Black Friday.

Friday 17th May

Oh my goodness. What a day. What a hellish day. Starting with Wayne vomiting through the night and it becoming apparent in the early hours he was in no state to be my chauffeur today. What the hell do I do? Every single scenario runs through my brain – taxi? Cancel appointment? Friend to drive? Sister to drive? Nothing really works, especially at 5.30 am. SO, it’s clear I just have to get in the car and drive myself. After all, it’s only one appointment and then I can come straight home and chill, right? WRONG! May I just add at this point, yesterday we spoke to Swindon hospital to discuss the option of seeing an oncologist there (to confirm we were doing the right thing travelling up to the Marsden today) and, lo and behold, it seems there is a cancer queue in Swindon. Apparently, a 5-6 week wait to see an oncologist, so not a good place to get cancer if there is one. Therefore, I’m even more determined not to cancel today and off I drive. Floating down the motorway in a haze of determination and anger (at husband!), I made it with time to spare for a welcome cuppa and gathering of thoughts. I seem to be feeling a little more comfortable in this hospital now. Not sure that’s a good thing though. I think mentally I’m trying to treat it as a normal hospital to take the sadness away from it all. However, I’m still obsessed with wig spotting out of sheer curiosity and entertainment.

So, in to see oh-wise-one, the great O. Well there’s certainly no mincing of her Irish words. Tell it like it is why don’t ya. Like a slap round the face, she paints the grimmest picture possible. Chemotherapy talk to seriously put the frighteners up you and then talk of the future: apparently, the next two years is critical and, if I make it through that, I’ve done reasonably well. Then onto five years….. yada yada yada. H.E.L.L.O… Instead of scaring the shit out of me, more importantly, I’d like my scan results please! So, off she pops to get them. Uh oh, here we go…  Mrs O returns to the room with a nurse. Holy Shit! You know something is wrong at this point. A friendly smiling nurse in case you completely loose the plot with the news they are about to deliver.

“Your bone scan is fine Nicola…”

Ok, so what’s the big deal here?

“…However, there appears to be a problem with the CT scan. It is showing a small mass on the liver, probably just a haemangioma but, never the less, we have to check it out.”

Right, so hold on a minute. This, yet again, has just gone from being a routine appointment to serious shit in 10 seconds. Don’t you know it’s a Friday and I have to face the M25/M4 yet? It’s now 12 o’clock. Yet again, C is being a huge inconvenience!

SO, off I plod for an emergency MRI scan. Gutted. Really thought I’d got away with this scan in particular. Having experienced one in the past, it’s like a bloody pneumatic drill circulating your head. No chance of relaxing, no nodding off and certainly no room for lovely songs in the head. The earphones make it just bearable. Despite that, I still press the panic button within 3 secs.

“Yes Nicola?” comes the nurse’s filipino voice through my headphones.

“It’s my wedding ring – it’s vibrating!”

“It’s ok, Nicola, don’t panic - that’s fine. Try and relax”.

Relax? He’s having a laugh isn’t he? What with the deafening noise and the annoying breathing activities I am instructed to do, that’s virtually impossible. Although he did comment at the end “Nicola, you did very well”. Round of applause for me.

After the scan, Mrs O takes pity and lets me go. She agreed to phone me later tonight with results and carry on our curtailed consultation on the phone. Suits me – it’s 3 o’clock and I’m tired.

So, I drive all the way home lost in thoughts that I went up this morning with breast cancer and I’m now driving home with breast cancer AND liver cancer. Bloody marvellous. I had no idea I was going to pick up another passenger en route! Another shattering event in the world of C.

My lovely sister greets me on arrival home with Lila clapping and waving. Husband still in bed. Grrrrrrr.

This surely has to have been the darkest day yet, BUT, I’m very happy to tell you that the day ends well. The news is good. No liver cancer for me today. The relief is enormous. Can I go to sleep now? NO – you now have to pack for your family to go on holiday in a few hours of course! Ahhhh yes, of course. 

The trouble is.......

Thurs 16th May.

All my sentences seem to start with this at the moment. The trouble is………. I can’t lift this, it hurts, I’m so tired, I can’t do this etc. Even Tilly is doing it: “ The trouble is Mummy, I absolutely can’t walk up this hill as my legs are broken!”

So, the trouble is this bloody C thing is taking over my life! I’m trying to keep busy (whilst resting at the same time ha!) but I’m feeling so dizzy – as in scatty. It’s official, C brain is worse than pregnancy brain and I’m not even sure that went away so double whammy! I’m distracted, sleep deprived (way more torturous than a newborn) and forgetful (did I just forget how sleep deprived you are with a newborn?!) - I’m forgetting birthdays, plans/arrangements, even to answer questions. And I forgot Tilly’s homework, which made me feel like the worst Mummy. Oh, the guilt – I’m already feeling like I’m a rubbish Mum at the moment - so out of touch with the school and what she’s learning about each day (let’s face it, I don’t hear much from Tilly!). I guess it’s no different to working full time though. I forget to ask people how they are – I’m sorry. I’m sorry to my husband for not asking how he is. For not comforting him when he needs it. I have very little left to offer him. My emotions are all over the place. Sadness comes out of nowhere, engulfing, followed by tears. I can’t trust myself to talk to people in public without crying – in fact, dealing with the wider public is a challenge.  As for the school playground, yikes! – can I trust myself not to cry? Will I ever recover? Will my brain return to some level of normality? Please bear with me people whilst I’m living minute by minute, hour by hour as the big, wide world whizzes past my eyes. Sometimes it’s like I’ve got on the wrong bus and got a one-way ticket to C world. Let’s hope I can find my way home real soon.

The trouble is……….the high (from yesterday) didn’t last very long. I’m now feeling angry. Angry that I’ve had to have this god damn operation. Angry that I nearly got away with it – two lymphs, that’s all. Not that I want more - I’m truly grateful but it was oh so close! Instead I have a knackered arm and a lot of frustration from not being able to do much. SULK!

The trouble is……….we are on count down now. Two days until Scotland and tomorrow I have another trip to the Marsden to meet the Oncologist – Mrs O. And, for good measure, today Lila is teething horrendously and she’s been sick. Tilly wet the bed (for the first time in over two years, poor little love), my wound is still leaking (come ON stitches) and I’m still omitting radiation so haven’t been near the kiddies this morning. It’s all a little too much. But I need to focus on packing and somehow getting this family to Scotland on Saturday. You know today feels like C is a tornado (sorry for another weather reference). It picks you and your life up and then dumps it, misplaced and jumbled in an unknown land. Everything feels out of reach, disconnected and quite impossible right now!!

And lastly.... The trouble is I’m totally freaked out by the amount of people who have had or are currently being treated for breast cancer. Each person I talk to about my story knows at least one other person who’s had a diagnosis. And so many young women. I’m sure the latest statistics, when released, are going to blow our minds. Why oh why is this so common?

Sorry, this seems like a real rant. Tough day - Rah rah rah.

C Whisper: If you are facing surgery and it’s an option, go and stay with family or friends for recuperation after the operation. Trying to rest with children is tough – there is never any peace and quiet and it’s hard to hear others struggling to look after them. I love my children dearly but I am craving a little quietness, calmness, time to myself, time to reflect, review my life, take stock and process all the information swirling around my head. That said, the little imps are certainly a welcome distraction at times.

Here we go again.......

Wednesday 15th May – Round 3 at the Marsden.

Another 5am start. I accept full responsibility for these hideous early starts as it was my choice for referral but, that said, it’s bloody hard when the alarm goes off and I haven’t had much sleep! Another quiet trip up the motorway with matchsticks in the eyes, both lost in our thoughts – or perhaps Wayne was just concentrating on staying awake!  Today they were anxious thoughts - about what we will discover this time. Nearing the hospital, it all becomes too much and I completely break down. I was scared again. Fear of the unknown.

Schedule for today:
CT scan.
Radioactive Injection for bone scan.
Holistic therapist – massage.
Bone scan (2 hrs later).
Meet with Surgeon – results.

On arrival, I drool a little watching Wayne eat some breakfast… humph! Nil by mouth for me – bone scan instructions! It’s important to feed the driver though, right? Then straight to CT for cannulation and scan. It’s the half polo mint where, mid way through, they inject you with dye, which proceeds to give you a hot flush and a weeing sensation (I hadn't by the way), followed by a few breathing instructions. All pretty straight forward though – check, able to cope with that!

Next stop: radioactive medicine. More needles - this time the radioactive fluid. A little sting and then a funky fluorescent yellow wrist band. I’m off to my own radioactive festival - yey! Actually, me and half the hospital, I’m sure. I was glowing more than Lila’s glow-worm ha. Then, the bombshell: “Just to remind you, you should not go near children or pregnant women for 24hrs.” Hold on….. no one warned me of this. I’ve got TWO children just for the record. Can C get anymore inconvenient? Just marvelous. It’s 11am now so no good morning cuddles for me tomorrow… Sad face.

Thank goodness, I’m booked in with the lovely holistic therapist next for bit of pampering. Yes, that’s right, a back massage sandwiched in between all this horrible, invasive stuff. Sadly, it didn’t feel too good as she kept touching my numb arm - however, it’s a lovely thought, nicer surroundings and I get stocked up on more aromatherapy smelling salts (she makes up a concoction as to your needs – major sleep issues in my case!). I’m rejuvenated and ready to go again (sort of), but starting to feel a little jaded by now, which actually is just as well as it’s bone scan time. What a weird one. Lying on the narrow couch, they prepare me for the what’s coming…
“Nicola, we need you not to move for the next 30-45 mins while the scan is taking place.”
Well, anyone that knows me will understand the enormous panic that came over me. NOT MOVE?? That’s near on impossible for me for 1 minute let alone 45!! Jesus. Immediately I got an itch, then another and another.
“Ok Nicola, the scan is beginning.”
Heeeeelp! Then suddenly, out of nowhere, as if someone had placed headphones on me, my head filled with the most beautiful song, stuck on repeat.

http://www.youtube.com/watch?v=CJA69C6SlRk

I completely zoned out, persuaded the itches to go away and even managed to nod off for a micro second. The sheer and utter exhaustion had its plus sides. Hoorah, job done.
Last stop of the day – meeting with the surgeon. Nerves and jitters swallowed me up but she didn't keep us waiting with the good news that she had successfully managed to cut out all the C. Major phew – this means no more ops. Next good news – the C spread to 2 out of 20 lymphs. Could be a lot worse, right?
We also learn:
Name of cancer: Invasive ductal ER, Pr, HER2 negative = Triple negative cancer. Mmmm have been advised not to Google this.
Its aggressive (surgeons words)
Stage 2.
Grade 3.
2.8cm tumor.

Then the dreaded statistics: We learn if the cancer returns, it is more likely to return to my liver, lung or bone than anywhere else. I have a 20-30% chance of its return. Apparently, that is good. Sounds shit to me.
And finally, they address the wound. Apparently, the leakage I’ve experienced puts me in the minority - what should happen is that your body reabsorbs the fluid. Mine, on the other hand, decided to make a little hole in the weakest part of the wound and discard the fluid this way. Nice. So, two surgeons in the room examining me – and I detect they are feeling a little sorry for what I've had to go through – come up with the brain wave of re-stitching! Mixed feelings about this - relieved as I really thought they were going to whisk me back to theatre but, on the other hand, cross as I was pretty over needles at this point in the day. However, if there’s a chance it will work – bring it on! Lots of deep breathing, local anaesthetic and seven bright blue stitches later and we are rockin right outta there!

I’m on a bit of a high (if that’s possible in C world) – I think I’m just so pleased that it was only 2 lymphs and that they got it all out that I completely glossed over the stats side of things. Wayne, on the other hand, isn't. He feels devastated at the talk of the C returning and comes out feeling shaken and low.
We hit the road and stop off for well-earned pint - first drink, I may add. Ok, so I couldn't wait for Scotland but did do a good couple of weeks - pat on the back!!  Yet again, we fell into bed with our heads swirling. 1-0 to C world for frazzling our brains…again!

Hopes and fears

Cancer has bought many things to my life already. It's also made me very thoughtful and distracted. It can become very consuming at times and I often find myself lost in its strange and traumatic world.

So, any excuse to write a list. 

Some hopes:

I hope the length of time I forget I have cancer increases over the weeks. One day, before surgery I found myself grocery shopping, concentrating so hard on what we needed, I actually momentarily forgot all about cancer. It wasn't until I was at the checkout and I wondered why I wasn't at work and then suddenly.......dong...... it me like a bolt, again! But that short head space sans cancer was awesome!

I hope my family and close friends are not too sad. I don't like to think of anyone feeling sad, especially loved ones. Telling people my news is incredibly emotional but also a little nerve racking as you never know what their reaction is going to be - and, let's face it, cancer brings about some strange reactions! Telling my Brother was hard. Somehow I knew he would take it on the chin but that didn't stop the nerves and emotions building up. We met in Bath, he listened well and then he responded: "I'm so sorry Nic, this is just not fair. Hey, look at that top Ferrari over there!" Yay, Rupert. So grounded and caring. He oozes so much kindness and has an amazing capability to be so practical in any crisis. Phew.

I hope my arm fully recovers. Give me a caesarean over this any day. The numbness is hard, from the shoulder to the elbow, like part of may arm is missing. From the experience of caesareans I know it can take years to return - I am still numb around Lila's wound. In fact, let's face it, I'm just one big numb! The lymph wound is sore too. Not unbearable but enough to remind me constantly that it's there. I just want to be able to lift little Lila again.

I hope my boob fully recovers! 'Big ouchie' as Tilly says. The scar looks neat which is my positive. 

I hope I can run again soon. Weirdly, I was all set to run the race for life in July. Now it looks like it will be mid chemo boooo. However, big up to the village people Amy, Katherine, Ber, Jane, Natasha and Becky who are running/walking instead. I'm so proud and LOVE hearing the tales of the running training ha ha! I hope to be at the finish line to see you all come in.

I hope we can muster the energy, physically and emotionally, with the drs go ahead, to go to Scotland next week, on our pre-cancer booked holiday with some dear friends. Right now it feels like a challenge, 2 kids, 2 suitcases, a buggy, a car seat, a booster seat, 2 pieces of hand luggage - and I can't lift. Not forgetting this is all after a week involving 2 day trips (usually 5.30am start) to the Marsden - scans, results and meeting Mrs oncologist (Mrs O). No pressure bionic Wayne! Surely THEN on arrival we deserve a glass of wine?

I hope I stop leaking soon - perleeeease!

I bloody well hope I am cancer free and don't have to face the trauma of surgery again.

Enough hopes? I could go on and on....but here are some fears to enlighten you ha ha.

I fear cancer. But I am not going to let it know! Aromatherapy, candles, music, relaxation, walks, therapies, family, friends and not forgetting blogging are all helping to soothe this fear so I can become strong and keep a fighting spirit.

I fear bedtime - nightmares of losing my hair, being riddled with cancer, all the cliches. I want my serene bedroom back.

I fear the unspoken fears - death, dying and morbidity. There, I said it. How far am I to brush with these fears? They are there, they are real but I am trying to push them out. 

Chemotherapy and Radiotherapy. They put the fear of god into me. I am scared, frightened and wish I didn't have to have them. I'm scared of losing my hair - every single hair! Although everyone tells me it means the treatment is working. Yes, but I'm still scared! Plus, I have no idea about penciling in my eyebrows! Eeeek! Rachel? On a positive note - no extortionate fees for having highlights in the near future! 

Despite the fears, I do try to remain positive. However, I would just like to say it's hard. In fact it's just not possible to be positive every minute of every day. There are times when you just can't muster it - you're tired and the fears creep in. Cancer swallows you up. That said, I am a positive person and I will try not to let the negatives get the better of me but please understand if some days it's hard to smile. 

So, yesterday was not so good. I failed with my plan, no walk and lots of tears. By the afternoon, though, a special delivery from our lovely neighbours - 3 (yes 3!) different indulgent desserts - and a visit from my new cancer mate, Jed, armed with a gorgeous garden pot, saved the day. Ha ha, old friends and I have a standing joke about new mates. And Wayne is groaning at the thought of new cancer mates. "Do we really have room in our lives for more people?" he says. Is this a man thing or a Wayne thing? He would happily not see anyone for weeks ha ha!

So finally, one more hope - I hope I don't double in size from all this C kindness

No plans today, just some music and dancing therapy:

Favorite song so far:

http://youtu.be/Ib_eW9VSUwM 

Although Lila wanted this next one on replay ha ha: Or was it just Wayne's special dad dancing that she loved?!

http://youtu.be/F6fQnTyEniM.   

Plus, I did manage a walk (hoorah), listening to the most beautiful birdsong.

Who knew dandelions could be so beautiful? xx

For the love of God

I am falling apart at the seams, literally. I am springing leaks regularly. I need super gluing or, as Polly says: "we can use the cork from our bottle of wine if that helps?" Ha ha - luckily, I still have my sense of humor... I think! When I move my arm, you can actually hear the air coming out of the holes. Surely that can't be right?

As if not lifting for 4-6 wks wasn't impractical enough, I feel like I can't go anywhere. I guess I can liken it to waters breaking in the fact that you don't know when and where it's going to happen so it catches you unawares. It's ridiculously.  messy and most traumatic! So, as you can tell, I'm completely over this whole C bullshit right now. It's all a huge inconvenience in my life. I'm way too busy for this - I've got better things to be doing, like planting vegetables (don't get me started on that one!) Last year a washout and big baby bump, this year Cancer gets in the fucking way. Big SIGH. Plus, how the hell are we ever going to get to Scotland next Saturday if this carries on? Can you imagine the panicked hostesses on the plane if it starts mid flight? I'm seriously starting to regret the Marsden's decision not to use a drain - apparently they go in and out of fashion, currently OUT. Rahhhh rant over! Tears brushed aside. Onwards......after all, at least I didn't see the sunrise today. 5.45am was a little too late.

So, plan for the day: Well, thanks to Mum, Emma, Martin and Sarah, the kiddies are taken care of so we can have a bit of R&R, with no doubt a bit of lymphatic fluid sprayed in! A spot of gardening (me dictating of course!), trying to stay positive, no tears, not googling, not reading cancer books... or maybe just a peak! And perhaps a movie (Thanks, Mum, for Life of Pi)... Oh, and not forgetting a mindful walk, if I can manage it in between leaks ha!

Just quickly: on the children note, isn't it ironic (cue song, Darren) how, as parents, you long in desperation for someone to take the kids off your hands, just for a few hours, so you can be human again, re-meet your husband, have time out, an undisturbed bath etc. And now it's happened, we don't want it. Well, that's not true as we need it, but we'd do anything not to need it and have the house back to normal, without this unhappiness and stress. I want the craziness of Tilly running around, Lila yelling for attention and FOOD, waving at everyone in between and Wayne tearing his hair out, complaining he doesn't have a life anymore. Dear god I want normality.

Mindfulness in the deep dark Oaksey woods.

Helloooo big wide world of Oaksey! Today I am up, pottering and venturing out for a spot of gentle exercise. We have recovered (ish) from the stress of the wound scenario and are very grateful to Mum for dropping everything and rushing over yesterday and taking the reins again while we both collapsed, literally. 

My dear, wise colleague, Bernie, has told me about 'mindful walking' and how I need to be practising this. Apparently, I need to be 'earthing my feet'! So, as running appears to be a distant memory, I have nothing to lose.

Here's a description for anyone interested:

Walking Meditation #1: Focus on Your Feet

This technique is very simple, making it great for beginners. In this method, the focus is your feet as they touch the ground. Your eyes are aimed a few steps ahead, and your mind is cleared of all thoughts and emotions extraneous to your keen awareness of each foot, as you place it on the ground. With each step, you focus your attention only on the contact of your foot with the ground, and when your mind wanders from this focus, you bring it back to your foot. You could actually practice this form in your own backyard, or even indoors, as you can walk in a circle or back and forth in a line.

Walking Meditation #2: Focus on the Six Sensations
The second way to practice walking meditation is similar to the first, with a slight variation in focus. Once you've mastered the first technique, you'll be ready for a little more challenge. You focus only on the sensations of your feet, noticing the pattern of lifting, pushing, and dropping of your feet as you walk. Eventually you will notice all six of the components of walking—raising, lifting, pushing, dropping, touching, and pressing. As you walk, you will notice that your mind will inevitably wander from this focus. The skill you work to develop is to refocus your awareness to the sensations of your feet, observing each component, each time it takes place. You can even chant the components softly as you walk. Obviously, a walking meditation beginner would probably not be able to power walk, as the goal of walking meditation is to calm the mind, not send it spinning.

www.finerminds.com

Well it lasted all of 30 seconds - never been one to easily clear my mind ha! But I will practice. Yes I will! Instead, I became completely absorbed in the most beautiful flowers and aromas so I suppose it was a meditation of sorts. Sensory overload, bluebell heaven, heady scents and lots of pictures.

Are the potatoes in yet?

Poor, poor Wayne. After a busy day of catering for some dear friends, the children, the shopping and the taxiing around, he then has..........a hysterical wife at 10.30pm at night. As if he hasn't seen enough bodily fluids in our house with a 5 year old that regularly missed the loo (yes it happens to girls too!) and my waters unexpectantly breaking in bed at 4am. Well, there's another one to add to his collection. A fountain (yes literally!) of lymphatic fluid (serous fluid) just as we climb into bed. Good lord......seriously? Why at night time? What the hell do we do? Yet again, he was so calm, reassuring and soothing to my anxieties. I was so frightened. Will it be an impromptu visit to the Marsden tomorrow?  I am beginning to think that this journey is going to constantly throw things our way, up in the air, or from a great height!!!! Humph! More sighs, more tears! I need to learn to tame my emotions, urgently. And no, Mum - Wayne still hasn't got the potatoes in yet ha!!!

Note to self: try not to have hysterical phone calls with friends at 8.30 am. It's no good for either of us!

Surgery

Today is D-day. Alarm goes off at 5am. the downside of the Marsden is the journey. I'm not complaining though - to me it is worth it. We leave at 5.30am, silence in the house, a beautiful sun appearing and the birds in their cheerful chorus. A silent but anxious journey, M4, M25.

Weirdly, I'm very in control of my emotions - just thoughtful. The formalities are done, I'm injected with radioactive fluid (as you do) and I wait on the bed watching everything the nurses do. Then the inevitable "Nicola, it's time for you to go to theatre". I fall apart, quietly. The nerves get the better of me and I have a tearful farewell to Wayne at the theatre doors and then just sob as I climb onto the bed. I'm sure the Anaesthetist has me marked - yep, another hysterical one, extra calming drugs for her! And then nothing.

It takes a long time to wake fully - I drifted in and out of sleep for what seems like hours. Then came the blow. The cancer had spread so they had to remove my lymph nodes as well. I'm devastated and cry... again. What a fucker!

I was oblivious to time though and somehow it's evening before we know it. The Anaesthetist certainly did his job, after theatre for 4 hrs I was stupendously knocked out from all the drugs. So much so we had to stay the night. Grrrrrr. This I was not prepared for. Well, practically yes (suitcase and all) but emotionally no. It was set to be the worst night of my life. Mentally scarred. I was moved onto a 4 bed bay, two of us recovering from surgery and two older ladies clearly suffering and having chemo overnight. Nothing prepared me for their vomiting, their coughing, their nightmares and sheer suffering - and, finally, their intense snoring. My friend had tried to warn me and advised me to plug my headphones in. I even doused myself and pillow in Lavender and sprayed calming spritzer all around but this didn't help (but might explain their coughing?!) Eventually, at 4am, I begged the nurse for some more knockout drugs. The Junior Dr was too scared to give me any more. All she could muster was 1mg (yes 1!!) of lorazepam. Why thank you! I was blessed with 45 mins sleep. Enough to gain my sanity again and be ready to face the day ahead. Not so sure about the future though.

However, despite my trauma, I cannot fault the care of the Marsden. An NHS hospital with a private feel (apart from the 4 bed bay). A visit from a massage therapist, Wifi, free personal TV etc. Thank you.

That said, we were still ready to get the hell out of there. The consultant came to discharge with their usual post op advice, plus instructions not to lift for 4-6 wks. Pardon? But I have a baby. Really? That's such a huge fucking deal. Double SIGH! More tears. Then (as if it couldn't get any worse) came the words that surely every Mother fears to hear from a medical practitioner: "And I think it very wise that you limit your alcohol to small amounts." Even the nurse made a comment - in his broad Scottish accent: "Does she have NO idea what you are going through?" Seriously? Give me a bottle right now!
Apparently, a recent pregnancy and 9 mths of breastfeeding weren't torture enough ha! Oh hell, is this the beginning of cancer changing my entire life forever? Lord.....PLEASE not the wheat grass. Green tea yes, wheat grass N.O!

So, now for the recovery. The hardest part being my war wounds. Before I was so well (which is definitely one of the oddest things about cancer), I could pretend nothing was wrong if I wanted. I was still running around and living a normal'ish life. Now I have a constant reminder something is not good. A constant reminder about the Cancer.

C whisper: 

1. To anyone who is unfortunate enough to spend time on a Cancer ward (or any ward I guess), arm yourself with supplies to ease the soul and calm the mind, enabling your sanity to remain intact. 

2. Get as much help as possible in place for when you come out of hospital, especially if you have children - and especially if you have your lymphs removed.
3. Shave your armpits and legs, wash your hair etc before surgery as that's all an unbelievable pain in the backside right now. A 10 minute shower took me 1 hr 10 mins. How can that be? Argh! What has happened to my life?

4. Have faith in your Dr.

5. Beg for drugs.

6. Get a god damn cleaner. 

Dear sleep

It's been a while. As I sit and watch another dawn break, I wonder where you are. Over the last few days you seem to have disappeared  You are erratic and sporadic and worse - when you do appear, you bring your friend, Mr Nightmare. I do not like him! Please end this relationship and come home, calmly and peacefully. I LOVE my bed and want my bedroom to return to the tranquil place I can rest and recover in. 

Amen.

Can Cancer bring happiness?

I am constantly so overwhelmed and touched by all the love and help we have been receiving on a daily basis. I just want to spend some time thanking each and every one of you - family and friends, near and far - for all your kindness, care and thoughtfulness to help us through these tough times. A dear friend, who thankfully has come out the other side of cancer, once said to me "it's as though people just want to wrap you up and make you all better". It's true. It feels like Christmas and birthdays all rolled into one (if that makes any sense) - without the excitement! I have received such an array of thoughtful gifts, delicious food parcels, veggie boxes, flowers (so healing), smellies, dvd's, chocolates, money, an ipad (oh the squeals!!), pretty painted toenails and many delicious cooked meals. In fact, Sarah, your fish pie reminded me of the lemsip chair - it felt like a big warm hug all over, so much so we made it last 3 nights! Not forgetting all the invaluable practical help with the children and general day to day running of our lives. Plus, I thank you ALL from the bottom of my heart for your messages, cards and voice mails - I listen and read every single one of them, they mean so much to me and I can't tell you how much it brightens my day to hear from you all. I'm sorry if at times I haven't replied - please don't give up on me, please stay with me along this journey.

I know it's cheesy (I'm sorry but something is responsible for turning me into a big cheese - not sure if it's blogging or cancer?!) but, from now on, we are calling it cancer kindness. And we have oodles of it. 

Even more so now I strongly believe that everything happens in our lives for a reason. For us, it's like we have been set up to best cope with our situation. Don't get me wrong, surely there can never be a good time to get cancer and having a 9mth old is pretty tough - in fact the whole thing is bloody tough - but the build up to this: moving back from the Middle East; settling into a new village; Wayne becoming a house husband and me returning to work (NHS) on almost full time hours - all of it seems to have put us in the best possible place to battle with the news of my illness. Also, I have no doubt now that the people we meet on our journey of life all serve an invaluable purpose and contribute to our well-being. Everyone we meet has a different quality to add to our precious lives.

I am so eternally grateful for my life, my family, my gorgeous children, my friends, our home - but, most of all, for my husband and the fact that he is home with me and can wipe away my tears and hold my hand through this nightmare roller coaster experience. I want to say to everyone - and I know it's not always possible but, if you can - appreciate what you have. Because I now look back at my life and realise how wonderful it was and within one split second it's been turned upside down. The sadness C has brought upon us is tragic. I want my old life back. 

That said, as consuming as you are, cancer, there is still some happiness in my world thank you very much! You will not destroy my spirit and love of life - my army is too big to allow this! However, you have given me something new to add to my 'to do list'- FIGHT CANCER!

"Count your age by friends, not years, count your life by smiles, not tears."

John Lennon.

The girls

The two little lights in my life....how my heart aches when I look at them and wonder why they deserve to have their Mother taken ill.

Lila aged 9mths - blissfully ignorant and building a special relationship with Granny and my sister, Emma, during the days we are in London. She spends her days waving at anyone who will pay her any attention. One of the hardest times so far has been the brutal, abrupt stop to the breastfeeding she so enjoyed. Don't get me wrong, I am so grateful to have managed 9mths feeding for her but being told by a Dr to stop that day just completely destroyed me. As if the diagnosis wasn't enough, I then had to cope with the physical agony of going cold turkey, 2 weeks of hell - pain, cold flannels, hot flannels, cabbage leaves, ibuprofen, paracetamol, no sleep and boobs made of rocks. Then the emotional pain of Lila looking so forlorn, her big blue eyes constantly looking at me, wondering what's missing in her life, sucking her thumb and being generally sad for days. With her dairy allergy too, more stress over what to give her. But we did it. And she now takes her milk like a princess, little sips here and there, in her own time. Tilly has even been known to give it to her out of her porcelain teacups and Lila loves it! So, for now, she is happy again. And still waving.

Tilly aged 5 yrs - not so ignorant. Struggling a little with life. Apparently doing so well in school and saving all the emotional, behavioural stuff for her parents. We agonised over how and what we tell her for days. Finally, we decided less is more. So she knows Mummy is poorly with a sick booby and has to see the Drs to make it better. For now that is fine. We will address other issues as they arise. But life is not normal for her, visitors are in her house daily, constant stream of flowers, cards, etc. And presents for her. She now almost expects everyone who visits to bring her something - yikes! Tilly too is building up relationships with Granny and Emma but it is harder to explain to her why she is off to stay with Granny...... again. She is very good at making us feel so very guilty.

Tilly - "But Mummy I haven't seen you for so long" 

Me - "Don't worry darling, as soon as Mummy is stronger we are going to spend lots of time together"

Tilly - "But Mummy I will be too old then and have my own baby"

As hard as it is for me, I know I have to focus on myself at this point and remind myself that wherever she is she always has a BALL!!

C whisper: Telling your children about cancer and illness is such a personal issue and every family will do this differently. We were given a book:

Mummy's Lump - by Gillian Forrest and Sarah Garson

This was not for us at this point in our journey but may well help other families in similar situations.

For Darren, Zoe and the other SITC lovers :-)

http://www.youtube.com/watch?v=SSFFe1cVwgU

Now, I hope this works - please post if it doesn't and I'll try again (not very good at technology). This is meant to make you laugh not cry, ok? For the SITC fans, our generation, it brings a little humor and love to C and, believe you me, I have been in a couple of situations: for example, Bath Market last weekend, when people I haven't seen for ages mentioned how well I look... Seriously, I was biting my tongue not to reply like Samantha!

The Royal Marsden

On the day of the diagnosis I knew one thing. I wanted a referral to the Royal Marsden - the world leading cancer hospital. The long painstaking week waiting for the results had given me time to research and I thank my kind colleague, Bernie, who made me aware of this hospital.

We chose the Sutton site for practicalities and traveled up on 24th April. I couldn't have been more unprepared. Wayne seemed to take everything in his stride and tried hard to busy himself in his book. I, on the other hand, just stared - at everything and everyone, subtly of course. Trying to guess who the sick ones were in couples, examining everyone's hair/wigs, analysing all the nurses to work out if they would be empathetic enough and trying to get a glimpse of the Drs for a little reassurance. seeing the children, the adolescents, the drips....... at one point I cracked, begging Wayne to take me back to the country and saying that coming here had been a mistake. But, he calmly and confidently reminded me why we were there...... and I went back to my staring.

What I can tell you is that the time we spent in the hospital was quite an incredible experience. The nurses couldn't have been more caring and appropriate with their care and my surgeon was everything I could have asked for - if that makes sense. We came away with so much knowledge, a library of information and again our heads where spinning. A grade 3 tumor, lumpectomy needed, lymph gland testing, chemotherapy and radiotherapy discussed. It's official, we were on the conveyor belt of cancer treatment. We were exhausted. The journey home was in silence.

So, for now, the sun is rising, the children will be waking and it will soon be time for school. I wonder............how many sunrises will I see on this journey?

In the beginning.........

Firstly, I would like to explain that I am by no means a writer and I won't pretend to be one. I will leave that job to my lovely friend in the village (who will remain anonymous until I get the ok) - she is the writer and IS going to be famous one day. I am the girl who had to have my degree essays edited by my dear friend Sally! Sal, I promise I won't get you to edit this ha ha but feel free to point out my grammatical errors along the way! Lets hope my English doesn't let me down too much. In fact, maybe a spot of editing isn't a bad idea. Anyone? On a serious note, I am just trying to tell my story. 

Secondly, I have no idea about blogging. This is a learning curve for me so let's hope I improve with time. Let's face it, I should have plenty of it over the next few months. Right now though it's something I feel I need to do, it's cathartic, a way of getting all the swirling chaos out of my head! A way of communicating to loved ones, facing my fears and, of course, keeping myself busy.

I aim for this blog to be encouraging not sad. It will have facts, feelings, the highs, the lows but I hope it will also have positive energy, humour, inspiration, tips (C whispers - things I wish I'd known or things I've learnt along the way) and knowledge for others, especially for other Mums who may also find themselves in this emotional tsunami. I know I'm not the first mother to ever get cancer but I want to help get breast cancer talked about.

So I begin. A few weeks ago my life was calm(ish), happy and satisfying. With a 5yr old and a 9mth old things were busy but fun. That said, it had been a little turbulent trying to make life changing decisions..... Wayne was to become the house husband and I was returning to work full time, well almost - I'd arranged a 3pm finish on Fridays to give me a head start on the weekend. The lead up was hard, quite stressful in fact. Both desperate to establish our new roles, Wayne especially anxious about the impending change and wanting to get it right for the girls. It lasted one week. Our lives were then set to change forever with some shattering news. An unexpected diagnosis of grade 3 breast cancer seriously rocked our world. This was not in our 5 yr plan! This was not meant to happen to me. I've just had a baby for goodness sake. Isn't that enough to be going on with? Enjoyably, I have worked for the NHS for years...... and now I'm on the other side, a patient. Why oh why oh why oh why?

At the forefront of my mind is my family. My dear husband. Having nursed me through 2 ceasareans and the bereavement of my Father, hasn't he done his fair share? Doesn't he deserve a break? In sickness and in health - surely its time for the HEALTH part? And my poor brother, sister and mother. Surely we have been through enough? Mum - at the young age of 70 is it not time for me to look after you? Instead your daughter has called upon your mothering skills once again, just when you thought it was time to retire!

So, the story goes: lump (found by chance washing in shower), GP, referral, biopsy, ultrasound and mammogram, diagnosis.

The Biopsy was hard. Firstly, it's painful (although they numb the area, you are sore afterwards) and invasive. The machine makes such a loud kerlunk noise that you jump out of your skin! Secondly, I just knew there was something wrong. Seeing the lump on the screen (SO different to previous fibroadenomas) and the consultant radiologists skirting around the subject in her conversation. 

After the biopsy, I was then directed to a surgical consultant to be told "we are very concerned by what we have seen today." Really? Hold on........somehow things had gone from being a routine check up to serious shit in the space of 10 secs. Emotion swept over my body like a tidal wave and, before I knew it, tears were streaming down my face. Panic spread across his face - he now had a women crying in his room - what was he to do? Pull the emergency cord ha ha? No, usher me out to the nurses of course!! 

I could barely breathe, literally. I felt winded, blinded and shaken. I felt the ground giving way beneath me. So much so I had to be taken into another room to compose myself and discuss things with a female Dr. She was trying to be encouraging and reassuring but she couldn't say the words I wanted to hear - "don't worry, I'm sure it will be ok". I just knew deep down in my heart this was not good. The consultant even asked me to bring someone with me when I came back for the results. It was like he was preparing for the worst, like he knew.

The next week was a living hell. I couldn't sleep, focus or relax. I tried to work, keep busy but it was hard. I googled regularly - that was a mistake. I went round and round in circles, one minute so positive, the next fear and dread. The not knowing was absolute torture. The only positive thing was it gave me some time to research treatments and arm myself with a bit of knowledge, just in case. But how the week dragged on. Then, finally back for the results, delivered calmly by the same male consultant: 

Dr - "I'm afraid it's not good news. We have found some cancer cells in your biopsy."

Me - "Ok, do you mind if I get a pen and paper out, I think I may need to take some notes!"

Wayne didn't speak. I had tried to prepare him for bad news but he was in shock. And he remained that way for days.

So here we go..... This is the start of my Breast Cancer Journey.

Timeline so far:

10th Feb 2013 - A breastfeeding Mummy - Mastitis (or so I thought at the time).

Early March 2013 - Lump found.

8th April - Ultrasound, mammogram, core biopsy.

16th April - Results - Invasive ductal carcinoma ER (hormone) negative.

17th April - Stopped breastfeeding.

24th April - Royal Marsden initial consultation

2nd May - Surgery - Wide local excision and axillary clearance.

3rd May - Home

15th May - Bone scan, CT scan and surgery results.

17th May - Oncologist and scan results.

C whisper: So far I have learnt many things - after all, this is likely to be a long, steep learning curve - but I think the most import thing is to surround yourself with people you love, people who love you, warm people, kind people, funny people and, most importantly, positive people - they are invaluable.