Body pains and hot flushes!!

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15/04/19

Woke up with sore boobs. But the cub is getting much better. So I distract myself with that happy scenario and try and ignore the soreness. Feel like I’m just being a hypochondriac and that it’s nothing. I’m also going through some mega hot flushes. They are a real treat – let me explain – they start at my stomach and rise up until my head feels like it is so hot its going to explode. The wave keeps rising for at least ten minutes, settles to a steady heat and then subsides after anything between five to thirty-five minutes. It is like being cooked from the inside out. When it comes on the immediate reaction is to remove as much clothing as possible. Which obviously isn’t possible in work settings but by god, the last few days I could have easily got naked in front of a number of colleagues just to alleviate the heat for a short period.

Absolutely lovely. Now 40mins may not seem too long but these flushes are happening at least five to ten times a day. Christ, I thought I’d have a few more years to prepare for this but nope. Now’s the time. Pragmatic me is trying to make this a good situation and say that I’m getting this over and done with. In reality I am not enjoying this so much. It’s not great in meetings when I am so distracted by a sweaty top lip and spine with a river of sweat running down it. Purely gorgeous stuff here!

The problem I also have is that I feel like I’m being taken back to my insecure days as a manager, when I would flush bright red if I spoke in controversy, if I didn’t quite meet the mould, if I was put on the spot and didn’t know my stuff. And now I feel like the flushes make me look like I am blushing or getting flustered when in reality I am just going through the bloody menopause. I don’t know what is more ridiculous to admit too. I manage two males! They really don’t need to hear this! At some point though I am going to have to bite the bullet and make them embarrassed!!!!

Today has also been my last day with the CP. I took myself again, dealt with more traffic trying to derail me and arrived right on time as if the gods had planned it! I then spent ten minutes in there. Ten minutes. Because I was a smart arse and told him what I thought he wanted to hear! I blagged that I was doing self care, that I was looking after myself, that I was thinking about self love. I told him that I was doing my three minutes per day mindfulness as religiously as I do my teeth, that I was writing down worries during the day and saving them up for ‘worry time’. That I was rationalising my fears rather than catastrophising. I told him all of that in two minutes. And for those entire two minutes – as a full grown adult – I lied. Utter bollacks. I have used the mindfulness to help me nap in the day when I have had my days off (it works a treat, but totally not what it is meant for!), I never set a time to deal with worries, and I still internally catastrophise about cancer (I am really good at not doing it with anything else as I always have been but cancer is the thorn in the side on this one).

I mean, I absolutely think he realised, but also that I might not be for changing. He asked me if I needed more sessions and I said I was all good.

I then spent the next 30mins in the car (I mean I had paid parking for an hour!) and tried to work out why I was not self healing and medicating with some alcohol and a bravado that I hope will get me through. To accept help for my mental health is so alien to me. I have spent my whole life being very mentally well. Not understanding anxiety, depression, or any other form of MH. In my 20’s I would have been so blasé about it. Big girl pants will get you through any situation would have been my go to comment. In truth I know I have said those words to my mother about family or friends that she has spoken about. Reality is biting me in the arse now. Because big girl pants aren’t getting me past these dark thoughts. They aren’t helping me manage the distress I feel when I think about this journey and how I am going to live with a different reality on the other side. FML. What am I doing here to myself. Distraction and deviation is my game here but at some point I need to really deal with this. That won’t be today. But I kind of know it’s going to be one day.

I’ve spent tonight trying to work out whether it is my bra that is causing me pain or whether it is actual real pain in my boobs? I am trying to ignore it. I’m going to pretend it is the bra situation as I can’t quite get that right now I am even more uneven than I ever have been and that I am  just not sitting comfortably. Trying to type on my wee laptop on a weird angle won’t be helping!!

And then I read a blinder of a post on the secret FB group, a young girl had Triple Negative breast cancer, and here she was today, three years later, with a secondary diagnosis of cancer in her liver and now at Stage 4. Fuck. This bloody disease is brutal. For moments I am blown about in a hurricane of emotions, I feel sad for her, furious for her, furious for me that I am always going to live in a state of waiting but also trying to live life to not waste it as it might never happen. I will not catastrophise. But it is so easy to do. What a way to end tonight.

16/04/19

Good god, today has started the same way as yesterday ended. The first news article I see in my newsfeed is about ‘you are what you eat’. They (the press bollacks) are saying that that ‘bacon could cause cancer’. The difference between having 1 rasher or 2 could make a real difference on a weekly, monthly, yearly basis. I’ve stopped reading. I can read no more.

Right – I want to get off. I am tired of this ride and I don’t want to do it anymore.

But I will. I will continue these hot flushes and fighting to be fit. Radiotherapy is just around the corner and I am going to have it.

A poorly child takes us down!!!

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11/04/19

Why is it that I still can’t look in the mirror and recognise me with no hair. You’d think after four months with no hair, I would have become used to looking like this. But I guess thirty odd (!!) years of looking in mirrors with a head of hair is hard to overcome. But I’m also confused as I went through Uni years with short spiky hair in varying shades of colour. I seem to recall I managed to look in mirrors just fine. I also forget that I look like shite most days as when I am facing someone, my voice is the same, my responses are the same, so why would I look different? And then I happen upon a mirror and recoil in horror. Crikey, this is what everyone else is looking at and I forget it. Ugh.

I’ve also missed a check in call today with my lovely Pauline and now sat here tonight with a sore boob. And my armpit has weird little shooting pains going through it. The paranoia now is real. Every little pain I am feeling I double and triple check myself and can see that I could return to hospital every other day if I went down that route. I mean, I am just getting a bit older (still not celebrating that Birthday). But I am bound to feel life niggles, right?!

It’s half term week off from school this week, so you would think it’s been more relaxed without crazy school this week, but it’s been a bit more stressful. The man cub has been dropping me and the cub off near my workplace for breakfast so I can then walk her to an active camp childcare facility. What that does mean is that I have then had to walk a brisk mile back to work once she is dropped off. Much as this is good for my fitness regime and building up my mileage for the ‘big walk’ but I am also draining. And tonight picking the cub up from the camp, she looked like death warmed up. She was silent in the car on the way home (I mean, welcome silence but very eerie for our child not to talk incessantly). I have a feeling there is trouble afoot!

12/04/19

Woke up this morning with a proper poorly baby. She had nothing about her, was sleepy as, (no sign of tonsillitis which I got caught out with last time she was ill), lethargic and an unexpected day off work for the man cub ensued. I think a bad cold is flooring her, she is proper snotty, but also think she is just run down. She has been full tilt with me on this journey. But surely this has took it’s toll on her. When we are at work she is in breakfast club at 8am,she doesn’t get picked up from fun club until 5.30pm. This happens five days a week. And now I have launched her into long days during a school holiday as we work full time. No wonder she is exhausted and can’t fight a cold. The man cub has had to take the work hit and call in to say he has poorly child and not go in as I have meetings set and can’t in all good conscious take more time off. But at the same time the mama guilt is at an all time high. I have failed her and caused her to be really poorly. Aaaagh.

Tonight we have been talking about Gail Porter! I mean the man cub is in his absolute element! 90’s pin up (House of Parliament projection of a nude Gail Porter image are ingrained in my memory – babies may not remember this!) who faced baldness in her past through stress related alopecia and still looked bloody gorgeous.

The reason for talking about her was that the man cub had seen she had breast cancer diagnosed following a thermogram. A scan that identifies heat sources in the body and these can then be identified as cancer.

I haven’t sent myself down a rabbit warren here. We debated it (without facts) for a good while and then I shut the conversation down. I can’t in good faith do any quantifiable research on this in my headspace and give it enough weight to promote / shut down. I am living my unwritten rule of not dealing with Dr. Google and I will maintain that going forward.

13/04/19

Aunty Kate and Uncle Wills came round today. Was absolutely beautiful and spent a good bit of time catching up, chewing the fat, and reconnecting physically. It was so nice to do and while I didn’t feel ‘ill’, I was reminded again that I look a little bit shit. I know that again my outward voice is the same, but my visual appearance to people is different. As they hadn’t seen me since I got bald, I know it was a shock. They were amazing and as always accepted me and the cub into the man cubs family. I am so lucky to have them in my life.

14/04/19

Lazy like Sundays! I love this. (But also feel a little bit guilty that my lazy Sunday is the result of a poorly cub).

I am the first person up in the house today (absolutely unheard of following a Saturday night drinking sesh!), I potter about, do the housework and the cub finally awakes a wee bit brighter but with a red snotty nose and not loving life still. After a couple of hours, she was flagging again (and i was after an early morning!), so we took ourselves to bed and had a little lie down. Now, let me explain, the cub is a snorer. She denies it but by god it’s true! So I took a little video of her snoring (before I put the phone down and slept alongside her). When she woke up I showed her the video to have a chuckle. Her first words – ‘that wasn’t me mama, you’ve put that noise on there, I’m just sleeping quietly’. Oh yeah baby – I’ve spent my time dubbing videos on my phone while you were sleeping! Save me now!!

But today has reminded me that this journey is not going to define me. I will have this and I will continue to have this.

Dealing with incompetence……..

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07/04/19

So I’ve made it to Sunday after a crappy Wednesday curveball.

I had the most gorgeous Friday work morning out in the most beautiful of halls in our region and a cheeky afternoon tea (loved it with JG). I mean I have a cheek to call my job work sometimes! I have finally put feet into boots yesterday (Saturday) and walked 4.5 miles (a very slow 4.5 miles with the parentals and cub) in prep for my 26 mile hike (seriously don’t know who I am kidding at this point).  I have also knocked out a soft play session this morning (a Sunday morning!!!) to catch up with a friend and her beautiful boy.

But I have also broke this weekend. I cried and cried on Saturday night. Still crying over the hair loss. Still crying over the general sight of me looking like shit. And I got a bit desperately sad. I haven’t done that in a while but this weekend I think the setbacks this week and cubs comments have caught up with me and I have got a little bit too sad again. I also (possibly irrationally) think I have another few lumps in the boob area, which I am trying to not deal with as my little head might explode! I am also in crazy headspace where I am wondering if this is my new norm. Having a meltdown every few weeks? I’m sure the man cub won’t appreciate that at all but maybe I need a regular outlet?!?! I’m not sure how I do that but I need to look into it.

09/04/19

FURIOUS. AND I MEAN CAPITAL FURIOUS.

After a Receptionist debacle where the man cub went and took a seat so he didn’t yell at anyone on my behalf and I tried to remain calm as a cucumber (honest – I think I’ve found a zen like level with appointments and receptionists by this point!) I got booked in to be seen for the ad hoc Oncologist appointment that is throwing a curveball in my way  for this additional appointment as something was wrong with the last CAT scan.

The appointment with the Oncologist pre getting a second CAT scan was a joke. She was a hero to me in early stages of this journey but is now appearing to be a weaker link in this process. Turns out – she hadn’t read my full notes properly. Hadn’t read them at all I’m guessing. Because as  I was called in and as we took seats (man cub and I) she asked if I had all my lymph nodes removed in the left armpit (cancer side boob). I sat in outright shock for a few moments, I couldn’t understand what I was being asked. The man cub nudged me back into reality.

As I responded no (totally confused as to why she wouldn’t know this already) she declared that she hadn’t realised as all her Consultants remove all ladies lymph nodes in her main hospital (where I need to get radio); but as I was consulted and had surgery in a different hospital and not advised to do this she hadn’t recognised that this was the case for me. Then she knocked out that there wasn’t any real research that said that they should remove so I should be ok, but that the radio needed to be focussed in more areas than just the boob (because if C ever spread it would go up to my neck and they needed to radio that area but I hadn’t been CAT scanned for that area).

Not gonna lie – complete head fuck. Can’t apologise for the swearing, its the only words I have at this point.

Our heads are blown. Totally blown. I can’t even work out what to think of all of this. I mean, I have already worked out that the girls in the secret FB group all go through slightly different journeys, I just didn’t think that I would have to deal with incompetence across my bloody treatment. Three hospitals, but one oncologist. Surely she should know what the consultants are doing in other hospitals. And should I be worried that ‘her’ consultants in the radio hospital just clear out lymph nodes but my consultant hasn’t? And if theres no research to back this up why are ‘her’ consultants clearing out ladies lymph nodes for fun? Aaaagh, too many questions that I can’t quite deal with and I daresn’t go down google craziness. I will actually lose my shit at that point.

So I’m back in a swimming pool sized cubicle (40mins later – but no stockings in sight this time, I have learned!). Gown on, and waiting to lie flat on my back, boobs out and get more crazy measurements yelled while a laser passes over me. Just great.

All of this debacle and delay because someone didn’t spend 30 seconds more of her time reading my notes. 30 seconds and I would have saved the NHS probably in the region of a few hundred pounds. Maybe thousands to be fair considering the machinery involved. 30 seconds. That is all I have to say. Aaaaaaagh.

Returned to work and calm resumes for my gorgeous colleagues. Might have had a little rant but none of them need to hear my full on madness so I tone it down a level and just do midway rant! It sounds utterly selfish that my biggest issue with all of this is the time delay and that I am worried about my holiday with the family. I’ll get there though.

Then tonight kicks in and I am absolutely ruined.

Asked the man cub what some recycling was in the bathroom (some plastic that I couldn’t work out what it was). The cub pipes up ‘it’s your needle cases mama’. [how has my cub got this wise and savvy and knows this before my addled chemo brain works it out, while never watching me administer said drugs and needle into my stomach every three weeks for five days? Or so I thought].

Tuning into the positive I reassure the cub that I am done with those needles and that I am getting better now. She then declared that she was still sad that ‘you’ve got no hair, no eyelashes and that scar’. Oh my heart broke again. She got a big squish. This is what keeps bringing me back into a sink hole. This is where my sadness keeps reigniting. My cub and all of her innocence should never have to deal with this. Yet she is, and she is bossing it. She is stronger than I ever imagined and she is being a superstar about all forms of this conversation.

Through her, I know I have this. I will keep the strength that is needed to have this from her strength. And we will make this journey end.

Another couple of curveballs…….

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01/04/19

The irony is not lost on me that it is April Fools Day and I am technically ‘full on’ back at work following broken up weeks of chemo and isolation! So, I’ve chucked a little days leave in tomorrow for some self love. As its a Monday I spend the day trying to get some motivation going, all the while knowing that I am off tomorrow and I am going to have a lie in and do sweet nothing!

02/04/19

My day off!! I have a lie in (after obviously getting up for an hour and rallying the troops out of the door – sandwiches made, teeth cleaned, uniforms adorned, bags packed and kisses dished out). When I finally got up I decided that I needed a plan for radio so rang the ward and asked them to confirm my appointment times. I don’t like not having a plan (well, not for the most part) so this has stabilised me somewhat today.

However it has been the only thing keeping me on an even keel. I have dry skin, am tired, have puffy eyes, stuck eyelids with no eyelashes, feel generally a bit shit, thinking why me, tidying after my cubs, ironing, and cleaning. Generally feeling sorry for myself while trying to maintain normality. And I realise that this is why work has actually been good for me. Months back when I was told by the lovely chemo nurses I had to stop working I reacted in horror. At the time I thought I needed work to keep me sane. Today I know I need work to keep me sane. Left alone to my own devices allows dark thoughts to creep in and my mental health starts suffering. Much as work is a little bit bonkers at times it is a big factor in keeping me going, being a welcome distraction to me and allowing me to regain some control over my life. It may not be for everyone but it has been my god send and I absolutely believe my family would have suffered more if I hadn’t had the distraction of craziness (I also love it so that helps!).

03/04/19

No. Just no.

You couldn’t make this up. I missed a call today from the new hospital who were about to administer radiotherapy and when I rang them back, the Receptionist advised that I needed to come back in for another CAT scan as the Oncologist wasn’t happy with the last one and wants another one done. WTAF. No detail beyond that. No reassurance that nothing was majorly wrong. No clue as to what could be wrong. Just that I needed to come back in.

Then the kicker. This would delay my radiotherapy for a week. Another whole week. Which would take my end date of radiotherapy right to the end of May when we were supposed to be going away for a week for the man cubs birthday and a celebration that we were done with Cancer and active treatment. That we had conquered this last year. However we are now being pushed to the limits.

The lovely receptionist then proceeded to ask if ‘that was ok’. Well no. It’s not bloody ok. It’s frustratingly not ok. What a stupid bloody question to ask me. Again I am floored by the utter lack of empathy by the staff that work the outer perimeters of treatment and their lack of training on how to deal with people who are already on the edge or passed tipping point. I can’t work out where I am today.

I rang the man cub in hysterics, which wouldn’t have helped him at work neither. But I can’t put my lovely work colleagues through my hysteria. They have to cope with my absence and general lower work output as it is. The last thing they need is me having a meltdown in the office!! I spend ten minutes ranting to no avail to the man cub, as he can’t change this outcome. Then I pull myself together, give myself a pep talk that CP would be proud of and crack on with the day.

Tonight I have got madder and madder though. I’ve been closer to Dr. Google than I have ever been, just to understand what this might mean. But I’ll send myself crazy mad with alternatives and my pragmatic head is holding its own that it won’t be helpful. I am also mad that my treatment will be delayed by a week – because what they’re actually saying is that it will take a week for the oncologist to review the results. I appreciate her caseload must be hundreds of people, but surely just get me through the process and I’ll be out the other end quicker and off the caseload. Aaaaaaaagh. It’s been a long night of procrastinating and swinging between cross and mad or mad and cross. There is a very fine line.

04/04/19

Wake up today in a corker of a mood, having gone to bed in a corker of a mood. No amount of sleep was changing that today it appears.

The morning didn’t really get better. As the cub is giving out the hugs and kisses as is obligatory for most mornings (she’s a right hugger and as I said, she’s getting a bit more clingy now this final phase is kicking in), she asked me a question.

‘Mama, what do I do if I miss you [insert my first internal reaction of ‘while you’re at work?].

Nope – this was the actual conversation:

‘Mama, what do I do if I miss you when you die?’

………………………………………….cue a little bit of silence as I process as quickly as possible how I respond to this while also simultaneously trying not to burst into tears and reveal that this is my biggest fear and why I saw a Clinical Psychologist in the first place.

As I stuttered through a response while the man cub is oblivious to this in his morning shower, I reassure her that I will always be in her heart and memories. That she can always conjure up images of good times we have together and I will always be hugging her wherever I am (I don’t even believe in an afterlife but at that minute I wanted to believe it for my five year old). After a few more real hugs pacified her, and the distraction of morning toothbrushing took over her main thoughts, I retreated downstairs to deal with the mundane tasks of getting ready for work.

How I didn’t break there and then I’ll never know. I’ve actually held it together really well today. But I know that this is going to get to me. This is going to pick away at my edges of sanity when I am having my dark thoughts. Because my five year old innocent angel has had to talk to me about death and question what she will do without me. Five year old. At five she shouldn’t be worrying about a singular thing in her life apart from whether she has been allowed to dress herself in what she wants to wear (and to be fair she normally wins that battle as I can’t be chewed to ever have that fight!). At five she should be worrying whether there is enough paper in the house for her to cut, craft, glue, make crap out of, or enough glitter in the world! Not her mama dying.

This week was supposed to mark the first full week post chemo that I would return to a level of normality. What I have actually done is gone backwards. Hit a wall, and then travelled backwards. Cancer and all of its gifts has continued to rule my life and that has thrown me somewhat. But I will get through this.

I will have this last part of the journey. I will get through it. I will be there to hug my cub as many times as she wants, whenever she wants, always. She has my heart and soul. And I will have this for her.

Cheeky family weekend away – nailed!!!!

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28/03/19

So after a long morning today getting radiotherapy ready, I head back into work to attend an afternoon tea for Inspiring Women across the larger organisation that my work feeds into. Someone I know, someone cheeky but gorgeous nominated me as an inspiring woman. They went out of their way to submit an nomination with me in mind. I can’t even describe how that makes me feel. How someone who is remaining anonymous (I’ve made some guesses!),has gone out of their way to make me feel wonderful. God, some people are absolutely gorgeous. Humanity can seem a bit crackers at the moment but my belief is restored sometimes. I had a lovely day – I mean I felt like the most noticeable person in the room for the first ten minutes (the only bald, ill looking person) but then I had a wonderful afternoon tea and sat with another wonderful friend from work and I enjoyed my time. I really did. So thank you my little angel!

29/03/19

I have pulled it off!! I have nailed a surprise weekend away without giving it away. Absolutely nailed and feeling a little smug!

So yesterday I fibbed that I needed the car as I had meetings across town and it would be easier for me! So after dumping cub at breakfast club, man cub at work and arriving at work myself I threw myself into a half day and ended it with a lovely lunch date with my first walker sign up (remember that 26 miler I’m doing in July?!). Madness. We made a few arrangements and I then hurtled home to pack for three of us for a weekend away and that is where I came unstuck. I am absolutely not one of those people who packs clothes for their other halves. Never have been, and never will be. He is very particular about what he wears (to me they’re all shades of a t-shirt!). He is very much his own person and wardrobe and I never get involved with that. So I stood like a bloody dithering idiot and picked a good ten outfits to pack (for two nights!!!!!!!!) just in case. The cub and I were easier to pack for!

I picked her up from school, after letting her in on the secret on the walk in to breakfast club, we flew home to get changed then set off to pick up her daddy. Slight problem with traffic, and when he rang to ask where I was, she was covering her mouth in the back of the car so the in-car speaker didn’t pick her up! While I fibbed again about where I actually was.

As we pulled into his workplace, the sun visor on the cubs window actually hid her from view and as he opened the boot, she yelled ‘surprise’……… And there was silence. Before he questioned what was going on! I had done it. He was surprised. We were escaping the doldrums of appointments, hospital waiting rooms, illness, our own four walls that were starting to become tighter – and we were going to live as a family for the weekend. Forgetting the cancer cloud that overshadowed everything we did. We were going to be free………

A short hour later, we reached a wonderful little holiday site and were introduced to our lodge (for those of us of a certain age – this is actually a static caravan, but a lot nicer than the ones we stayed in as kids, and now referred to as a ‘lodge’ so sounding much more attractive but way more gorgeous than a static) and welcomed by Karen, the lovely manager (possibly?) of the venue. She took us over to our home for the next fe nights, showed us how the oven worked (won’t be using that this weekend!), heating functioned (might use it – we are in middle UK in March!) and if we had any problems we could give her a knock in the site office or give her a call.

This offer led to much hilarity within the next few hours that Karen would never be privy too, but the man cub and I have recounted as the weekend has gone on. Within 10mins of Karen leaving and while him and I emptied the car of clothing, food supplies, alcohol and games to keep us entertained, we made the final journey into the lodge to find the cub pulling her wellies on and declaring she was off to see Karen. When asked why, she exclaimed that there was no bath to be found in the lodge and while two showers in the en-suites was lovely, this was a ‘problem’ as she needed a bath on a Friday and Karen had said to go to her with any problems!!!! After much discussion, we managed to talk the cub down off the edge and realise that the problem wasn’t something that Karen would be able to solve.

Some couple of hours later, after getting truly settled, fish and chip takeaway, and a good glug of drink from us adults we made moves to put the cub to bed. As the man cub asked where I had packed the PJ’s for the cub, I had a sinking feeling and realisation that I had forgotten this significant bit off clothing in my haste to pack for three people. Within seconds the cub was back at the door, wellies on, declaring she was off to see Karen again as this was a problem and Karen had said she would solve them.

By this point I was no more good.

It took another good twenty minutes of negotiations with a headstrong five year old that again, Karen wasn’t going to be able to solve the issue of PJ’s being missing, and maybe one of mama bears t-shirts would make do for two nights away!

Tonight we have laughed harder than we have done in a long time. Karen has no idea that she has made our night, which is all the more sweeter. We are spoiling ourselves, taking time as a family to recoup before the next stage of this journey and making sweet memories. I didn’t realise how much I had needed this, but now I have done it I recognise how valuable it has been to escape. For all of us. I mean Karen has actually made the holiday without realising, but we have also escaped reality for a few days. And that is beyond priceless.

I will return to the journey I know, but for now I am living my best life with my favourite people. I have them in my pocket always.

Oncology …. readiness for Radiotherapy

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28/03/19

I’ve had a bad couple of days following my Heart of Darkness delving. Its made me cry a lot! Too be honest, I’ve cried about my hair again and tried to bury the actual reason why I wouldn’t stop crying. My hair is still my nemesis here. I hate it so much and am so upset that it still bothers me so much. The visual look is so shocking and awful that I am still reeling every day from it. Aaaagh. I have become a mirror avoider, I was never the biggest fan of looking in the mirror anyway but now not doing any makeup (as what’s the point?) I am avoiding it full stop and purely relying on the man cub to tell me if an outfit falls short of the mark. Hopefully he doesn’t let me run with a bad one – I don’t think he would!

But back to today, a 6am start (cheers cub!) and squishy hugs in bed for an hour before we finally faced the day, I was ready for the Oncologist at a new hospital, a new environment to me, to get ready for the next wave in the journey. Today is the start of the radiotherapy journey. I can’t get through this quick enough. We were also testing the water as the 40min journey can be variable as the weather. As younger adults we both worked in town so know the craziness that the traffic can pose (and a random accident can set everything off by an easy hour). We’re still trying to work out logistics of how I can get to 20 appointments over four weeks with one car, a cub that needs school and a man cub that needs work in the opposite direction to the hospital. As if I haven’t got enough to manage and sort out already while still working full time. FML.

So 75mins after dropping the cub in breakfast club, we arrived at the latest hospital in my journey (with a random detour into a housing estate when I read the sat nav wrong!), and while we were on time for the appointment at 9am, I still waited 30mins to be seen. My admiration for the Oncologist is rapidly falling down the ladder. Wasn’t helped by the Receptionist who checked me in – what’s your name, Morrison, do you have a car park pass, no not yet, let me check (thumbs through a lot of envelopes) – no we don’t have that here yet so let me check you in for your appointment, thank you, hmmmm what was your name again, Morrison, oh yes I did see that in the car park pass pile – I thought you said Charlton. The man cub by that point had took a seat and was looking thoroughly disgusted!!!

I mean, don’t get me wrong – I am grateful for the car park pass! The hospital kindly give us cancer patients a pass. So for the princely sum of £10 I can park everyday for radiotherapy and appointments for free. Bearing in mind hospital parking costs (and the fact I used to have to be in chemo for three hours or more before it dropped to a pound (still had to do some paperwork and leg work for that!) ) I’m ok with the assistance. I’m not sure if its just a cancer thing or whether they do this with all patients with reoccurring appointments. I’d like to think I wasn’t that special with the cancer! I also forgot to tell you all that when I rang to get the pass, they told me to keep it once I was done with it – ‘incase I ever needed it again’. Well, that was a positive little conversation with them, wasn’t it. Cheers for that. I’ll anticipate secondary cancer and I’ll be back here in a couple of years to reactivate my card. No thank you. Oh – the bloody customer service / messages that NHS staff have with people really needs a revisit. It really does.

So I have completely digressed into car park payments, so back to the new waiting room. It is a brand new wing of the hospital (brand new – read in the last five years) and it is lovely but still feels like a hospital. We sat in uncomfortable seats, surrounded by some nice art work. But were thoroughly bored. The only interesting thing I did read was that there was a Maggies Centre at this hospital (don’t have them at the previous two hospitals where I have been treated), which is a space to go when waiting for appointments or between appointments. I might need to visit that space. And find out more about it.

When I was finally called for my appointment the Oncologist discussed the side effects of radio (I still haven’t fully read the ridiculously long document!). Radio will require some tiny tattoos (still don’t know what this is), could affect your lungs and breathing (great), could affect your heart (lovely), could cause furthers cancers in 20 – 30 years time (smashing), will cause skin dryness and burning (bring it on), and further hair loss (I don’t have a single hair on my body to lose – not a problem!!). She then asks would I like to sign to say I consent. Well YES mate!! Of course I want to sign that. Dear me, these healthcare professionals need to slant the messages in a different way. I really think a marketing team need to get behind NHS staff here so folk like me don’t start tearing them apart. I could easily be swayed to not do treatment based on this matter of fact attitude as there is no positive mentioned in the analogue. And while I am a trusting member of the non medical world, I am slowly starting to understand why people start checking out of this process. The clinical, sterile approach to something that is so devastating is hard to reconcile. If I was a pure Google fanatic I would be dissing this off very quickly I’d imagine. I know that I could easily be swayed by alternative medicines (which I am not against – just haven’t read up on), that have a positive marketing spin, as this negativity is wearing me down.

The laissez-faire attitude is done in under two minutes after I sign the paperwork without a murmur (shocker – I’m such a conformist!), and I am sent to get measured up for a positioning situation to have the daily radiotherapy. We are due to wait another 50 minutes. We wait 90!

The man cub is more furious on my behalf at this point. I am a bit more benevolent. I know I am a number. Much as my lovely Pauline and consultant have been amazing, this isn’t a norm and its hard to see how it can be. My Oncologist must have a caseload of thousands (considering how many people I see in waiting rooms), so why would I be special? I have to trust that she has read my notes, made a recommendation and trust the process. There are also people here who are numbers too. Waiting in line to be seen for 10/15/20 mins just to get whatever treatment it is to move onto the next stage of the journey. I guess I am becoming slightly immune to the waiting game and accepting that once I am in there – if I take longer for an appointment someone else if going to be waiting. And that is ok.

When I finally get taken through to the changing room, I suddenly realised the hilarious situation – I had a pair of long stockings on under my dress (it was a tight fitting dress!! And I am going straight back to work and have meetings which is the reason I am doing smart wear!). I had to take the dress off to put a gown on so I could get my baps out for the scan. Geez, I absolutely rolled about laughing as I was waiting in the smallest changing room ever (think swimming pool size!). Stood there with suspender tights on, knickers, no top half clothing, just a gown. Utterly ludicrous!!

What followed once I was called was also ridiculous crazy situation. I had to jump up onto a solid hard bed, legs propped up by a v shaped cardboard cut out, then I had to throw my arms up in some stirrups. The glamour had hit new lows, this was a smear test uncomfortableness for boobs on steroids. All of this was also not helped by the young trainee student (the hospital is a training ground for radiographers) who was a lovely young man who looked more uncomfortable than I did!! (I am not against trainees but first appointments for this craic aren’t great for the poor patient). There was then a lot of measurements (from some laser red beams that I couldn’t see) shouted out; permanent tattoos (tiny pin prick ones) put on my body (and also a lot of bloody pen marks which apparently won’t be permanent!), and a swing through a tiny MRI equivalent (I did have a mild panic that it was a big machine and I was face up but it was only 10 inches wide if that!). Then I was told that was it. My dates would be given to me by Reception for the first few weeks of radiotherapy. I was free to go until my life was going to be dictated daily by a 10min appointment. Every weekday. For four weeks. Yay!

But I have this, and four weeks – 20 school days; is nothing. I will get through it

Heart of Darkness

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25/03/19

Broken. I was broken today. BROKEN.

Yep, today was the day that I went to see my CP and had to deal with the Heart of Darkness.

I was distracted this morning and my eyes are back to crazy weepy, blurry, dryness, painfulness. Chemo is still dealing its cards. I’m a bit worried about it but I need to be patient and get chemo drugs out of my system so I can get them checked properly. I got a new phone today so tried to distract myself with the childish excitement of getting a new toy. It didn’t help!

After trying to nap as its my low immune days and I’m not at work, I got myself ready for my CP appointment. I am full on dreading it. I have no idea how I am going to get through it!! So I drove myself (traffic was trying to help me avoid as massive queues but I made it right on time!) after telling the parentals that I didn’t have an appointment as I couldn’t deal with my daddy seeing the state that I might come out in.

CP eased me into the session taking me through how my mindfulness was going and whether I was making the most of my worry time. Mmmmm, I fib a little as I know I haven’t done anywhere as much as I should / could. I still wing it every day and am only tapping into these techniques when I really feel down. Which I know defeats the purpose and if I use the techniques every day that I could reduce the effects of my bad days. It is so hard though when I’m not conditioned to this way of self care, and have managed pretty well so far in my life.

Then BAM. Into dealing with my actual emotions. And off I blubbed! Immediately got right to the point that it is my gorgeous cub that is causing me the most pain and angst. That my whole world revolves around her and that the pure briefest of thoughts of not being around for her sends me into an absolute spiral. I’ve ceased up writing this. Its so crazy. At 25 years old I didn’t want kids – would have happily had my tubes tied. At 30 I was still living life in the fast lane and no kids featured on my horizon. My biological clock kicked in at 33 and I then spent two years persuading the man cub that a mini cub would be a great addition to our family! He finally agreed!!

But I’ve realised today that it is purely her that is driving my darkest thoughts. I guess I see that everyone else in my life – man cub, family, friends – can look after themselves if I wasn’t here. And don’t get me wrong, I know she would be loved, adored, looked after and thrive, BUT I want to be there, I want to see her grow up, I want to support her in all she does, I want to witness what she achieves.

At the point I could feel myself tipped into the crevasse, I turned the conversation back to a rational and logical approach and told CP that if I could help other people and that if my story made people check themselves then I had achieved something. He might as well have bollacked me at that point!!!!He paused me right in my tracks and told me that we needed to deal with these emotions surrounding the cub and how I could deal with this going forward.

And that was it. That was when I actually broke. I got to the real point. Not just the fact that I love this gorgeous cub and want to see her become amazing. It is because I feel I’ve failed. FAILED her. That its my fault that I got cancer. Its my fault that she’s living with this. Something I have done has caused this (there is obviously no actual evidence behind this). Something in my lifestyle has made this happen. I haven’t fought hard enough. My body has failed her. I have been too affluent in my choices. I have been selfish. Those words – I have failed. And CP stops me. He corrects me. He tries to bring me back on track about why I feel such devastating sadness and again I flip into my pragmatic head and pause the tears. I know that I am being irrational and that tears aren’t actually going to solve anything here and now.

But CP pushes me again. He challenges me on the word ‘fail’. Cancer is a silent enemy, living within us, and maybe my vices have led to my body not being sharp enough to defend against the sneaky little bugger. Have I failed. Maybe I have. I failed to live the cleanest life possible to make sure my cub wouldn’t deal with this. I failed to appreciate fully the life we are given is a precious gift. I still keep failing as I can’t beat the habits (I mean I am going through a challenging time, so breaking habits at this moment in time is quite hard!).  CP reminds me that Cancer doesn’t discriminate. It can appear in the healthiest clean living human, or the most unhealthy vice driven. I’m probably somewhere in the middle! And I then cried. Cried for me. Cried for my cub. Cried for my man cub and my family.

Its so hard because there is a constant ‘why me’. I mean, I wouldn’t wish this on my worst enemy, but I still say ‘why me’ in my head a lot. I guess its human nature. I mean the man cub and I laugh at how unlucky we are at times. We could win the lottery and lose the ticket!! I mean, we live the ‘sods law’ rule most common days!!

I walked out of the appointment truly feeling the lowest I’ve ever felt. But also weirdly satisfied. As I had finally cried about some of my demons. The devil sat on my shoulder. And I had got the words out and finally made connections in my mind about why I was so sad. It absolutely makes sense why I do feel so desperately sad and this gives me a new power. I have control again.

And I will have this battle too.