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.

Brave the Shave

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Ooooooh, ooooh, oh. I’m so very tempted to get involved in a FB debate but I absolutely will end up being trolled and I never get involved in these situations but I am itching. My fingers have typed the message out five times and I have deleted it five times.

Let me explain. Macmillan are running two fundraising campaigns at the moment – Brave the Shave and Stay up all night. Now you can imagine which one I have my knickers in a twist about!

The comments on Brave the Shave have lit up. So I have spent the last ten minutes reading all the comments (and rights to reply) and considered everyone fairly and objectively (bearing in mind that is taking all of my lovely CP’s work with me to do this). Then BAM. I happen on a comment that has really tipped me over the edge – it went something like this:

‘I think its amazing, if I had cancer and lost my hair through chemo and people did this to support me I’d feel so much better’.

Can you imagine my fury at this point. If. If. If. IF. The operative word there is if Miss Poster. Wow, just wow. If you had cancer, you’d actually know how it felt to lose your hair and maybe you might have the same feeling, but possibly, quite possibly, maybe you won’t. You can’t hypothesis about this situation. Until you live it. Nothing in life prepares you for losing your hair. Nothing. Even if you make the decision. And bear in mind, I did make the choice in the end. But it didn’t change the pain.

I am six months post chop and the hair is growing back Sinead O’Connor esque – its at the very least all the same length (a bit grey!) but it covers my head and I don’t look so ill as along with my head hair, my eyebrows and eyelashes are back (well – getting there!). So I’m feeling OK about looking in the mirror again. OK, not good, but OK. I can actually laugh now when people talk about their bad hair days (my little wicked demon is also back so taking great pleasure in this!). Not having hair has made me realise that we talk about hair a lot. Whether that be because it looks a bit shit, the weather is that misty wetness that makes it frizz like a poodle (my old look pretty much every day!), its having a wild day, it needs a cut, I need to get to the hairdressers – its desperate. Then as I am nodding along, I also see a level of realisation creep in. You can see the ‘aw shit, I’m talking to the bald lass’! The conversation usually gets changed or ended quite quickly and my little devil has a wee chuckle!

So while I am in a much better place, lets consider the argument that Brave the Shave raises a lot of money. Which can do an awful lot of good – paying for nurses, counsellors, research, etc, etc, etc. Regardless of the ignorant comment the there is a cure and the government are hiding it (I will absolutely write about this – a whole other story), the split of people who like this kind of fundraising and those who don’t is about 50/50. 50% are loving it, arranging fundraisers, shaving heads. 50% are getting mad, think its disrespectful, don’t understand how anyone doing it voluntarily can feel the pain. Oh it is so divisive. I’ll also go one step further and challenge the word ‘brave’. How is it ‘brave’ to shave when you walk into the pub, social club, location of event; knowing what you are going to do and be prepared. How ‘brave’ is it to shave when your hair is already falling out in clumps and causing distress beyond your wildest imagination?  Is any of that ‘brave’? I really don’t believe it is.

But then there are comments about solitude. A support from those who do the shave in support and solidarity for family, friends, besties. I’m pleased for these people (honestly, this isn’t patronising), if their mates or family help them with solidarity in baldness then I am pleased that they find some comfort in this. But that also doesn’t reduce the validity of feeling from others like me who don’t get it. I do not need anyone else to do this with me. I can’t imagine having the man cub, my dad, or anyone else for that matter – shaving their head in solidarity, no matter whether it came from the best of places. And I did have the offer. But I could never in sober life have dealt with it. I didn’t want to do it myself – why would I ever put anyone else through it?

This is such a personal journey. For those going through it and those supporting it. It will always cause controversy but as a fundraiser I get that it probably is an absolute winner. A further comment has struck me though:

‘They lose their hair but don’t lose their eyelashes, eyebrows, body hair; and Macmillan are exploiting the worst time of peoples lives’

This – just this, rings so true. I looked tragically ill for months when I had my hair shaved. Regardless of how many people said it was fine, I avoided mirrors like the plague. I couldn’t deal with what I looked like. I have no photos at all of that period of my life (which upsets me as the cub and I always have a cheeky selfie on a weekend morning). So much as I am happy to fundraise (I’m walking 26 bloody miles soon to raise money for Macmillan), I just can’t get on board with this campaign. Going back to those who have commented on the post positively, they appear to be from people who haven’t gone through a personal cancer journey (willing to be corrected – just my view), and those who are upset by it seem to be those, similar to myself, who have dealt with the raw emotion of having to do this and it being out of our control.

So, my final thoughts. After re-reading a lot of comments, my own spiel above and a lot of thinking.

If you are thinking of doing it, please consider those friends, family or relations that cancer has touched. Check in with them and see whether they would view it as solidarity or whether it would upset them. Make your choice from there. If there is a positive response, please go for it and raise as much money as you can as every little helps (whichever charity you choose). If someone even makes a murmur about it in the negative, please consider another option – say a 26 mile walk (!!), running a marathon, giving up a favourite treat, anything; please find another way.

For me, please never shave your head. The distress for me is still so palpable and although it may improve with time and distance (and hair growth), I do know that someone trying to show me solidarity will tip me into a void that won’t be a good place! And much as CP worked his magic on my mindset, I’m not sure I’m that mentally well to deal with it. In time I may decide that I will keep the shaved head – to be honest it is a doddle to manage, or I may decide that I will spend a small bloody fortune each week getting my hair styled (don’t tell the man cub). Whatever I do, I don’t want to confront the idea that someone is voluntarily making a choice to be bald . Don’t judge me! I will also make efforts not to judge those who show their support in this way, much as I may disagree.

If this journey has taught me anything, its that we all weave a different path. This is mine. I am being honest. I am trying to be fair. I hope I have managed to convey both.

My 6th chemo card marks the real end!

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18/03/19

After a long Sunday yesterday where I slept a lot (or attempted too with a five year old in the house!) and got frustrated with life, I decided that at 5am today, it wasn’t going to be a day that I could go to work. I hate that I’m being flaky with work but I am so tired. Tired. TIRED. I can’t even explain the level to anybody as it is nothing I have felt like before. I absolutely need to go to work tomorrow as have a meeting that I do not want to rearrange. I need to drag them big girl pants on, my best outfit and heels and smash it like the old me would have done. No matter how bloody tired I am. I might have no hair but I can still be fierce in a meeting when needed. So today I am went back to bed and tried to sleep so I could be a functioning human tomorrow. Then tonight I wrote my first post about the clinical psychologist and it took me back to that place again. I think it was particularly hard as I know I have the ‘Heart of Darkness’ session coming, and writing about what I should be doing to help my mental health I know that I don’t care enough about it, I need to care more.

19/03/19

So Tuesday kicks in and I feel like I haven’t slept at all. I had my eyes shut, but I literally felt awake all night. I made the cub cry as she ate Sports Mixture for breakfast – apparently she heard me say yes to the question of whether she could! I fell out with the man cub as I left the cubs jacket at home and had to do a U turn on the way to school, traffic was abysmal to work, and I needed to nail a meeting. God – today was the day I wasn’t catching a break.

It got better – I was talked too like a child in the meeting. Now, for those who know me personally you have just sucked in air through your teeth. For those who don’t know me, please suck air between your teeth. I do not tolerate being treat like an inferior. In fact it makes me madder than a box of frogs, so I get sassy and sarcastic. I then got what I needed and left on my heels with my bald head held up.

Back at work, I had meeting, after meeting, after meeting and picked the man cub up in a state of tiredness like I could sleep on a clothes line. I then managed to whack my knee so badly that I could barely walk. It has been the longest day in recent history (!!) and I am done in. Bed is beckoning.

The saving grace of the day was that I got my last card in the series of six for my chemo. ‘Bald, brave and bloody beautiful’. Halfway through today I opened it and could have blubbed right there. I was not feeling the brave and beautiful but I was certainly bald!!!! It made me laugh and feel fabulous all in one go and that is some feat these days. I am forever grateful for my six ‘chemo’ cards that have helped me through (and the accompanying food that came in amongst it!). I also honestly don’t think my support network realise how much I appreciate and love all the little messages, cards, flowers, presents and general encouragement. And much as I am a ‘brush off’ girl and accept them with a nod of thanks, I honestly deep down couldn’t appreciate them more. Its just I know I would break properly if I showed any more gratitude face to face. I’m on a precipice most days and I daresn’t cry in front of anyone as I probably wouldn’t stop and that isn’t cool!

21/03/19

I have cried in the shower this morning, proper blubbed – it wasn’t because I was tired (that probably didn’t help!), it wasn’t because I look terrible (I do!), it also wasn’t because my heating had just broke down (give me strength), but it was because I am sick. Sick of everything. Sick of being tired, sick of feeling like shit, sick of not being able to deal with life itself as successfully as I used too, sick of the endless wallowing in self pity (and here I am doing it again), sick of not feeling like I am being enough for my cubs, sick of putting my life on hold. The list could go on, but I don’t shower that long (the man cub takes longer than I do!) and I had to pull my big girl pants on and give myself a good talking too to be the fierce mama and work face ready (I mean I didn’t do great on those accounts but I made it through!).

I’ve remembered that I am doing the ‘Heart of Darkness’ on Monday and I have to get through the weekend before facing that treat! I’ve fibbed to the parentals that I don’t have an appointment so my dad doesn’t take me as I don’t think I could do the session and then come out and blasé a conversation with my daddy. Because I fully expect that I am going to be broken. And I know I have to do it. But I have done over seven months of this damn journey and much as I have blubbed (this morning!) I actually haven’t broken. Really, really, really dealt with the emotion. I’ve cried – then shut it down. I well up and shut it down, I actually cry and shut it down, I blub and I time it so I have to shut it down. I have a sneaky feeling that my CP is going to make me deal with it and not shut it down. God dammit!!

But I will deal with it. I will have it. I had this week and I will have next week. Because I have got this.

Not my 40th Birthday day

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‘I’ve got fuzzy little chin bones’ – words I uttered tonight, but never thought I would utter at the grand old age of 40!!! Never mind anytime of my life!

It has been a long day. The man cub struggled from the get go. No happy wishes, no cards, no gestures – which is what I wanted; but the pain was etched on his face. He wanted to mark the day at the very least but I was staunch in my approach to it. I felt absolutly dreadful after no sleep, chemo drugs still swilling inside me, looked terrible, and wanted to sleep for weeks. I had no celebrating in me.

I had a couple of messages from people who didn’t know I was postponing, and a few cards. I also got flowers from my bestie – not for my birthday, she knew, but they were just flowers she said!! Then my parentals turned up to take me for lunch with an orchid – again just flowers and just lunch. A normal day!!

I can’t compute though, that ten years ago I was having a meal with family and friends at a lovely local pub, watched the rugby in the afternoon after the parentals were dispatched home, got drunk and refused access to a Wetherspoons (I wasn’t even trying to get in there!!)!! I then tumbled into bed and had a very long lie in the next day.

Ten years and some life changing moments since – a five year old now rules my life and Cancer is ruling my head. Who can anticipate those changes?

I’m pretty sure the five year old took five years in persuasion! Thirty changed my mind on the cub front and the ovaries started twitching. The twenty year old me would have had my tubes tied. The thirty year old me decided that they needed to work. I never knew that I could love someone so much and who would melt my stubborn heart.

The Cancer wasn’t something I twitched for. At twenty eight I had pragmatically dealt with a little pseudo lump which was removed and no issues. Why this couldn’t have been the same I don’t know. Life deals you melons sometimes. This last year I have dealt with two surgeries, MRI’s, mammograms, ultrasounds, chemotherapy, loss of all body hair, sickness, nausea, looking like pure death warmed up. And through it all that little five year old human has being the centre of my universe (don’t worry the man cub knows!) and has kept me going throughout. She is the reason I get out of bed each day and has been my motivation, my desire to keep going, my  light at the end of every day, and the reason behind my tears every time. She was the first person I thought of when I was told I had Cancer and the last person I think about each night. She makes me so happy but also fills me full of my worst sadness.

The man cub and I have reminisced all night, reliving memories over these last ten years. How we didn’t appreciate a lie in as much as we ever should have. The fact that I had a clean house for weeks at a time before I had a whirlwind cub. That we have always been positive and will always ‘try’ to be now. But we keep coming back to the current situation. We try and make sense of it. And we can’t. We are both irretrievably changed and there’s no going back from this now. The day ends a little bit drunken, like it did ten years ago.

16/03/19

After getting through a crazy day yesterday and it being Saturday, I’d asked the cub to play in her room until at least 8.30am if she woke early. She had my digital alarm. She arrived at 6.30am and asked me if that was before or after 8.30. FML. Clock reading is now priority of the near future.

I’ve tackled school shoe shopping today in the biggest shopping centre and I honestly thought I would fall over my own feet at one point. The poor cub ended up getting a mediocre pair of shoes as I had nothing else to give at this point. I am fully planning a day in bed tomorrow to try and prepare for a Monday back at work after chemo, but by, I am so tired. Its so hard to explain to anyone, but even when I had a newborn – those weeks between 0 and 6 when everyone says it gets better (and it does, but they are the longest six weeks in the world) –  I wasn’t this tired. My bones didn’t ache. My head wasn’t in constant conflict. My body wasn’t failing me.

Tonight I have dragged the man cub to bed at 10pm. Unheard of on a Saturday but I have bizarre pains in my legs and just want him to be ready if I need to go to hospital. It is the first time I have ever felt like this, like I might need to do a hospital dash. And it has me in a little panic about whether something is going on in my body. Its like electric shocks riding up and down my legs. I am unsettled. I feel light headed and haven’t had enough drink to make that happen.

I’ve laid in bed for hours, dramatising the worst case scenarios and I need to sleep before I get consumed by this latest twitch. Because I’m damned if I am not going to get through this.

 

I am going to have this night. I am going to have this bloody fight. I really am.

40th postponement in play!!

14/03/19

I have had a hell of a first day following my final chemo! I’ve had a night of hot flushes (those kind where the duvet is off, then back on, then off again, legs out of under the duvet – still holding onto a bit of the duvet in case I get dragged out of bed by the bogey man!). It was the longest night. These nights don’t get any easier though, I tell you what – when it’s dark, and all you can do is live in the depths of your conscious where the little demons bite away at the edges of your positivity. Ugh. It’s brutal. I’ve finished chemo, but I’m not actually done with it. The full on side effects still need to kick in and they are going to floor me properly. Sixth round, and every time it has got harder. It has gnawed away at every bit of me and I become irrational in the moment and forget that I do come out of it. I do see light, and the end of the tunnel. The main problem is everyone (my mother mostly trying to be helpful) telling me that there is an end in sight. Baaaaaaaaaaa. Lack of sleep is the work of demons!!

After dispatching both cubs out to school and work I had an epic sleep through to midday! Lazy, lazy, lazy. So to make up for it I hoovered, washed dishes, cleaned the bathroom, dusted, leather creamed the sofas, cleaned the carpets and then blitzed a work meeting (which involved a lot of finance chat – yay!) in Costa at 4pm. Plus nailed bath time with the cub. Who says chemo drugs can stop you doing stuff!! I’m bloody exhausted but I did it.

However it is now 10pm and after all distractions are done I am now absolutely shattered. And then I have just read a girls post who was diagnosed with Triple Negative Breast Cancer back in 2014 and its just come back.

BAM.

My little positive mood bubble has just burst and I know again that I am going to be changed forever by this damn diagnosis and disease. Am I going to be spending every month, every year, every five years on tenterhooks, waiting for the other shoe to drop? Am I going to have a living dread on every anniversary, every lump and bump, every weird random pain that I have C? Quite possibly. Or in fact quite probably. Which is why I think that’s where I need to do some psychology work on myself. I need to not be consumed by this at every point in time. My wee cub doesn’t need her mama thrown every other week by the C word. But one day after my last chemo, tired and emotional, I don’t quite know how I am going to be pragmatic again. My little pragmatic head, fighting in it’s corner, tells me that when I am in a better headspace and as time goes on it will get easier. I know it will. But when I tear up just talking about it properly I know I’m nowhere near there yet.

My mood is not helped by the fact I am technically 4-0 tomorrow. And I have ‘cancelled’ it. Postponed it indefinitely. I just don’t much feel like celebrating. I have warned everyone close to me that I am not doing this. I do not want presents. I do not want cards. It is another day later after chemo, another day that I need to get through the side effects of the crazy drugs. I’ve also removed the sticker from the calendar so the cub doesn’t notice so much (she will soon start twigging – shes not that daft, but hopefully I can negate the upset for her when it’s watered down).

But a 40th is a big thing isn’t it? A refresh?

Wow, I don’t know how to feel or act or how to keep going sometimes. But I have too. I have that wonderful cub and man cub of mine who need me and (I hope) who I will get to see grow more. I am keen as mustard to see what I cooked grow up and be an amazing human being. I want the pre teen battles (someone remind me of this when we want to murder each other!), I want the teen years (def remind me of this bit!!), I want to see the amazing adventures and journeys that she goes on. I made this beautiful human and with some amazing people alongside me, we are watching an amazing human being grow.

I’m in a funny headspace tonight. A weird little mood, and god knows what tomorrow will bring. But Ill be sure to reschedule the celebrations at some point. Maybe I can shave a year off and head forward into the forties a year late!! I will do it when I have the headspace to not be wallowing though. When I can devote the celebration to being with my family and friends.

Because I can do this. I just need to regroup and attack.

Final chemo!

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13/03/19

Its final chemo day!! Yay!

I anticipated a lie in, but forgot I had left my phone downstairs and left it set for an early work alarm. That was helpful! Then the cub was awake before she ever is (as if she knows!). It mean that I opened a beautiful card from a work colleague who had a way with words today and I was nearly blubbing before the day had started. I’ll get her back for that!!

We did the usual morning madness and then braved the school run before heading to the hospital. We were there at 9am, caffeine in hand when we hit the ward. The girls were lovely and welcoming as always and made a big fuss that it was my last time in there. I couldn’t quite believe it myself. This was number six. Number one feels like an age ago and my hair loss feel like an age ago. We’d bought nice chocs (they put the selection boxes out so I wanted the girls to actually have them) and wrote a card which the cub also put a little message in – that brought them all a little tear as she had said ‘thank you for looking after my mama’.

By 9.30 I had the needle in my hand (first time lucky!) for the last time. After a saline swill the docetaxal was hooked up to me at 10.15 for the last time. As the nurse sorted me out ready to let the drugs drip in for the next hour she mentioned the bell. That bell. The inscription ‘Ring this bell three times well, its toll to clearly say; my treatment’s done, this course is run and I am on my way’. While in my chemo session I have only ever heard the bell ring once and I was midst getting a cold cap applied to my head so didn’t really think about the celebration of the actual event. I remember thinking ‘yay for them’ then being pulled back into my craziness of making a skull cap of freezing cold water fit on my head. I’d also told the man cub that I didn’t want to ring the bell after chemo as I wasn’t technically finished active treatment.

But…. I spent the next hour thinking about it. It was all I could think about. Maybe I did need to say goodbye to this treatment and make a deal of it. The end of another part of this horrible timeline – maybe it would help me put it too bed. I muted it with the man cub who was doing a smashing job of sleeping vertically and he was, as always, supportive of what I wanted and needed. I just wasn’t fully committed yet. As the docetaxal dripped its last drip and I was re-hooked up with saline for what would be the last half hour I spent on that ward, another nurse said she’d start rounding up the nurses.

At that point I felt good pressure to make a sign that I was finished with this part of the journey. My needle removed (nasty bruising and bleeding but worth the pain for a first time effort in getting the needle in!), all the nurses started gathering (well those that could) and I was there – front and centre with proper sobbing tears (unexpected), the man cub recording the event for prosperity and I rang that damn bell. I actually rang it. I announced that I was done. Yes I had more to go through, but I was done with this treatment and I marked the bloody end of it. The man cub had a little tear in his eye too and I know he is run down with the emotion of this too.

We escaped the ward, headed to the car, then realised in our haste that I had ran out without my home drugs (strong strong anti sickness drugs and immune injections). Bollacks. Back we bloody went. We joked as I re-entered the door, but then the joking stopped when we realised that they only had my injections and I’d have to go back at 4pm for my anti sickness tablets. Bloody fantastic.

We went home and both crawled into bed. Physically (me) and emotionally (both of us) exhausted, we needed to have a cheeky sleep. But no – the phone rang. I laid money it was my mother and ignored it. Was just about asleep when the phone rang again. Aaaagh – I’ll kill her. Lay wide awake now, feeling guilty that she might be flapping so headed down the stairs to ring her back. Then I realised the second call had actually been the Doctors. After the mam call, I rang the Doctors and the nurse there advised me that me result had come back saying that I was anaemic. WTAF? I had chemo today. They check that stuff? Should I not have had chemo? Was my immune system too low? They wouldn’t have done it if it was. Surely? I’m now wide awake with every crazy thought buzzing through my head. Nothing is ever straight forward is it?!

Heading back to the hospital for 4pm we hit the most horrific traffic, so I jumped out of the car, trotted into the chemo ward and had a chat with them while picking up my drugs. They reassured me that I had met the grade for chemo today, but of I felt ‘more tired’ (how would I even know if I was more tired? I have never been so tired, even with a newborn!) then get in touch and I might need a blood transfusion. Aaagh, please do not let that be another thing to add to my list. I left clutching the drugs and ready to make sure that I didn’t end up back in there  (I’m about to google anaemia and food that might help it – that surely won’t lead me down a rabbit hole re: C).

So to end my crazy day, I have just done a Parents Evening. This day has been the longest ever. I am sat with the strongest of drugs swimming about inside me and I am tired, and I am trying to look like a parent that has it together for my cub. The last conversation I had with her teacher was back in September and since then I have heard nothing to say that my baby cub is acting any different than usual. After a solid performance (she is absolutely no bother) we collected the cub from after school club and I want my bed. I can already feel the metallic taste creeping into my taste buds (uugh), I have a whopping bruise from the needle.

But I’ve done it. I’ve made it to the end of this chemo journey and its been a hell of a journey (not quite over yet as the side effects will still keep me going for a few weeks longer).  This time last November I was starting out on the unknown journey. Now I know and I definitely don’t want to ever repeat it. Chemo has been harder than I ever anticipated and it has drained me in ways that I didn’t think possible. I am more tired than I ever was with a new baby and I thought that was my lowest point I tiredness. But I’ve managed to still work (quite a bit) which has kept me sane and I might be a bit behind but I’m still going.

Today I have climbed another mountain, and I have done it. I have got this, and I will deal with radiotherapy in the same way. It’s the only way I can keep going.