Life continuing after Cancer

11/02/2020

I’ve been in a really reflective mood of late. I don’t quite know why, but I do know that I am still in a phase of poor mental health and this throws me off course sometimes weekly, but increasingly daily.

I stopped my online posting early December when I caught up my real life story of a cancer journey and completed it with writing of ringing the bell at the end of radiotherapy. At the time, I was a little bit tired and exhausted of reliving the cancer life and timeline (I had written out of synch to my real life timeline so I could be resilient and take some of the painful raw emotion out of my writing). I wanted to be done with it though in December.

However, in reality, that isn’t the case. Cancer isn’t done with me. Nor do I think it ever will be. Because now I think it is part of my DNA. It is who I am, and I have to live with the fact that I have been a statistic. I have lived a journey that too many have to travel. I am now that person that someone else knows had cancer.

I was naïve to think that I would move on quickly. This year was always going to be a year of remembering ‘this time last year’. I’ve done the year since I lost hair, but I have remembered every date of chemo, every appointment, remembered the loss of taste and pure despair that I felt then. I haven’t got to the end of a year on yet, and I hope that next year will be easier with more distance.

What has prompted me to write again now is that I am not 100% well at the moment. I have been suffering from crippling sciatica since the end of October. Now initially, this was a bit annoying and frustrating. High heels were out, flat shoes were in. I yelped every time I got out of my seat at work and cemented the fact in my young colleagues heads that I was in fact an old bugger! Sciatica is not a new experience for me and I fully expected it to ‘right itself’ in a few weeks. Five days before Christmas, when I booked an emergency chiropractor appointment thinking they would miracle cure me was when I realised I was in trouble. To be honest, I was probably in trouble the week before when I raided the old stash of chemo drugs to help pain relief and started a self prescribed regime (not to be recommended at all). I also (having exhausted chemo drugs) started taking the strongest painkillers (over the counter) from the chemist way past the three days recommended before you could become addicted. I was out of control trying to manage pain.

Two chiropractor later and not a lot of improvement, Christmas occurred, Santa arrived, a break from walking anywhere happened, New Year and lots of celebratory drinks may have eased some pain. But still the pain existed.

And throughout, I have spent a lot of time and energy supressing dark thoughts:

This can’t be cancer, it is just sciatica.

What if it is cancer of the spine now and it has spread? It isn’t.

Why would this sciatica last this long? Is it cancer? Absolutely not – you’re just old!

What if it is a lump on my spine that is cancer that is causing sciatica? Don’t be ridiculous.

Why am I not getting better? I always did. Because you are older.

I haven’t worn heels anywhere near as much and I still have sciatica so surely that is a sign something else is afoot? Don’t be a fool, heels were uncomfortable and you have finally recognised that (daft bugger) and you don’t have cancer of the spine.

Ooooh, but this new crazy pain in my arm – what is that? Is it cancer? Probably not.

Should I ring the doctors, the oncologist, anyone; about the crazy pain? Probably not.

Should I just wait until I see the oncologist for quarterly check up in April to mention crazy pain? Yeah seems like something you should wait for.

Hang on – what if you wait and the pain is actually now blood cancer?

Secondary cancer is a thing, what if I have it? STOP DRAMATISING YOU FOOL.

Out of control thoughts now and can’t even control where they end up. I end up in a world of irrational BS and pure utter bollacks. As a stream of consciousness, I appreciate how ridiculous the above sounds. But crazily it has become my daily reality. I have to check it at the door of work and home and I have to battle it back and forth with myself in the car on the way between those two places. If the car could talk it would be checking me into a mental health facility!

And that is what cancer does to you. It stays with you. It haunts you when you least expect. You doubt every sane moment and every insane moment. You doubt yourself, second guess yourself, start diagnosing yourself, and prepare your own eulogy. And as I have discovered you do that a long time after the actual cancer is gone. I see it every day on the secret FB group I am part of, and while sometimes I think I should remove myself from seeing the worry, pain and angst of others, I also know that I have helped some people, comforting others in confirmation or passing on optimism. So I’ll keep going for as long as I can to help those others while not affecting my own state of mind too much.

Because as always, I have this. I have too much going on not to have this. So I will have it.

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Hair loss was a year ago…

19/12/19

So today it is a year since my head of hair was shaved. Well, what was left of the head of hair I had apart from the bald patches that were appearing with frequency at that time. I have kind of known that this anniversary was coming for the last two weeks, and I don’t know why I have kept this moment in my head and really remembered that I needed to mark this day. I managed to leave the house, get the cub dropped off to school and drive halfway to work before my brain kicked in and I remembered.

 

I really remembered. And I cried right there in the car (good job I’m not on the bus this week!). I cried for the memory that I had, the hair that I had and the year that I have had. Christ, it has been an absolute year and it has been such an emotional rollercoaster that I have never experienced in my life. I have known my lowest of lows and also had amazing highs as I have smashed those hardest moments.

So a year ago today, I spent my morning dealing with the craziness of chemo and feeling all of the drugs entering my body. I didn’t have cancer in my body but I was doing all of the possible preventative action that I could to make sure I didn’t get secondary cancer thereafter. I was filling my body full of drugs in the hope that the pesky bugger didn’t return.

 

A year ago today I was also on a downward slope in my mental health. Never had I been so low and so desperate. About hair of all things. At the time it baffled me as I just couldn’t process all of the emotions I was dealing with. Looking back, I think I dealt with the actual day pretty well. I had cried all my tears the night before. But I also spent a long time afterwards bemoaning the loss of hair and the feelings when I looked in the mirror. Today, I still don’t take much joy out of looking in the mirror, but I lather on a smidgen of makeup and try to put a comb over the inch long hair that turns into an unruly mess as soon as I put a woolly hat on!!

 

I can’t say that I dealt well with hair loss. I didn’t. I can’t say that I am dealing well with hair growth. I’m not. But there’s another factor at play here this year and that is sciatica. I have absolutely well and truly been taken down by a bad back!! Now don’t get me wrong, I have had sciatica before (probably since I started wearing very high heels in my 20’s) and usually had it for a week to two max. This time, it started in October and eight weeks later I am at levels of constant pain that I could cry. I even resorted to seeing a chiropractor yesterday to see if they could ‘fix’ me!! All of which has led me to be a bit grumpy, a bit tired and a bit irrational. Which has also made me sad again today. Really sad. Remembering a year ago, I am sad again that I had to go through that. That my family have had to go through that. My saving grace is that this year my cub is sooooo excited and her enthusiasm over the magic off it is beautiful. I can well and truly enjoy it this year (apart from the back pain!).

 

So, I am much more prepared this year (with presents at least – no food bought yet!) than I was at this stage last year. Amazon Prime saved my days last year on Christmas Eve – I think I’ve done better this year (unless I’ve forgotten someone!). Apart from a wee wobble last night reading a FB post of a girl who is on her third diagnosis of TNBC (triple negative breast cancer as I had) in the last five years. That tipped me onto an edge, but I stayed on the positive side of it. I have one day left at work. I have another chiropractor appointment tomorrow (maybe he can work a Christmas miracle!). Then I am done. Five days family time, five sleeps, five counts. Then we celebrate the arrival of Santa, Father Christmas, St Nicholas (as named by the cub, she thinks the names mean an order of things!! God, she’s going to kill me when she realises I have fibbed all these years!).

 

We have made it, we are enjoying life and I am here for the ride.

Active treatment cancer timeline – it’s long….

30/06/18	Find the lump (it’s a Saturday morning – no Docs open until Monday to do anything with this information.
02/07/18	Make Doctors appointment (they don’t work that quickly!)
04/07/18	Doctors appoint confirm it’s a lump (no shit Sherlock!) and make hospital appointment online (again no speed!)
11/07/18	Hospital appointment, find three lumps, one is a cyst (drained – yay), second is scar tissue from previous surgery for PASH, third is a funny lump – but could well be PASH – no worries. Biopsy taken and need to come back for results.
18/07/18	You have Triple Negative Cancer!
	21/07/18 – Cubs Birthday Party 22/07/18 – Cubs 5th Birthday
25/07/18	Mammogram (didn’t get any vision)
01/08/18	MRI and Consultant appt
	05/08/18 – holiday for two weeks – we needed a break
22/08/19	Need a further ultrasound following MRI result
29/08/19	Back to consultant to get booked in for surgery
06/09/18	Pre op assessment (loaded with cold and Nurse tells me she is 11 years clear)
10/09/18	Sentinel node marker (medical physics)
11/09/18	First operation
14/09/18	Breast Care Nurse (BCN) – wound check – all ok
26/09/18	Consultant – not clear margins and 2/5 nodes cancerous (but only over 3 is a problem) – cancer is still there.
09/10/18	Second operation (and my mams Birthday)
24/10/18	Genetics Testing appointment – didn’t understand what was happening!
24/10/18	Consultant – cancer is GONE. All clear!!!!
13/11/18	First Oncologist appointment – terrifying
26/11/18	Pre chemo checks / assessment – you can’t work anymore?!?!
28/11/18	1st Chemo – FEC
	14/12/18 – Hair falling out in clumps 18/12/18 – Decide to shave all hair off
19/12/18	2nd Chemo – FEC (and shave head)
09/01/19	3rd Chemo – FEC
28/01/19	1st Clinical Psychologist appointment
30/01/19	4th Chemo – T (docetaxal)
30/01/19	Genetics results – all clear
11/02/19	2nd Clinical Psychologist appointment
20/02/19	Oncologist check in
20/02/19	5th Chemo – T
	22/02/19 – Find another lump
25/02/19	3rd Clinical Psychologist appointment
	26/02/19 – BCN feels lump – need to see consultant 27/02/19 – Consultant drains cyst
11/03/19	4th Clinical Psychologist appointment
13/03/19	6th (and FINAL) Chemo – T
	15/03/19 – My not 40th Birthday!
25/03/19	5th Clinical Psychologist appointment (Heart of Darkness)
28/03/19	Radiotherapy pre assessment and CT scan
03/04/19	Second CT scan
09/04/19	2nd Radiotherapy / Oncologist assessment and another CT scan
15/04/19	6th (and final) Clinical Psychologist appointment
23/04/19	First radiotherapy
24/04/19	Second radiotherapy
25/04/19	Third radiotherapy
	25/04/19 – Second lump found
26/04/19	Fourth radiotherapy
29/04/19	Fifth radiotherapy
30/04/19	Sixth radiotherapy
01/05/19	Seventh radiotherapy
	01/05/19 – BCN, Consultant & Trainee Consultant check lump (no confirmation)
02/05/19	Eight radiotherapy
03/05/19	Ninth radiotherapy
07 – 17/05/19	Tenth to eighteenth radiotherapy
	17/05/19 – Ultrasound and lump checked – confirmed as another cyst
20- 21/05/19	Nineteen – twentieth radiotherapy – final bell rang

Radio ends, active treatment is done!

20/05/19

Usual early start and second last radio done. It doesn’t quite feel real that I now only have one left. One!! Eeek! An eleven month journey is about to end and it feels like two years not just nearly a year. It has been my living life everyday for the last eleven months and then I need to end it. I’m not sure how I manage that yet and how I’m going to manage it. But it is becoming very real.

In other ways I don’t know where the time has gone. Sitting here now, reading back my previous blogs when I first found out, I can’t quite believe I made it. I have done this and I am so different and utterly changed by this. I can’t think another year has changed my life so much apart from having the cub.

21/05/19

FINAL DAY!! I can’t quite believe it. I walk into the hospital for the last time, get our last coffees and wait the standard two minutes to get called in at that time in the morning. Again, I had forgotten that I needed a clinic check and they were not quite so on the ball. A 40 minute wait ensued and I was proper twitchy. I was twisting my face like a child and had proper ants in my pants squirming on the seat and muttering under my breath.

I was also trying to mask all the emotions I felt inside me at this point. I was desperately trying not to cry in front of my dad (I don’t think he would have coped and I didn’t know if I could stop the floodgates if I opened them). I just wanted to get to that bell and ring it for a second time to end this journey.

I was finally called in, and it was a two minute conversation and check. I was given more cream for my poorly scar that has now broken down with the radio and is worse than the worst sunburn that you can imagine. I am also about to get some letters, which again, I need to wait for. FML. As I sat down in a different seat, I was facing the entrance to the childrens ward and I absolutely nearly lost it. A gorgeous six/seven year old, bald and beautiful, was heading in for some treatment and after she was called in all the waiting area heard were her screams as I assume they tried to either hook her up for treatment or were trying to take blood. I hate this bloody cancer. It doesn’t bloody discriminate. For those who say it’s lifestyle and habits that cause this then please go and watch a child, a gorgeous child who has barely had any time on this earth, go through the trauma. And then tell me that cancer is the persons fault.

By this point my tears were on the brink of overflowing and I couldn’t even look at my dad.

Then I got the letters. I was done. I could leave. I could walk the waiting area for the last time and never return. And I rang that damn bell. I really rang it. My dad can’t quite work technology so I don’t have a video of this one, but I have a photo that will serve as a reminder of this crazy time and that I marked an end to it. The L shaped waiting room residents clapped (as I have done every time I have heard it) and I strode out of there with my head high and no tears.

I got home and went to bed. Woke up at 1pm (pure laziness but I was exhausted) and then just distracted with a lot of household stuff before going out for tea. Flowers arrived from my bestie and they were beautiful and really perked me up. Went for tea and had a couple of wines with some cheers involved. It was well and truly needed and the cub seemed really positive with it all.

I just need to get to Friday – three days time, when I see the consultant from the first hospital that I started at. 11am appointment. The same day as we are starting a weeks holiday. Leaving at 5pm. I’ve got a mental few days at work to get through first (and I am ignoring the Oncologist appt in a couple of weeks time – her news will be positive I’m sure, I can’t even deal with any possibility it won’t be).

Today, my new book for writing in has arrived. No more black book. I was determined the next book wouldn’t be black!! I have memories to make and happiness to celebrate and they won’t be written in a black book. So as I am nearly finished this black book, I’m looking forward to channelling positive energy into my family, house and home.

I had this, and I’ve got the future now. I really do.

Prepping for the last two days….

18/05/19

So because I have a new fancy dress and shoes for the upcoming wedding, the man cub has decided that none of his previous suits (last count – 4) fit / are suitable (I mean some aren’t great), so we need to go suit shopping. Yay. I can’t think of anything better to do on a Saturday afternoon in big town. Nope. Can’t think of a single other thing I would rather do.

Having dispatched the cub to the parentals (my joy would have been tripled having her along for the suit buying experience!) we head into town and proceed to spend what felt like ten hours looking at suits. In fairness to the man cub – he did actually only try the one on in the end. But that was still arduous enough. The matching o the shirt and tie did nearly tip me over the edge. Followed by the declaration that we would also have to purchase a new pair of shoes. Well, we didn’t do that trip by halves!!!

We got back to pick the cub up and it transpires that she may be listening / worried about me / life more than we give her credit for. The parentals had been chatting while she was playing, about a TV presenter who had just come out publicly to declare she had a brain tumour and wasn’t going to be hosting some TV. The cub had told both nannan and daddit to stop talking about that as it made her sad. FML. Break me now child. The more I see little snippets of this behaviour, the more I realise how much this journey has affected her much more than we think. No matter how hard we have tried to keep conversations for ‘after bed time’ or when she isn’t around, inevitably, as is life, she has heard and she has been aware. She’s a savvy cookie.

Radiotherapy hasn’t helped either. Where previously hospital trips have mostly happened when she was at school, and luckily I wasn’t kept in any times, she hasn’t really seen the impact of the actual appointments. Granted, she has witnessed the tiredness, poorliness and looking levels of shit, but she hasn’t ever known what this relates too. Having my dad arrive every morning to whisk me out the house before she’s even got out of her pyjamas has definitely taken its toll. She has known every day now that I am off to hospital. She has entered school with her dada every day (not the norm) and she has carried that in her little head for the last eighteen days. Two more to go baby – then I can get us all back to normality. I’m on it I promise.

19/05/19

Seven of us set off today for a big old hike. Longest one yet and we’re building. I’m a little bit scared. I have the man cub on standby in case I need rescued half way round. But I set out with a 14 mile aim in mind. The cub didn’t want to let me go this morning though. She was beyond clingy, and even more huggy than she normally is.

But the small gang then walked 14 miles (phew, it was hard work, but ok actually). It was a really pretty walk (as always the amazing Audrey had pulled rabbits out of the bag and found a sneaky way out of town and all of a sudden we were in countryside). We all managed it, we all did it and we all felt more confident (well, I certainly did – the others might have already had that, they are all babies to me!!). I’m so grateful that I feel we are getting there.

Then I got home tonight and the cub tells me how sad she is that I have this (cancer). That she didn’t want me to have it. Christ, she breaks my heart. We have had lots of cuddles tonight and I have booked us a table for Tuesday night to celebrate / mark an end to this entire journey. I’m hoping that she will feel like we’ve marked the end and she can also put a pin in this and move on.

I also spoke to my bestie tonight (it’s been a busy old day!) – I needed a hug and I miss having her here. It’s crazy that it has been years since she has been here permanently and that I have never had her apart from a couple of weeks a year since then. But by god her hugs help. Even her virtual hugs help. I am comforted by her voice, by her presence, by her family, by her. But I bloody miss her. She’s the only person that can make me cry on the phone too and I hate her for it!!!!!!

By the time I’ve finally sat down tonight, with the man cub gone to bed, and sat basking in the silence and solitude, I’ve realised I feel a little bit funny about there only two days left of active treatment. I’ve booked Tuesday off (which feels a little bit ridiculous but I feel I need it) for when I’m done. I’ve been thinking about the end of this part of the journey without the man cub and we spoke about it last night (albeit after a few drinks) and whether we could make it work for him and the cub to be there. In reality that is harder to pull off logistically and may be a bit selfish in parts. But I am thinking about the bell. Whether I ring it again? About doing the end of this journey with my dad. About how I am going to feel on the day.  I’m not sure how I feel about not having the man cub there. It feels like I am dealing with the same emotions when I had to deal with the man cub not doing radiation with me. He has been my rock, and obviously continues to be, throughout this journey. It was hard not having him there during radio, especially as his driving is marginally better than my dads!! But the end feels like something we need to share. And he won’t be there. I’m sad about that to be honest.

We have this though, I have this, the man cub and cub have this, my dad only has to park twice more in a multi story car park and try not to spill coffee down himself. It’s all good. And will all be over by this time next week!

Lump day, but good day….

17/05/19

I blumming love an email notification that tells me a parcel is being delivered today. Especially one that is letting me know a beautiful dress and new shoes for the upcoming wedding are arriving. Eeeek. I’ve proper spoiled myself with this – I would never usually have taken the risk with what I’m planning – I’m just praying the dress fits and the shoes are comfy! But the little email has started my day off well!

Then I was only put through the windscreen once today by Norman on the way to radio. Radio went smoothly – these booster sessions are so quick. My new favourite two male radiographers had a bit banter with me about work and my weekend plans. I ended up telling them about my big old walk and the practice we needed to do. They were looking at me like I was madness itself! I sometimes think I must be, but I’m still standing and while I am, I will do everything I can to help others have the support and help they need during this twatting journey.

Today there was no coffee allowed back in the car. I made sure, once I was walking back out of the hospital with Norman that he was necking it and that it was put in the bin outside the carpark!! I’m not taking any more risk with him – I need to get back to work in one piece, deal with some real life stuff and then on to the next hospital of the day. All of this while I am really sore, really really sore. My skin has cracked all over my nipple and the whole boob, neck and underarm is the brightest nastiest red. It literally popped to another level overnight and the itch. My god – the itch. There is nothing that I can equate this too in a pre C life. Absolutely nothing as relentless as the itch. And absolutely nothing I can do about it 99% of my day. Aaaagh.

I arrive back in work (as if it’s another day – nothing to see here – no appointment this afternoon at the other hospital to worry about – nope – none!). Then as is our life I get a call to say that the cub has a swim place (finally got round to this for her – shamefully a bit behind her fellow school cubs, but it has been a busy year!). Over the moon, I ask when she starts – 6pm tonight!!!! Whey aye – I haven’t got enough going on today. Let’s add in a swim class tonight straight after two hospitals, work, after school club. Not a bother!

The man cub picked me up mid afternoon and we made our way back to familiar streets, parking to avoid the crazy hospital charges and making the very familiar walk into the hospital grounds. As we arrived I felt the pit of my stomach churning as I headed down the corridor of doom to the Breast Screening room. It honestly couldn’t be more depressing – no windows, no access to the outdoors, artificial light, and everyone on the edge of their nerves. I have really grown to hate it. Luckily, I was called really quickly by Carol, a sweetheart of a nurse, and introduced to the lovely Richard, the ultrasound guy (I really should understand their actual job titles as I’m sure they are way more qualified than I am making them out to be!).

As Richard talked me through the process (been through this a few times now mate! I don’t need the dialogue!!), he mentioned that ‘if I see anything I’ll biopsy just in case’. I must have lost all colour in my face as Carol grabbed hold of my hand and said – lets not worry yet pet. Geez, as if I wasn’t bricking it already. I don’t need any biopsies today. I don’t need any more waiting. A week today we are heading off on a holiday that has been long awaited and will be cancer free. I am not going to be pissing about waiting for biopsy results. I’m not. I appreciate I sound like my five year old here but I am NOT!!!

After what felt like ten hours but was only ten minutes getting going with the ultrasound wand, Richard confidently confirmed that we were dealing with a pesky cyst, and all the other lumps are normal bits of scar tissue from my surgery years ago. YES. YES. YES.

As I’ve lost weight through chemo and radio he thinks that tissue and lumps are just feeling more prominent to everyone and comparing to previous ultrasounds he can see that some of the lumps (previously confirmed as ok) are exactly the same. YES MATE. Thank bloody god.

Another ten minutes later, a whopping needle again and a jab in the boob followed by a quick syringe cleared me up again. No more lumps. All gone (along with that bloody cancer) and I’m going on holiday. I’m going on holiday cancer free and DONE!

I can’t even tell the parentals that I’m this happy today as I haven’t told them about this lump (or the last) – I mean I kind of had to tell them about the first one, the obvious one!! But I just don’t want to put them through the stress. They don’t need the stress if it turns out to be a bloody cyst. That’s my deal to bear. I don’t need them flapping when I am trying to hold it together. Why worry them if there isn’t actually anything to worry about? (let’s be clear – the cub will be rugby tackled to the floor and pummelled somewhat if she ever tries to keep something like this from me – but I’m allowed to be a hypocrite!!! I’m her mama!!!)

We’ve escaped the hospital (trying not to look too happy as we walked out the waiting room – I know what those other ladies are going through), and we head home to get swimwear gear for the cub. Which is when I realise I have the online food shop arriving between 7 – 8pm, and I assume the swimming is 6 – 7pm (I had forgot to ask!), and knowing our luck (you know all that luck we have?) the shop will arrive at 7pm on the dot. So I have lost the coin toss and I staying in to wait for the shop and missing out on her first swim lesson. I’m sure we’ll take turns going forward and I won’t miss those weeks I don’t go (!) but I’m missing her first one. Agh. Simple life is sought after now. I really would like a simple life.

But – a dress and shoes have arrived! A beautiful dress. Gorgeous comfy shoes.

Pure retro and I bloody love them. In the quick turnaround the man cub had, I tried them on and spin about like a five year old in a fancy dress shop! I mean, bald still doesn’t go with them. But I am spinning round tonight and I don’t care. They look soooo pretty. Really starting to look forward to being at the wedding now – at least I’ll feel comfortable with my dress and my shoes – I’m a big fan of shoes.

Today has been a day of conflicting emotions, but proved I have this. I have two radio left and I have this! I can feel it.

The end is in sight (3/4 the way there)

13/05/19

Day 14 and I’ve managed to  break the skin on my boob on the way into the hospital as it is sooooo bloody itchy. The bad boob is also now so swollen due to the radio that after the weekend they are both actually a different shape for the scan. Which means a lot more rejigging on my back, on the machine to get me in the right place to blast radiation at me. I was so bored with it today I was probably the most compliant patient they have ever had as I just turned into a floppy doll and got dragged about for fun.

But I am sore now. Like really bad sunburn sore. Itchy sore. After sun won’t touch it sore. Want to take layers of skin off your own body sore. But my focus remains – the man cubs birthday is the 25th, we plan to go away the Friday 24th. I am aiming for that with everything I have.

14/05/19

Just realised today at day 15, means I am three quarters through. What I failed to realise is that I get a clinic check before my ‘booster’ sessions for the next five rounds. The clinic check happens straight after my radio session (albeit a small wait) to check my skin (getting ruined), to check how I am (getting ruined) and to explain what the booster week (5 days) entails. The nurse (a trainee with a supervisor making notes in the background) declares that my skin is holding up well (cheers pet – it’s itchier than a bad case of cramp, so yeah, doable), I’m not that red (seriously more red than I was when we went to Sri Lanka), and the scar is holding up well (I mean I had a C section with my child, this was a small one in comparison, I should hope it’s holding up well). So all in all, I get a clean bill of health at this stage. Great – I’ll just rock on with my final five days now and be done with (please let that be it).

Also been thinking today about upcoming  Friday and the second (third) lump check out. I can’t quite deal with it being anything but a cyst; but if they decide that they want to check it out further I am going to tell them to crack on with that without me as I am away. We are away. AWAY. HAVING FUN!!

This afternoon I’ve knocked a cheeky 2.5miler in with a friend. A bit natter and walk helped the black cloud lift somewhat, then I reclaimed the carpet in the cubs room which had previously been held captive by all the s**t (sorry – toys). Shamelessly I have then had a nap. Who am I – a nap???? I seriously don’t like this now, but it is the only way I can keep functioning. I have never done naps in my life before this, but I need them more than ever now. And I quite enjoy them! I set the alarm for 3pm and wake up at 4pm (totally ignored the first alarm and didn’t set the snooze!!). -My head tells me I need it, but by body tells me I am lucky, my head then tells me that I’m spoilt! FML. I will do what I need to do.

15/05/19

Its a Golf, Norman, a goddamn Golf. Could park in the smallest of car parking spaces Norman. It really could park itself Norman. Give me strength.

So today, it took four – YES, FOUR!! – times to park the car. I love my dad but dear god, we are getting into unknown territory of fury with him! He is so sweet, but this is grinding my teeth right down.

SO today is Day 1 of the booster sessions. Day 1 of Day 5 – seems like a good last countdown now. Five days left and I can get this done! The cub is also counting me down with full excitement each morning when she sees her daddit and waves me goodbye.

Today was the first day I have also had two male technicians in the radiotherapy room since the first poor little boy in the planning session. And then it literally took me longer to get undressed and dressed again than the actual radio session!!!

Returned to work and today, as part of #mentalhealth awareness week, the office participation today was to do post it notes for other staff to tell them positive things about them. There was a pile on my desk, and I couldn’t read them. Then I did read them and could feel the tears prickling. So I put them to one side. I’ll read them later. When I can read them without breaking down. I have four days left now and I can’t face breaking. And I have Fridays check up on the lump yet and that may break me. So I’m going to keep it all contained for the minute.

So I’ve come home tonight and nearly been tipped over again. Seriously my cub has my life!

The conversation went:

‘Mama how do you spell afility?’

‘I don’t know that word baby. What’s the context?’

‘I am trying to write ‘to mama, I love you for afility years because that’s the biggest ever.’

‘You mean infinity darling, its I..n..f’ (bloody hell – pull at my heartstrings why don’t you baby. I bloody love her so much).

 

I still have this. I’m still keeping it together and I am nearly there!

Long walk and revelations…..

09/05/19

Day 12 of radio and a later appointment didn’t help me today. It was a random 9am instead of my usual 8am but I have had the worst sleep since I had chemo.

I honestly thought I was going to fall over horizontal on the radio bed after the long drive in as it was trashing in commuter traffic. The Receptionist remembered my name before I got to the desk today – ‘you’re checked in’ – it threw me so badly. Becoming another stat is one thing. Becoming an actual name is another. Ugh.

I’ve decided that today I’m going home after the radio sesh. I need more sleep. I have decided to look after me and get the sleep I need. My head is totally overcompensating for being positive, for waiting for the final days to countdown, for the ultrasound that I still need, for the incompetence of my doctors. I’m too tired to string together words today!

So home, and sleep. Sleep mask on (I tell you what, these are revolutionary in my life for daytime sleeping – as a total hater of napping, I never understood how you can sleep in the day, now I can block out daylight and sleep on a bean pole!!). When I wake there is a letter from the hospital! Yay – I have an appointment for my ultrasound. Whoop.

Then nope… The appointment is 9am on Monday. The same time I have just rearranged all of my booster sessions too. Of course it bloody is. WHY?!?! So I ring, get it rearranged and it is now next Friday, eight more days. Give me strength.

Once I pulled myself together I headed into work, solid meetings, home to get child, bath time and headed her off too bed. She was being particularly belligerent tonight, and when I told her that she didn’t need to have the last word of every conversation, she stated ‘but I’m only five mama, and I don’t know everything yet’! She knocks me over sometimes!!

10/05/19

So Day 13 , it is Friday and I am ready for the weekend. I have radio, due a call from the docs and a day of work to get through before I can have a few drinks and put the world to rights with the man cub. Two of my favourite lady radiographers joined forces today and they are just so lovely. It’s the little things like chatting while they pull me about, while also making me feel human and not just another piece of paper.

Get back into work, and having my lunch when the Doctors called. Following up on my complaint. And I cried. In work and I bloody cried. Primarily out of frustration. So my Doctors have been in touch with my Oncologist – her who had said that I could go back on the pill – who has now decided that because she’s facing a bit of a challenge from my Docs, she’s going to back down and has provided another letter saying that on reflection there isn’t enough evidence for me taking the pill and it not having negative side effects in terms of future cancer. So I definitely can’t have it now. I’m frustrated that the original nurse at the Docs is now a little bit justified, I’m frustrated that I don’t know if me taking the pill in between would have a detrimental effect, frustrated that the coil or sterilisation is my only option. I would need the mirena coil which can only be done by Family Planning Clinic – I feel like I’m a hormonal teenager again! Sterilisation seems a tad extreme considering I’m very likely going through the menopause so will be a mute point in a year. But it is so frustrating that I am now at an absolute impasse because everyone around me can’t keep a straight story going. After all I have gone through in terms of my treatment I have trusted every decision made (apart from the radio blip – same Oncologist) and now I am starting to have a real mistrust of the medical professionals who are supposed to be helping me. I can’t process all of this now as my wee brain is too tired, but I will process it later.

FML – why can’t one day be drama free? Just one day. I spend the afternoon fibbing to friends and family that I am fine, but I am a wee bit fed up.

12/05/19

After a quiet Saturday yesterday, I have decided today to take myself out for a longish walk. I am still reeling from the conversation with the Doctors on Friday, the fact I am waiting for next Friday to look at ‘the lump’ and trying to get through the tiredness that radio and full time work is dropping on me. I’m also trying to work out where I fit in being a mammy because my poor cub is missing me – I mean I am here, I am giving out all the hugs and all the love, but I am also absent because my head is away in the clouds trying to process things that I just wish I didn’t have to.

So, I become more absent (!) by tramping out on a walk. A walk that I scoped out, approximated, and then told the man cub that I would be a ‘few’ hours! Off I went…..

After a fight with rapeseed in a field where I got a little bit disorientated, a backtrack in a field with horses (I don’t like them after one kicked me when I was little and stroked its rear end!), and a walk through what appeared to be a deserted house and land, but had several Alsatians in cages that barked quite loudly at me, I suddenly realised that I hadn’t really considered my safety. I hadn’t told the man cub where I was actually going and ridiculous thoughts of me being kidnapped and murdered in the wilds of the rolling hills near where I live became rife in my mind. WTAF. Why would my mind get into this. Pre C I wasn’t ever the biggest drama queen. I would be the pragmatist in any situation. Given the worst case scenario I would always say ‘and?’, which my staff team love, but I don’t ever usually revert to worst case unless I know it is an absolute given. And here I was on a walk, in my own space, listening to a podcast, and thinking about my own demise (albeit not through C but through other devious means). Bloody hell, I need to get a grip of myself.

After a good tramp along an old railway line (which was well walked by non-murderers!) and a walk back through my local woods which I am more than familiar with having walked them over 12 months of maternity leave with a small cub strapped to me, I made it home alive (shock horror!).

But I have been left with some vulnerability from this. Before it would have probably taken a lot for me to get spooked by being a lone walker, out by myself, in the middle of nowhere, just having a walk. When I think of all the nights I took taxis by myself, slightly inebriated from town to home, got them to drop me down the street so the parentals didn’t hear the car and snuck into home – I never thought about my safety. I’m not sure I would have put it high on my radar now without a C diagnosis. But everything is heightened for my cub. I need to be safe, I need to be here, I need to be around and I want to keep it that way. I feel like I have suddenly realise that I am not infallible. And that does make me a little bit sad. But maybe it makes me wiser. (P.S. I did 8.5 miles in 2h, 44m. I’m getting more confident now – not fully there, but certainly more confident!).

Because, I will keep going with this damn journey. I will have this. And I will be stronger.

Things (!) are failing me now…..

07/05/19

Day 10 – HALF WAY!

Yes, yes, yes! I have made it to the half way point of radiotherapy. Which means only ten days left of active cancer treatment. My dad hasn’t killed me off with his driving. I haven’t killed him because of his driving. I am managing radio as best I can and I am, for all intents and purposes, back to fighting fit for life (full time work, full time mama, full time partner).

But, as predicted, my legs are bloody killing today. Actually full on pain, that I have felt before but that was when I had run the Great North Run (13 miles). I literally walked half of that yesterday and I am in the same amount of pain. Geez, how am I possibly going to do 26 miles in two months? The panic is now setting in and a bit real.

Radio today was a bit of a weird one. The door on the radio room wouldn’t shut properly which is quite a significant problem! So I was delayed going in and then after being welcomed in, lined up in the perfect spot half naked (and freezing cold!) there were workmen not 10m away behind the screen trying to fix the door. I mean, if trying to stay still for the minutes usually was a pain, staying super still for what felt like 20mins was a special challenge. Once we were done though and I had redressed, I found out I’ve had my last five booster sessions changed from the ridiculous time of midday back to 9am each day. Thank goodness. So I can now  continue life through to the end like I am just rocking up to work late!

My hair is also due a special shout out today – there is a level of fuzz that has take over my head and that can only be described as a bit weird! When I say head I don’t just mean my scalp either. Its fluff everywhere – I look like a bloody gerbil!! I’m starting to get a little bit excited though that it is coming back. Thinking about how I felt now when I lost it, I’m now on the other end of the graph and rising back out of the slump.

08/05/19

Day 11 and today was a challenging start to the day. Four attempts to park the Golf today. In a car park that has a lot of bays free at 8am. But four attempts to reverse. Four. ‘Its a BLOODY GOLF NORMAN, A GOLF’. He then whinged about the Jeep and the people carrier that were parked near him and wondered how they parked it. Well, for starters Norman they have parking sensors (although I don’t think even they would have helped today), secondly THEY AREN’T SMALL SPACES!!!!!!

Back at work after a hospital incident free morning today (and no more car dramas), I blitzed a big presentation and decided as I was on a roll, I would chase up the damn Doctors who haven’t responded to my complaint (which has peaked my anger significantly!). The Practice Manager rang me back and admitted that the docs were covering their arses and want more from my Oncologist to say I can resume the contraceptive pill. They are chasing and the original nurse has actually put some effort into following this up. However, I explained in no uncertain terms that she shouldn’t have a job in the healthcare profession, due to her uncaring attitude to those in her care.

So transpires now that I will get a call by Friday to ‘sort me out’! Thank bloody god for that! So I head home to hope that I have a letter for an ultrasound for the second (/third) lump – remember that one – yeah, it’s still there!! And I am still waiting. Of course I am. These last two days have tested my calmness to my limits. I haven’t got annoyed at the NHS service in this journey, but these last two days have been a little bit testing.

And my boob is still itchy, itchy, itchy. I CAN’T itch it in public! Aaaagh!

But 9 days to go. 9 days. 9 more days of dad driving, but only 9 days.

I am feeling a reflective mood kicking in now though, and I can see it in my thoughts that I lay bear. I am revisiting a time line and keep saying ‘this time last year’. I can’t imagine what I am going to be like with actual anniversaries of stuff. I keep dwelling on the length of time I have been absorbed by all of this, when I should be focussing on the fact I am nearly out of this. I am going to end active treatment in 9 days, but I know I will end this chapter but start a new one. A changed one. One that I didn’t order on any shopping website or channel! One that no-one voluntarily orders. Before I would have lived blank pages going forward and made my own destiny. A destiny that I work hard for but my own nonetheless. Now I feel like an element of my life is already taken over – that little area of my mind that was carefree and didn’t think about health and wellbeing much is now a little but crowded.

But I have this. I really do. And I will not let these ‘things’ get me down.

Bank Holiday weekend!

04/05/19

Its a Bank Holiday weekend!!!!!!!! Whoop! And only eleven days of radio left. Whoop Whoop!!

We took the cub out to a climbing and trampoline park today. Usually, I don’t buy into the fact that we have to do an activity every weekend and have to pay to make memories, but over the last few months I have felt like I owe her fun. And to have fun means leaving the house (I am no fun in the house as I am tired and end up in bed). I feel that if we go out I have to make a concerted effort to get through it and that in some way I am making up to her my absence in other ways. I know that sounds utterly ridiculous. Writing it down feels ridiculous. But if mama guilt of a full time working mama was prevalent before, it is even worse now. Never have I felt so absent in her life and like I am letting her down.

Tonight though, the man cub and I have laughed and laughed. We were talking about an upcoming wedding that we need to consider outfits for and again, more words I thought I would never utter just tumbled across my lips. As blasé as you like I just uttered ‘I’m not sure dress shopping will be successful, I don’t think anyone ever designs a dress that goes with bald’!! We were absolutly creased!

We’ve also had a late offer of overnight babysitting tomorrow night. I am over the moon – a bank holiday with a Sunday drinking session could be on the cards. The man cub just wants to sleep though!!

05/05/19

After an afternoon of shoe shopping that wasn’t for me (furious), the cub has been dispatched to the parentals, and the man cub and I are free to go wild. Which in reality meant that we procrastinated for about two hours about whether we were going out, once we decided we were going out, what were we going to wear, and how would we get there. You can tell we’ve totally lost sight of a good drinking session over the practicalities of how we achieve this. I’m pretty sure I used to be able to go out at the drop of a hat before having a cub. We are so sad.

We made it out and spent a lovely few hours people watching, had a good chuckle like we used to about fashion choices (and I should be put in a box for that!), and observing other couples and their dynamics. We were back to being us – not mama and dada for one night – just us as a couple. The couple that fell in love, have worked through a good few years of the trials and tribulations of relationships and having a small cub, but we are still those two people who decided to hook up many moons ago and have a laugh at life together. We just need a reminder sometimes. I also don’t think we give enough credit to how beautiful it is that we commit to us as a couple every day. It isn’t an effort, because it is so comfortable.

06/05/19

Rocked out an amazing lie in today! No guilt. No phone or tv used with a cub as a distraction while I nursed a hangover/wanted more sleep. Nope, just a lovely long lie in and a natural wake up time! Loved it. But I was missing her, so off I went to collect her. Yep – the car journey back reminded me of what I did not miss – incessant talking for the full twenty minutes and I could have taken her back!! (I honestly do love her, she’s just a bloody talker and doesn’t have a filter for quiet time yet!).

So I decided this afternoon that I needed to do a little walk to keep building the practice miles for my big walk! It had nothing to do with removing me from the relentless talking from the cub! Absolutely nothing at all so I told the man cub And off I went. 7.67 miles blitzed in two hours at a 17min mile pace. Not too shoddy considering I’m still dog tired from radio / full time work shenanigans. I’m fairly happy with that. But I know I’m going to feel this walk tomorrow. I absolutely think my head dictated this walk and I walked like I used too. My body might have different thoughts about it after a nights sleep!

We’ve also watched the SAS Stand Up to Cancer special on the TV tonight. We’d done really well just watching the celeb bit of the programme where they do the SAS challenges, and avoided the ‘personal’ stories that pepper these programmes with the aim of making you suddenly so sad that you reach for the phone to donate your house. However, we didn’t fast forward a bit where a young girl was chatting innocently about her cancer journey. It was all so beautiful, she was beautiful. She had got married to the love of her life after being diagnosed, it showed a few bits of the horror of chemo, and then………. The footage took an horrific turn when her wife ended the short clip by saying that she had lost her battle and cancer had taken her life.

Well. That was heart breaking.

I realise tonight that I am never again going to watch these stories without feeling gut wrenching pain. Without being grateful. Without being thankful. Without being sad. I have always been a crier with stories like these (don’t tell everyone, but I am an absolute softy), but now I am crying for me and mine. I am sad that cancer has infiltrated my life. I am sad that my precious people are sad. I am mad that we have to bear this and these stories are now so much closer to our existence. There are absolute moments of ‘why me’. Equally, seeing these insights into others who have battled or lost battles with cancer, have took me to depths of despair. My darkest thoughts seem to come alive when I see these losses and it takes everything I have to remain in the moment. To remind myself that I am still here and I am still living life.

Because I will have this. I have eleven days to go until I can say I am done with active treatment and I am going to own it. Absolutely.