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….

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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!

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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….

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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….

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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)

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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…..

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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.