The curiosity of children.

13/02/19

This is a really tricky one to write. I have struggled with what has happened today, how I dealt with it, how I continue to deal with it and how I help my beautiful soul of a cub deal with it.

I waffle, lets get back to what today dealt me. I went back to work after my seven days of isolation, following my fourth (brutal change of drug) chemo. Over half way and I am slowly getting more tired, more wallowing self pity, more side effects kicking in, more visible roughness! But today I made it into work. I bussed in, walked up a mighty bank (and thought I may need a nap at the top!) and was actually functional (I mean – more functional than I have been over the last few days!). The poorly eye situation has kicked in though – where they were dry before, they now feel like they could weep constantly. I also realised that eyelashes do a very important job – and while I did do GCSE Biology, and fully understand the concept of why we have eyelashes, it’s only when you don’t have them that you realise the amazing job they do. Keeping dust and particles out of your eyes, protecting from breeze and preventing sleepy gunk from sticking your eyelids together is certainly something that I never thought I would suddenly appreciate!!

After a long, meeting filled day, I returned to normal mama duties and went with the man cub to pick the cub up from after-school club. All innocent as per usual, and I had my woolly hat on as haven’t quite braved dealing with the mix of children that make up after-school club and the questions that my cub may get from a range of children up to the age of eleven.

Tonight though, I was tossed a curveball. While persuading the cub to ‘come off the stage’ (!!) where she was strutting about to some music with a friend, she jumped down to a half level stage to give me a hug. At that moment, her friend asked both of us why I was wearing a woolly hat indoors. My immediate response was that it was chilly. My cub (in her gorgeous innocence) went one step further and while whipping the hat off my head, proudly proclaimed that it was also to keep my head warm. At that point I had no where to turn!

And while I had been open about my baldness at a previous childs party with the cub (assuming that parents would have conversations if needed), no children had reacted the way that I observed next. As I rescued the cubs bag and coat from the storage boxes, I turned just in time to witness that my cub was being dragged backwards while frantic whispering was underway. She looked uncomfortable, she walked away without answering whatever was being asked of her, and she was quiet in the walk out to the car. I was fizzing.

Checking in with her in the car, I asked what her friend was chatting to her about – keeping it casual – she responded that they had been asking why I had no hair and it was strange, but she said that I had been poorly so that was why. My poor heart broke somewhat. My baby girl, my cub, my only child is having to deal with playground craziness already. And she rocked it!!

Later this evening, talking it through with the man cub, we have discussed how cubs behave and accepting that they are all different and I don’t want to cause any issues with how this played out. I think my issue with how this did pan out was with the way my cub wasn’t quite prepared for the weird questions. The open ones are fine – she copes with those with her mamas pragmatism – she is honest, she states facts; what she didn’t cope with was sly, weird backhanded whispers.

I’m all good with the kids asking questions. I’m all good with the parents asking questions. I really am. I want people to know now (I mean its hard to miss the differences to how I look, so why not make something of it and spread the word to prevent anyone else having to deal with a worse fate). But what I am baffled by with the five year olds is the polar opposite approaches by them about how I look. The cub has never flinched  but she wouldn’t, her mama is still here and giving her hugs! I’d imagine that some other cubs have asked the question behind closed doors, but also that sensible conversations have also happened following those questions! I’ve had some of the other kids from the cubs class ask whether I had my hair cut off at the hairdressers and why I had it cut off – and I sat down with them and mentioned I had been poorly so had to have my hair cut. They asked whether it would grow back and then said it was shorter than theirs (the boys!) and all of this was fine. I sat down, I was as open as I would ever be with someone elses child while still being honest and truthful in front of my cub.

That is the difference though – genuine curiosity versus being a tinker (they are still five). My heart breaks for my wonderful, caring, accepting cub. School, friendships, trials and tribulations of being five are still a minefield and she is having to deal with my ‘visual’ differences and explain them when she shouldn’t bloody have too. Aaaaagh.

As a family we have this now, my cub has this, my man cub has this and I have this. We’ll make it!

Decisions made and eyelashes lost!

08/02/19

Well I’ve done it. I’ve informed the man cub and the parentals of my decision too officially postpone my birthday. I don’t want to celebrate when I’m not my best like I’ve already said. Remembering my last big birthday (god, it really doesn’t feel ten years since my 30th!), I had the loveliest of days. I had a lovely meal with twenty of my nearest and dearest. We went to a small rural pub, had a lovely meal, then (after the parentals were dispatched home) I watched the end of the Six Nations as its always falls that weekend and might have had to be carried into a taxi home. A perfect day and night.

I know it’s another milestone in my life, but I just don’t feel like there is much to celebrate at the moment. I am tired. I am feeing like this isn’t the celebration that I anticipated or want. I’ll be like the Queen this year and pick another day once this journey is over to celebrate properly. I’ll do all the cards and presents then, so it feels like a celebration. But I just can’t focus on anything else but this journey at the moment and I’m parking everything else in my life. I am also sliding full on into another cold and cough, along with a spectacular taste in my mouth that is rendering all food substances to be in the yak category.

09/02/19

So this new drug – Docetaxal – is a real treat. Who would have known that where FEC took my head and bodily body hair, Docetaxal would take my eyelashes and eyebrows. It has made me so sad again. After a look in the bathroom mirror, properly, for the first time in a while I realised that I have one lonely eyelash left on my lower right eye. My eyes are puffy (steroid aided) and I am feeling the most unattractive version of myself. I’m no supermodel normally, but at least I looked well. I now look like the roughest version of myself and its not great.

All of this is not helped by the fact that I have the migraine from hell, helpfully assisted by the hacking cough. It’s a fully blown migraine that I haven’t dealt with the likes since being a hormonal teenager. By 1pm I have begged the man cub to go and find me any drugs that will alleviate this. I have been on the chemo line with it being Saturday and because of my temperature being ok, legal drugs seems to be the only way forward. This wallowing self pity is tiring.

11/02/19

So my second appointment today with my clinical psychologist. Still feels weird saying that out loud. We did some meditation today to try and centre my thinking on just breathing and shutting everything else out. This kind of mindfullness can be used to recentre my thoughts and can be used at any time. It was the most bizarre experience, and again – while my pragmatic head ‘gets it’, I just really struggle with this. I am so far out of my comfort zone and it feels strange that while my body is fighting something it never thought it would have too, my mental health is having its own internal fight.

Old school me would have ran a million miles from a bit of meditation, ran out of the door of a clinical psychologists, laughed in the face of anyone who suggested I might need mental health direction and scoffed at the idea that I couldn’t ‘cope’. Coping with the challenges of chemotherapy and side effects that it has caused (regardless of knowing pragmatically that it is short term) I have understanding of how meditation could be helpful (not sure how effective I will be with that!), I have stepped twice in through the door to meet CP, I won’t laugh in the face of anyone who suggest I need mental health support (I promise), and seven months into a cancer journey I never anticipated I would have – I might finally say I’m coping a bit less well than I ever have been.

That doesn’t sit well with me though. I’ve never been one to admit I don’t cope. I am stubborn and under stress I shut down, shut help out and soldier on. Nine times out of ten I will succeed in whatever it is I’ve set my mind too, and I don’t think those odds are bad especially since I am now getting old!! Problem is that, while I have ‘coped’ externally so far with the diagnosis of cancer, the operations, the recovery, and three doses of FEC drug which caused me to lose my hair; the latest round of Docetaxal has brought me too new lows and as my body feels like it is submitting in the fight, my head and thoughts are also submitting in the fight. It’s harder to be positive, to say out loud that I’m coping and to believe it.

But deep down I still have this. And I will keep going.

Normality has up and left the building!!

04/02/19

Wallowing self pity continuing today. Last night the cub must have known her mama was off, and she appeared at 2am with a torch. She was promptly dispatched to her own bed but reappeared ten mins later to check that it was a firm no! It was a firm no, which probably threw her as usually I cave first time so she was likely confused and thought the second time would be a winner. In reality and hindsight, I should have just done what I always do, let her crawl in, then I crawl out and into her bed. As 3am and I was in a weird trippy version of myself, business planning and strategising cancer – you couldn’t make it up!!

After escaping to the sofa to give the man cub some uninterrupted sleep, the alarm went off for work when I was mid planning!! Yep – work was sacked off. Dispatched the cubs and returned to my actual bed. Woke up midday and the parentals arrived with flowers and a shelf to put up! That’s what they do!! My mam does flowers, my dad does practical!

I was a proper grouch (thankfully they have to put up with me, so I’m probably at my worst behaviour with them as I know they have to love me no matter what – childish behaviour I know).

The day then ended in hilarity when the cubs returned. The small cub came in and hid her mouth while telling me she had lost her tooth. Her first one. My first thought was that she was fibbing as she is a wind up merchant, but no, hand moved away to remove a gaping gap in the middle of her lower set of teeth and it wasn’t even the full on wobbly one. She then proceeded to explain how it was lost – eating a freeby apple in Tescos and she’d swallowed the bugger. Her first tooth and she’d swallowed it. Too be honest, that had me laughing more than anything as she’s definitely our daughter!!! No bloody luck! After sneaking in to play tooth fairy duties after the cub had shouted loudly at bed time to the fairy so she knew (we’re tight and a single gold coin was all the cub got – to be fair she’d have been happy with a chocolate one) I admitted to the man cub why he had been in Tescos in the first place.

I had caved about the food taste situation and posted on the FB group what food I might actually enjoy this afternoon. I was miserable about the loss of taste buds and it appears that it isn’t going to get any better on docetaxal, probably going to get worse, and the list of food items that might assist in getting me through were:

Thai Green Curry

McDonalds

Lemon curd

Greggs

Space Raiders

Rice Crispies

Chicken kievs, beans and chips with vinegar

Salt & Vinegar crisps

Ice Cream

Sweet Chilli Crisps

Curry

Strong Cheddar on Toast

Vimto

Now, bread has tipped me over the edge – I could actually gag like a child on it, so half of these items are already on the ban list. I also don’t think crisps, cereal or hangover burgers are going to do the trick. Which leaves me with curries and ice cream. I mean, if there’s a plus side to this crazy I’ll eat that every day!! So I had messaged the man cub late afternoon to attack Tescos and get me chilli crisps and I was already planning on a chicken chilli noodle soup (usually a firm favourite this house) to see if I could kick start any pleasure in eating food.

After I had performed tooth fairy duties I ate the soup (yak), tried bread with the soup (super yak), pinched a bit of chocolate cookie to see if that could nail some taste (yak), chocolate rolls (equally yak) and then I tried some liquorice twists (something I added to the list myself as a strong aniseed taste that might break the barrier of awfulness) – yep, liquorice twists is what I am going to live on for the next nine weeks. Yay!

05/02/19

I am back on the chemo ward early doors. Had a phone call yesterday to ask me to come in and recheck my bloods. I mean, if they weren’t good last week, they gave me chemo so god help me. If they were borderline – aaaaagh – how do manage to keep it going for the next two if its that bad. But lets remember I had been poorly with the cold, so I’m sat in the waiting room at 8am, confident as, but literally falling asleep in the chair. The Unit doesn’t open until 9am and I feel like part of the furniture by the time I rock in to see the girls. Bloods taken, platelets are ok, neurolites (making these words up but I still won’t google so that’s what it sounded like!) are close to ok (good side of ok but also close to not ok). But I left in the knowledge I had made round 4 and I just needed to be really well for round 5 and 6.

After a mile walk back to work in the frosty morning I made my way through the day with my lovely colleagues who always welcome me back with open arms. And I finally was honest in my responses when I was caught off guard when I went to get coffees (to keep the eyes open). I finally admitted that I wasn’t ‘OK’, my stock response normally. I’ve been broken down to the stage where I need to admit this, and maybe this is the realisation that I need help. I know that everyone understands, everyone has probably expected it for longer than I have, no-one is judging me. But I still struggle with it, I still view this as failure on my part. I am never this low and I’m unsure now if there is a lower level this chemo will take me.

But I have my lovely CP who will ‘fix me’! And I have this. I am determined to have this.

Procrastinating at its finest ……

31/01/19

There is no going back to previous life after a cancer diagnosis.

Believe me, I am procrastinating now like an absolute pro. I appreciate its absolutely ridiculous. I am now in my isolation long weekend after my fourth chemo blast, which leaves me a long time on my own while the man cub and cub are out at work and school. This time alone is not helpful for my mental health to be honest. And trying to work from home is getting harder and harder. While previously I loved a good day working from home and knocked doors out of windows, I have now lost all desire and motivation as I am tired and spend too much of my time dwelling on this bloody situation.

I have tried reading my ‘Happiness’ book today and while a bit of it resonated, I still can’t deal with it fully. I know that I need to make some changes in my thinking, but hey – I’m a good few years into my life and its difficult to change my lifetime pragmatic thinking habits! I know I need to change this thinking for the next few days, weeks, months and years as I can’t sustain this craziness, but I am finding it really hard to actually commit to the change I know I need to do. In my previous life (pre cancer diagnosis) I would have found this beyond hard to accept and take on board, and that was when I had a clearer head. I probably would have scoffed at the ideas raised around negative thinking – to be fair, I didn’t have the negative thinking to deal with.  Post cancer diagnosis, I am finding this beyond challenging.

Post cancer diagnosis irretrievably changes you. There is no going back to headspace that was just full of managing three diaries. I would like to go back to those days now.

The only way I can equate the change in mind-set is that of becoming a carer of a child. If you don’t have children, you have amazing lie ins, get drunk when you want, go out when you want and have no big deals to worry about. Then a cub arrives and wham bam, lie ins are a beautiful dream; drunkenness isn’t good craic when you have to wake up early; every outing requires a thought of change clothes, bottled water, snacks, fruit, sunglasses, woolly hats etc; and worry for another human being multiplies beyond control.

Post cancer diagnosis is similar, where before I managed three diaries, flapped about uniforms and work clothes being washed and ironed, dealt with mama guilt on a daily basis (especially on a Friday when she is sometimes last in after-school club as we don’t have the luxury of finishing early), and shouting when I shouldn’t have shouted because I was tired. Post cancer, I have to factor in an additional diary of hospital appointments, still get the washing and ironing done while feeling a bit crappy, attempting to do my paid work badly, doing mama guilt in a different way – that this damn cancer may take me too soon, and shouting in frustration.

So in other words – I would really like to return to uncomplicated life pre cancer as post cancer isn’t great and I have a cub that needs me so I already have enough to deal with.

02/02/19

Man cub and I are happy with the start of the Six Nations last night, the cub is happy as it’s snowing and yesterday was a cheeky Inset day so no school (which meant she thought 5:30am was an acceptable time to start the day!! We’ve managed to go sledging today and while it was lovely to make more memories and fill my phone up again with a few more photos and videos I was still in a weird head space. My body is starting to feel more tired now – a short walk to our favourite sledging hill had me wiped. After making a snowman (albeit a mini one as I didn’t have the energy to crawl about making a big one), I feel guilty. I have fought so far with a lot of grit and determination and now it feels like I’m giving up the fight as I am so tired.

03/02/19

3:00am and I am in some weird steroid trip where my body isn’t my own and I feel like  am actually floating out of bed and above my body. I am hallucinating and feel like I’m on an acid trip (I mean I’m guessing – I’ve never actually had an acid trip!). It was a long  night where I didn’t ever feel like I slept. And by god, I’m sure the cub knows as she’s being proper clingy – mama, mama, mama – every two minutes. In turn I have been snappy and irritable. I still managed to boss the Sunday jobs – washing, dishes, ironing, Sunday dinner, pudding – and not fall over.

I’m getting bored already of my pity parties now. I didn’t want to change, I didn’t want this diagnosis. Now I have it I’m not quite sure how to move forward. We were talking last night about those who have similar diagnosis to me (Triple Negative) and don’t take on chemotherapy and radiotherapy as actually the ‘cancer’ has been removed. Words can be linked to that – confident/brave/assured/stupid/naïve/regretful – who am I to judge? At some points so far in this chemo journey I’d happily get off the train and say I want to end the journey now. I haven’t and I know I won’t but I daren’t dwell too much on it as an option as I may well take a assured/naïve choice!

But I did make a decision tonight. My birthday is next month – the big 40 (ssssshhh don’t tell anyone!) – and I do not want to ‘celebrate’ two days after my last chemo. I appreciate that probably is also worth a celebration but I will feel like crap and I just can’t see how I will enjoy anything properly. I want to taste a lovely meal, I want to feel good, I want to have enough energy to be excited all day long and I want to have a bloody good drink! I also want to smile, laugh and guffaw without it being forced and masking my pain. And if I already feel on the floor at 4th chemo, how will I feel two days after 6th chemo. Nope – birthday is being rearranged. Not cancelled (my family won’t forgive me!), but rearranged to a date where I can do all that I want too and feel fabulous. I just need to explain that to everyone and hope they understand. Fingers crossed my mama and the man cub get on board!!

I’m still fighting this, I have to. I and I have got this – just with a looser grip than I usually have.

 

4th chemo coming at me with a change of drugs…

29/01/19

I mean, regardless of the fact I saw the clinical psychologist on Monday I am still doing my own head in today about the change in chemo drugs from tomorrow. I’d kind of got used to the FEC, I know it ruined a few veins, has made my eyes weird, lost my hair (won’t quite forgive it for that), but all in all I haven’t been too bad. Now I move onto the ‘T’ part of the regime, which is strange as its called docetaxal but I guess FEC-D doesn’t have the same ring as FEC-T!

I think what’s worrying me is that as I wasn’t that floored with the FEC, this is where I am going to be floored. Where has my bloody pragmatism gone?I I am struggling with these thoughts, and  I finally said out loud to colleagues at work ‘I am struggling’. I have spent all morning procrastinating, attending meetings, avoiding wok that needs dealing with, emails falling apart and all I can do is think about tomorrow. What is bloody wrong with me?

To add to the chemo joy tomorrow, I also have the follow up Genetics appointment to see if I have the dodgy gene. I am actually a lot more pragmatic about that to be honest, I can deal with that like the original lump situation – it isn’t a thing yet, so don’t make it a thing. Its just this actual bloody cancer that is throwing my head about.

We follow our usual ritual of having a couple of drinks before chemo tomorrow as the man cub doesn’t have work, and we relax our way into the routine. Everything will be ok and we chat through it like we usually do. Then BAM, 9pm and I suddenly realised I had bloody steroids to take (its even written on the calendar) from 9am this morning – I had missed a bloody dose. F**k, f**kety, f**k. I am in a blind panic and I don’t know what to do, will they delay my chemo tomorrow? Will I have to live this bloody day again? Should I not tell them?! After a good half hour panic, I posted on the secret FB group and joy of joys I got positive feedback – it’s more than likely that I will just get an IV tomorrow of additional steroids which will prolong the time I’m in there, but unlikely to be cancelled. Thank god for that. I go to bed still reeling but happier that tomorrow is going ahead (pragmatist all the way!).

30/01/19

Fourth chemo – I am coming for you! Well, I didn’t feel that chirpy this morning but I’m ready for it. Straight into chemo ward (I say ward – I hate it, its so bad and we try and hog a corner seat so I don’t have to socialise) and I admit to the beautiful nurses that I missed steroids yesterday, so as anticipated they need to give me an extra IV. But I have more drama to deal with first – my platelets in my blood taken on Monday are borderline, I need to have that checked before I can even start. The man cub and I have a chuckle as of course we have a hiccup and an unexpected one at that! Thankfully, by 9.15 bloods were a go. Then the next hiccup!!! The veins weren’t playing and took three goes and two nurses to try and get the bloody needle in – then we started. I sent the man cub off half way through the morning as he was practically snoring and he got my fourth card in the collection from my lovely colleague at work. When he brought it back I opened it and absolutely burst out laughing (honest, I’m going to get a banning order on this ward!!). It was so perfect in tone and appropriate to my mood:

‘Your love of stiff cocktails and hard drugs has gone a little too far this time…’

The very fact that I was hooked up to the scary hard drugs, that I had dreaded this change, made me chuckle. (Just to clarify, I do like a stiff cocktail but not any other hard drugs!).

Finally, after the cold new drugs had entered, we were done by midday (bit panic as Genetics appointment at 1pm) and headed to the next hospital. I was numb by this point and just wanted to get it over and done with and get on with my afternoon. We popped into the shop to grab food and I stared for a long time at a prawn sandwich – why is it that you want what you can’t have – even sandwiches are defeating me at the moment.

After resorting to a ham and cheese (NOT a substitute by the way), scoffed in the car, we entered the next hospital in the queue today and waited for the appointment in a sterile corridor with lots of signs about dementia (it’s a community hospital). Thankfully the crazy woman who had talked at us last time was absent, replaced by a smiling, lovely woman who didn’t mess about and got straight to the point.

‘You don’t have the BRAC gene’.

And just like that, this part of the journey is done. Two minutes later, after some advice about my sister and cub being checked as they reached certain age points, we were walking back out of the hospital. I think we were stunned. I was in a bit of a daze at this point – so no dodgy genes means that I don’t have to consider a mastectomy, I also don’t need to consider a hysterectomy (chances of Ovarian Cancer are raised with the BRAC gene) , so in reality I now just need to deal with the drugs and radiotherapy. The belt and braces to ensure that no little pesky cells remain in my body. I guess I feel like the fight is now all on my body to do and I don’t quite have any control over that.

But this is a good day. I am happy, I don’t have to make more decisions, I just need to keep going with the chemo, the radio, and then recovery. I’ve got this. I really have!!

Out of my comfort zone with a clinical psychologist!

28/01/19

So after a weekend full of snot and teary eyes (and they were not of my own doing, purely cold driven!), I have had to mentally prepare for my first ever appointment in my life with a mental health care professional. I am absolutely not against looking after mental health and seeking help when needed. I have been very blessed and lucky not to have tapped into professional help in my life until now. However, now it is something that I have come to realise I may very well  need to move me forward with this journey once I have completed the medical side of things.

This is probably the hardest thing I have written about (closely followed by my hair, and you lovely folk know how much I struggled with that). I feel a little bit broken and a little bit weaker in myself knowing that I need some stranger (albeit a very qualified professional) to identify for me what I am struggling with and enabling me to cope with the changes in my thinking and my mindset going forward with and living with cancer. I am a pragmatist by nature, as likely shown by my previous musings. I spent the first four weeks of having a ‘lump’ sitting in the camp that it wouldn’t be anything significant (likely PASH – a non cancerous mass) and that at worst case scenario I would need an operation to get it out but not cancer. I remained pragmatic when I was told it was cancer, although I had my down days, and kept focussed on ‘the next appointment’ and how I could ‘get through it’.

However, as time has gone on and my health has been battered with medical inducement (who ever knew that the worst part of this journey for me would be caused by the drugs that will help me), my mental health has also took a battering. As my previous standard physical health has tried to help me retain a level of an immune system that allows me to still get up, be a mama bear and work everyday; my functioning mental health has started a slide into unhelpful thoughts and thinking that I didn’t think I would ever deal with. Because this is so alien to me, and following my desperate sadness around hair loss and how annoyed I was about something so innocuous in this journey I knew I needed to do something. I need to come out of this mentally strong. I’m certainly going to be physically weaker, but if I can do something for my mental health while I’m at it, surely I owe it to myself and my cubs to take the reins and see what I can do.

My poor dad has to take me to the appointment as its miles from work – I mean he loves being useful but the hospital canteen shuts early, so he just manages to get a coffee and scone and then sits in the car for the whole time! I however get to meet a very lovely clinical psychologist, sat with my back to a clock (its funny the little things you notice when you’re avoiding the big picture!) and I proceeded to have verbal diarrhoea for the next twenty minutes!! I felt that if I just talked at him then I wouldn’t get any awkward questions back! How naïve am I?! He’s probably watched that trick a million times!!!

I ranted on for a long time about how pragmatic I am, how I can cope with most things, how I haven’t had any huge issues in my life that I have had to work through, how I am amazingly stubborn (honestly, that’s not just me speak – my psych eval at work contests that I really am!), how task driven, focus driven, objective and rational I am at approaching problems. Then the kicker – all of this doesn’t quite work with a cancer diagnosis.

My pragmatic approach let me down -cancer happened.

No previous huge issues in my life – cancer happened.

Stubbornness – didn’t stop cancer.

Task, focus, objective, rational – none of that stopped cancer either.

That’s when I fall apart. Right there – all of my hard wired, works for everything / anything approach fails. Spectacularly fails. I do not know how to deal with this. Because something that is unlikely to happen to folk actually happened to me. And my computer says NO (typing this did just make me chuckle though!).

Once I’d calmed down (about halfway through the session!) and let the poor man speak, he started to make a lot of sense! I appreciate he is paid too and has also spent a lot of time training too, but I listened and it made sense so I liked him!! He said I needed to change my thinking and control issues……. Oh, I didn’t quite like the sound of that. I mean, I know my thinking is a little bit off with this cancer malarkey, but control issues – oh no – I like my control!!!

Then he broke my psyche down a little bit more. He uttered the words out loud – I am hard wired to be stubborn.

At this point a few people I know will be rolling about laughing. As was I at the time. Shocking state of affairs that he got that in 20 mins! Too funny in fact that he mentioned it was hard wired. Harder to deal with that I actually need to do something about that and to be honest I already know that moving that mindset will actually be harder than dealing with some of the physical side effects of chemo!

At that moment right there, I connect the sentiment to reality and know that going forward my wonderful CP (as I shall affectionately call him) and I are going to do a bit of a dance. He knows this too, I’m sure, and is way too clever to get caught up in it but will let me pretend! I’m going to do bluster and bravado at every appointment, like I’ve still got this, and anything he says is something I already know. He’s going to let me think this but subtlety drop little thought bombs for me to go away and deal with. I know he is going to test me and my thinking in ways that have never been challenged before (apart from the good old ‘getting older and realising better’ craic!). He is going to enable me to deal with this negative thinking in a way that is so alien to me at this moment in time that I am going to rebel (I’m still 21 at heart).

BUT. I know I need this. I know I need to be strong, to be able to deal with negative thoughts, to be able to challenge my emotions in a positive way, to live every day to the fullest, to move on from cancer and not dwell on the ‘what ifs’. I know I need help with that now – I may have had moments of ‘what if’ before, but I have never felt it weigh me down like cancer has and stay with me for so long.

CP’s parting homework task (who knew you got homework?) was to start looking into ACT (Acceptance and Commitment Therapy); a psychotherapy that stops the avoidance, denying and struggling with emotions and instead accepts them while being more optimistic about my other goals and values. This is deep for even me to even comprehend at this moment in time. So the appointment we have in two weeks is going to be a real treat!!! To add to the homework he also asks me to scan a list of thirty values and pick five that I strongly resonate with. I think my day jobs are easier than mental health management all day long at this point.

I’ve made it though; I made the first step in improving my mental health following this devastating diagnosis and subsequent medical interventions. I will not let cancer beat my mental health and I have got this. Certainly a different area of my health, but I’ve got it.

 

 

Third chemo blues..

14/01/19

After the euphoria of making it through the party at the weekend being bald in front of a room full of parents of the cubs peers, and a PJ day yesterday at the request of the cub (who am I to complain about a PJ day?!), I have hit earth with an almighty bump. Five days after the third FEC drugs have been administered, and I am back at work and TIRED. No other words for it, but tired. The problem with working from home and being out of the office is that when you return to the office the entire day is made up of meetings with people who need your time face to face. Subsequently I meet myself coming backwards by the end of the days, and I am in a never ending cycle of never being able to catch up. My inbox is falling apart and my work sanity is slowly falling apart.

Add to that the taste in my mouth has reached a new low for me so far. Like I’m sucking on nails, which is delightful and doesn’t help my mood – food (nice food at that!) is something that keeps you on track in even darkest days doesn’t it? If anyone is like me, a good naughty snack on all the crap in the house is what distracts from the moment, and I can’t even do that.

Its funny (well, not really), but this year instead of resolutions re: food, I decided that we wouldn’t have the same meal twice for the year. We have never been bad at eating, but can very easily get into slumps of the same cycle. Especially weekends and Fridays and Saturdays can quickly lead to subsequent weekends of takeaways of pizzas. I was determined to change this, but the last three nights I’ve made lovely homemade meals and the only person enjoying them has been the man cub. I’ve eaten for eating sake and I’ve not enjoyed a bloody morsel of it. Aaaagh!

19/01/19

Four days into solitary confinement and I am demented. My mojo had up and went the moment I started it on Thursday and although I had some significant work to do which kind of kept me on track, I have still procrastinated in a lot of ways. I’d like to say that I’ve tidied the house in procrastination but I can’t even be bothered to do that (don’t worry the hoover still comes out every day – just not the cleaning of the skirting boards). I’ve dragged the man cub and child on a walk today to get some fresh air and it was absolutely grim. They both whinged in their own way (the cub more vocal than the man) and I think I cemented the awfulness of it when walked us into a field with three very large highland bulls! We reversed and made our way home very quickly at that point!!

Today I released my Just Giving Page for the walk I’m planning on doing in July. Twenty six miles hike round Ullswater in the Lake District. I must be bloody mad! But I’ve also managed to persuade twenty odd folk to join my madness and raise money with me. To kick off the fundraising first my lovely work colleague helped me articulate my story in a few short words, and it felt quite cathartic all over again. It’s Saturday night though, so I released it after I had a couple of drinks for dutch courage and then left it to do its thing. Hopefully I can raise what I need too, but more hopefully I can actually do the bloody walk!!

21/01/19

OK – I am not superwoman. I need to remember this. Yesterday I packed the man cub and cub off to see the family and I hoovered, washed, ironed, sorted paperwork, sorted the cubs room, then wondered why I was tired. I mean, usually that would be a couple of hours jobs and I’d still have had time to do a trip to the gym and an afternoon/early night out on the town (pre cub!), and I’d have still made it to work the next day, fresh as something flower like! Now, I am exhausted, can’t concentrate, no motivation and this is a totally alien concept to me. Never in all my working history have I not had a motivation to get a job done. Even when I was on maternity leave and three months self chosen redundancy time with my cub I was always motivated. I think today I might be on a scary downhill spiral and I’m not entirely sure how I’m going to get out of this.

24/01/19

I’ve made it back to work! After seven days of solitary confinement and a cub that has been in my bed for the last three nights with a full on cold, I have finally made it back to humanity. Oh and what a day. I had a cry before I even left the house as I finally realised that I had lost most of my eyelashes (none on the bottom lids, about five on the top) – its funny that I hadn’t even realised this the last seven days as I wasn’t really looking at my face or dealing with trying to do makeup and mascara! Lets be clear – mascara doesn’t work on five lashes!!!

So excited to get to work, I had big meetings (shocked a couple of significant folk who hadn’t seen my baldness since before Christmas which was amusing, but I did feel a bit sorry for them!). But as the day has progressed I have nosedived into looking like a snotty, weepy, coughing mess and I hate colds. I am not good with them in my best version of myself, I turn a bit pathetic and needy (man cub can contest) and whinge a lot! This will be a lot worse, I can feel it now. I can see wallowing in my own snot and self pity on the cards for the weekend and it isn’t going to be pretty.

I’m going to say that I still have this though. I’m sure I will on the other side of the cold, but I’m a baby with a cold so I’m going to reserve judgement!!!!