and bump checked. Where are those articles that can save peoples lives rather than scaremongering about organ donation and the good that it does every day – all those organ donations that allow people to live life that would have evaded them if they had not been blessed to receive one.  I am not naïve to the abuse and pitfalls but still truly believe the pros outweigh the cons, and when this part of my journey is finished, I will start the conversations with healthcare professionals about what I can and cannot donate.

This journey is relentless, but I still have this.

The days following chemo….

29/11/18

Well today I have felt like an absolute fraud for being ‘sick’. Had my OHS appointment on the phone at 10am, which was really good, and had a sensible conversation about how I might be able to still work on my good days (out of the low periods where I would get work to join 21st century and work from home days 9 – 15 to be extra safe). I floated it past the man cub and I know he has misgivings but I’ve promised I will be sensible. My boss was great about it and totally trusts me, so I just need to make a work plan and make it work. No reason why I can’t nail this.

The parentals turned up to check on me – shocker! – and I dragged them down to the docs to pick up a sick note. Its only a 20min walk both ways, and I felt great (although I looked a level of special as advised that I shouldn’t wash my hair for five days after cold capping, and it still had the conditioned look that was something to be seen!). Just as the parentals left friends surprisingly dropped in – I was in a state of shock with the state I looked, but it was lovely to see them.

Once I had the house back to myself, I realised I was just waiting for the wall to hit. Peaks and troughs said one of my lovely work colleagues, and I need to just take this high for the moment. I am warned that a fall may come from the number of side effects that we have gone through, but for the moment I have a plan, I will tackle my diary tomorrow now I am going to go back to work. Its been a good day.

30/11/18

Well I made an absolute cock up of the injections I have to give myself from day 3 to 10. So when I had a c-section I got injections that didn’t show a needle so you just whacked it against your leg, needle pushed in and then disappeared. These Injections didn’t look the same so after some faffing and realising you did have to see the inch long needle and I’d messed the first one up (bin for that). Second one, I nailed – but putting an inch needle at a 45 degree angle into your stomach is not a fun experience. I had to ring the chemo unit as was now one needle down though and admit to being a numpty!

However I was still feeling fraud like, did five hours work and felt like I should have been in work.

1/12/18

Its now nearly Christmas and I’ve never dreaded it so much as I do this year. I can’t work out when I will buy presents (online may be the way forward). We’ve planned to get the tree in on the 15th which is the day after we go to a night time experience in a local museum so should make me feel a bit more festive. I’ve also booked in Santas breakfast for the cub, but the man cub will have to take her as I will be on house arrest that day. Of course it bloody is. Tiredness had caught up on me today but the cub wouldn’t leave my side – man cub offered to take her to the shops and barbers with him, but she told him he’d be alright on his onw and that she would keep me company! So we chilled with hugs and dancing and cuddles!! The headache that started the day after chemo has reached new levels today and I now think it is a migraine off the cold capping – it feels like an army banging my frontal lobe with hundreds of pick axes.

3/12/18

I return to work, and instead of feeling human like I did last week, I am at my worst. The headache is out of control now, and I kind of can’t wait to work from home as I might get loads done! I also had to visit the hospital to replace the cocked up injection. I felt like such a child! I do love my job though. I laughed, went to meetings, caught up on the gossip and felt like me again. I was back in my work place. Where I feel good and I feel strong.

I’ve still got this. And I am doing well (although early days).