Inspiring and motivational poetry

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Don’t Quit

When things go wrong as they sometimes will;
When the road you’re trudging seems all uphill;
When the funds are low, and the debts are high
And you want to smile, but have to sigh;
When care is pressing you down a bit-
Rest if you must, but do not quit.

Success is failure turned inside out;
The silver tint of the clouds of doubt;
And you can never tell how close you are
It may be near when it seems so far;
So stick to the fight when you’re hardest hit-
It’s when things go wrong that you must not quit.

~ Author Unknown ~

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If

If you can keep your head when all about you
Are losing theirs and blaming it on you;
If you can trust yourself when all men doubt you,
But make allowance for their doubting too:
If you can wait and not be tired by waiting,
Or, being lied about, don’t deal in lies,
Or being hated don’t give way to hating,
And yet don’t look too good, nor talk too wise;

If you can dream – and not make dreams your master;
If you can think – and not make thoughts your aim,
If you can meet with triumph and disaster
And treat those two impostors just the same:
If you can bear to hear the truth you’ve spoken
Twisted by knaves to make a trap for fools,
Or watch the things you gave your life to, broken,
And stoop and build’em up with worn-out tools;

If you can make one heap of all your winnings
And risk it on one turn of pitch-and-toss,
And lose, and start again at your beginnings,
And never breathe a word about your loss:
If you can force your heart and nerve and sinew
To serve your turn long after they are gone,
And so hold on when there is nothing in you
Except the will which says to them: “Hold on!”

If you can talk with crowds and keep your virtue,
Or walk with Kings – nor lose the common touch,
If neither foes nor loving friends can hurt you,
If all men count with you, but none too much:
If you can fill the unforgiving minute
With sixty seconds’ worth of distance run,
Yours is the earth and everything that’s in it,
And – which is more – you’ll be a man, my son!

~ Rudyard Kipling ~

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Barter

Life has loveliness to sell,
All beautiful and splendid things,
Blue waves whitened on a cliff,
Soaring fire that sways and sings,
And children’s faces looking up
Holding wonder like a cup.

Life has loveliness to sell,
Music like a curve of gold,
Scent of pine trees in the rain,
Eyes that love you, arms that hold,
And for your spirit’s still delight,
Holy thoughts that star the night.

Spend all you have for loveliness,
Buy it and never count the cost;
For one white singing hour of peace
Count many a year of strife well lost,
And for a breath of ecstasy
Give all you have been, or could be.

~ Sara Teasdale ~

moon art

Invictus

Out of the night that covers me,
Black as the Pit from pole to pole,
I thank whatever gods may be
For my unconquerable soul.

In the fell clutch of circumstance
I have not winced nor cried aloud.
Under the bludgeonings of chance
My head is bloody, but unbowed.

Beyond this place of wrath and tears
Looms but the Horror of the shade,
And yet the menace of the years
Finds, and shall find, me unafraid.

It matters not how strait the gate,
How charged with punishments the scroll,
I am the master of my fate:
I am the captain of my soul.

~ William Ernest Henley ~

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The Sisterhood

 Many women have found a lump,
a little dimple, a teeny bump.

 But to hear the doctor say the worst,
is enough to make your bubble burst.

 No one knows the thoughts the fears,
but one who’s shared those very same tears.

 It’s a special group who knows this scare,
A Sisterhood who is always there.

 To help you through the beginning stage
of anger, fear and endless rage.

 They’ll talk you through the loss of hair,
or burning skin, for they’ve been there.

 Through relentless tests that never end,
they’re there with hugs and cheers to send.

 They’ll gather together for there’s lots to do,
with faith and hope, and prayers for you.

 It’s a genuine bond for they truly care,
this Sisterhood that’s always there.

~ Linda Nielsen ~

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How I felt losing my hair

For most people (except for my gorgeous hubby!) hair is such a fundamental part of our personality, it affects how we feel about ourselves, how we’re able to go about our daily lives and how we present ourselves to the world. Having a full head of healthy, beautiful hair can be an expression of individuality, a symbol of fertility and makes us feel more attractive and confident. Of course, we take all of this for granted, until there comes a time when it is taken away.

Losing your hair is difficult for anyone of any age or gender, but as a woman I have found it extremely hard – it’s part of who I am, how I present myself to the world and to me, it’s what makes me feel feminine.

Hair loss is much more than just a visual and cosmetic problem as I was soon to find out – it affects people emotionally too. Compared to those unaffected, people who struggle with hair loss have a more negative body image and are less able to cope with daily functioning. Hair loss can also be associated with low self-esteem, depression, introversion, and feelings of unattractiveness.

IMG_1098I had tried as hard as I could to mentally prepare myself for losing my hair, but in reality nothing can really prepare you for how it feels when it starts to come out. Two weeks after I’d had my first chemo treatment my scalp started to feel a little tingly and a bit itchy. In the days that followed, I noticed quite a few strands coming out and then almost a week after when I washed my hair, absolutely loads started to come out.

I burst into tears and couldn’t stop crying. I wanted to be as strong and as positive as I could be trying to deal with this whole experience, but I think when I started to lose my hair all the feelings and emotions I’d had inside about having cancer all came bubbling up to the surface and out like molten lava from a volcano. I became even more aware of my situation and started to deal with the emotions perhaps I had been previously more numb to. I felt like I was grieving for my hair, and grieving for the person I used to be. The reality of the start of this process was much harder than I ever imagined.

As silly as it sounds, having lived with having cancer and all it has encompassed and its low points for over 5 months of this year , I think it really hit me that I was officially a cancer patient – soon to be balding – no disguising the fact now. I felt down at the bottom low.

Right now as I write this it is a gloriously sunny day and I feel down right miserable. I love being outside in the sun and I can’t even do that due to photosensitivity from the chemo. My hair is falling out and very soon I know I’m going to look like the a typical ‘cancer victim’. I’m supposed to be going out today to a friend’s house for a birthday gathering and all I want to do is stay at home and not go anywhere or see anyone. I know this is not healthy for me as I need to have the courage to go out into the world and face people, and I’ll have to do it without any hair very soon, but it’s the way I feel today. Why did cancer pick me? What did I really do to deserve this sh1t?! Well I know that’s a damn stupid question because nobody in this world deserves to have cancer, it’s just sh1t bad luck. If by me having it I can reduce the statistical chance of my husband, one of my family or my friends having it then I’ll take it for the team. It still sucks.

I’m completely infatuated with other people’s hair. I look at my friends who have lovely long flowing locks, and look people in the street and on TV who all have amazing hair and I’m insanely jealous. I will never complain about having a bad hair day ever again. In fact, I won’t be complaining about a lot of minor and unimportant things in life again.

As the days turned into weeks, more and more hair continued to come out. There would be hair on my pillow, it would collect around my shoulders and even just by touching it, it would come away in my hands. The whole experience takes you right down to zero and it really rocked me to the core psychologically. I didn’t want to see people and I didn’t want people to see me either.

I stopped washing my hair so frequently – each hair wash was a form of torture – a bit more of me washing down the plughole. It magnified and intensified everything and brought all sorts of emotions to the fore. I’d psych myself up each time I washed my hair, telling myself that I could do this, that it was okay and that I would be alright. I’d take a long deep breath before looking in the mirror and would be scared of who was going to be looking back at me.

It may have been easier if I’d just shaved my head, I know other ladies have found this to be helpful – to ‘take back control’. I’d have to plan it strategically as I certainly didn’t feel like drinking alcohol for about 2 weeks after my chemo treatment, and I definitely wasn’t going to be shaving my head without the aid of a glass of wine for dutch courage! But I just didn’t have the balls to do it. I also thought I’d try getting my hair cut in a ‘pixie’ style, I felt all brave and empowered one day when I booked the appointment, but then I chickened out at the last minute, I just wasn’t ready yet.

Everyone says to you ‘it’s only temporary, it’ll grow back’, but that doesn’t really help when it’s actually happening, when it’s your world and it’s all too consuming. I can’t really imagine that far ahead into the future at the moment, when I’ll have hair that resembles something normal, or near to how it was – I’m just taking each day as it comes.

Thanks to my dear friend Lou and the kindness and generosity of my amazing friends, family and work colleagues I have been able to get two wigs. One is synthetic and a darker shorter style and the other a longer, blonder, real human hair wig.

The first time I wore the synthetic one out of the house I needed my husband to come with me. It felt so odd to be outside the house wearing it, it was unreal. But the comfort and support of walking next to Pats made it a lot easier to bear. The first time I wore the human hair wig out I was by myself. Check me out! It was an unbelievably scary experience – I felt so vulnerable and exposed.

For that first trip out in my human hair wig I actually wore it to the opticians. Brilliant, pick a place where you need to get up really close in front of someone why don’t you Allie?! As I walked up the crowded street to the opticians, I literally felt like I had one of those big lottery hands pointing down at me or a big neon light above my head with “She’s wearing a wig!” emblazoned on it. Although of course I have no doubt whatsoever that nobody batted an eye lid that day.

I got into the shop and sat waiting for my appointment, tapping away on my phone trying not to make eye contact with anybody. I was called into the eye testing room by a young chap, and the  whole time I was thinking, he knows I’m wearing a wig, what on earth must he be thinking. I felt so silly – it’s like being a pubescent teenager again with all the worries and hang ups you have about your body.

Through the powers of twitter I recently came across a young lady called Nalie Augustin. If you are someone who is facing the prospect of losing your hair or who already has, or who is just having a tough time in your cancer treatment I’d thoroughly recommend listening to her TEDTalk. I found her so inspiring and it’s hard not to be uplifted by her spirit, courage and outlook. She also created a hair dairy showing her hair growth every week for 22 weeks following her last chemo treatment – it’s amazing to see.

The more light hearted side of the hair situation is that I now get to choose which persona I want to be each day when I put my wig on! I really feel the need to name my wigs, but am yet to do so – I would love to know your thoughts?!

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Re-excision operation

I didn’t feel anywhere as near as nervous going into hospital for this operation, as the third operation in as many weeks this was starting to get old hat!

I had been called the afternoon before by a lady to say I was third on the list and so I could go in at 07:30 instead of 07:00. Half an hour extra is a long time in the morning 😉

Pats took me to the hospital and we waited in the waiting room. After only about 10 minutes I was called through to see the nurse. Blimey that was quick! I felt bad for the people who obviously had been sat waiting for much longer than I had!

The nurse went through the paperwork with me – it was much quicker than last time as I’d definitely be out later that day. I then saw my surgeon and she explained what she was going to do – go back into the same scar again to remove the additional tissue. I asked her why there was a lump that felt hard there and she said it was because that’s where they’d taken the lump out and that there was a seroma there – a collection of fluid where they had operated. She said this was good because it also indicated to them exactly where they needed to go in.

I saw the anaesthetist who was a lovely Italian lady with a cheeky sense of humour. She said they’ve give me some paracetamol, I’d then go down to theatre where she would ask me the same stupid questions again – not because she’d forgotten the answers but to double check again who I am. She’d then give me some ‘champagne’ and off I’d go to sleep!

I sat back in the waiting room holding on to the extremely fetching embolism stockings they gave me. Pats and I sat together for a bit longer and then I was called back through. I kissed Pats goodbye and off I trotted.

I went through and got changed into my gown and slippers and thought I must not have too long to wait as after I’d got to this stage last time I’d gone through relatively quickly. I joined three other ladies who were already waiting. One of them would be called to go through, then another two new ladies would come and sit. This went on all morning and those of us who had been sat waiting the longest were getting really fidgety and tired. It was 10:50 and I was absolutely gasping for a cuppa!

A nurse came and got me and finally we went downstairs…to go and sit in another waiting room! Luckily I had a book with me (The Secret History of a Woman Patient) and had managed to get halfway through it and then at 11:30 I was taken through to the theatre.

I felt positively calm this time knowing exactly what was going to happen. As I lay on the bed the anaesthetist injected with my first glass of ‘champagne’, I felt it go in but it didn’t make me close my eyes. ‘Are you feeling sleepy?’ the nurse asked. No I was wide awake! They put an oxygen mask on me and then came some more ‘champagne’. I wasn’t getting tipsy on this today until she delivered the final shot and off I drifted.

I awoke in the recovery room feeling woozy, but ok. Not in as much pain as I had after the egg collection the previous Friday! The nice nurses kept constant checks on me and after a while I was bought tea and marmite on toast.. my favourite. The nurse must have loved marmite herself as it was slathered on thickly – just how I like it!

Darren came to get me a short while afterwards and I went home and slept right through until the evening.

Surgery results

The appointment to find out the results of the lumpectomy was scheduled for two weeks after the surgery. I’d psyched myself up massively for the appointment, but rather frustratingly on the morning of the day of the appointment, I received a call from the breast care nurse to say there had been a delay with my results. I’d need to go back the following week instead – ahhh more waiting! I know it wasn’t the nurses fault, but there really is nothing worse than waiting for results, as you feel stuck in complete limbo.

When the Thursday of the following week came round, strangely enough I felt completely different to how I had the previous week. I had been reading a book called Get Some Headspace by Andi Puddicombe, and I don’t know if it was as a result of trying to observe my worrying thoughts as opposed to getting caught up in them and getting swept away by them, but I seemed to feel much calmer.

After a long wait we were called in to see the doctor. He carried out a quick inspection of the scar and said I was healing nicely. As we sat down together he then started off by telling us that “the results were mixed.” Ok here we go I thought to myself, thinking back to the last time I’d been sat opposite him when he told me about the ‘incidental findings’ they’d found.

He reiterated the fact that the lymph nodes they’d tested were all clear and how positive that was. He then said that rather than being the predicted 1cm in size, the tumour was actually 2.4cm and a stage 2 cancer. Shit I thought to myself and grabbed Pats’ hand tightly.

He then explained about the clear margins that they look to achieve around each side of the tumour. Basically the surgeon’s goal is to take out all of the breast cancer along with a rim of normal tissue around it. This is to be sure that all of the cancer has been removed. The pathologist then examines this rim of tissue, the surgical margin, to be sure it’s clear of any cancer cells. The doctor said that whilst three of the sides were clear, one didn’t have a clear enough margin so they would need to do a re-excision and take a bit more out.

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He also then went on to say that the cancer I have is HER2 positive. About 20-25% of breast cancers have an increase in the number of copies of a gene called the human epidermal growth factor receptor 2 (HER2), called a HER2-positive cancer. The gene makes a protein that is found on the cancer cell which stimulates them to grow; these types of cancers usually grow more quickly. Because of this I would need to have chemotherapy along with a drug called Herceptin.

HER2

Chemotherapy? Did he really just say that? The word reverberated around my head. Freakily enough, I’d actually had a dream the very night before in which a doctor had told me that I’d need chemo. In my dream I had broken down into tears wailing “What about my hair?” Maybe subconsciously I knew they were going to tell me this, I don’t know, but I wasn’t the same soggy mess I had been when I’d sat in front of him a month ago.

I asked a couple of questions in quite a matter of fact way – I guess it felt like it wasn’t happening to me. All along they’d been positive about it but hadn’t been able to completely rule out chemo. I was due to go in to have my eggs harvested the following day and had been cutting out drinking alcohol but after leaving the hospital I really needed just one glass of wine to try and make this news a little more palatable!

I called my dear Mum and told her the results. She was clearly devastated. ‘My poor poppet’, she said. ‘I’ll be fine Mum,’ I said trying to reassure her. ‘It is what it is, I’ve just got to get on with it..I might need to get myself a nice wig though,’ I said jokingly. After chatting about it all for a bit she finally said ‘Think of the money you’ll save from not getting your hair done,’ putting a humorous slant on it. This made me feel better, I needed to look for positives and to try and laugh about it to take the edge off it all I guess.

I then called my sister and had a similar conversation with her. “Don’t worry, I’ll be ok – it’s just going to take a bit longer than we thought”, I said. Having never been on the receiving end of someone I love telling me such news, I really don’t know how I would respond, but I felt like I needed to hold other people up and make them feel better about it.

I felt surprisingly okay about it all on that day, perhaps it just hadn’t sunk in yet. I just kept telling myself that I’m a strong and positive person and I’ll get through this.

I then spoke to friends when I got home, all of whom asked me various questions that hadn’t even registered when I was with the doctor. I hadn’t followed up by asking him directly what my prognosis was, it simply didn’t occur to me at the time. I hadn’t even asked when the chemo would start.

Nuclear medicine scan

When the letter for this appointment came through the door I must admit I did wonder what the hell it was. I hadn’t remembered the doctor saying I’d need this scan and initially started to worry myself that they’d found something else on the MRI and that’s why I needed this additional scan.

The leaflet enclosed with the appointment said that having a nuclear medicine scan is similar to having an x-ray and that a small amount of radioactive dye is injected into the body which can then be scanned by the camera. The amount of radiation received is similar to having an x-ray and there weren’t any ill effects afterwards but that it recommended not having close or prolonged contact with children or pregnant women.

We arrived at the scan and after a short wait I was called in by a nurse.  She asked me to undress to the waist and lay on the scanner bed with a blanket over me. She then said she needed to inject my breast with a very small needle that contained the radioactive substance. This wasn’t too painful actually and luckily was over very quickly. She positioned the bed so I was close to the scanner (a gamma  camera) and moved it up to close to my body. She then explained that she’d then be checking the monitor that was above me to see which sentinel node the radioactive fluid was travelling to.

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What I could see on the screen was something similar to the above, showing the site where the dye had been injected. The nurse needed to see which lymph node it then travelled to which would determine the nodes to be removed and tested in surgery.

The sentinel lymph node is defined as the first draining lymph node on the direct lymphatic pathway from the primary tumor site in the affected breast. It’s identified by injecting a small amount of radioactive material into the breast, prior to the surgical procedure. The material is carried into the underarm area by the lymphatic vessels and trapped in the sentinel node. The lymph node with the dye only shows where the sentinel lymph node is located, but not if it may or not contain cancer cells or not.

She monitored this for a few minutes and then asked me hold my chest – no change in the fluid.  She then gently put my arm into a different position to see if that would help the movement of the fluid. For some scans the pictures can be taken immediately, but for others it’s possible to have to wait up to three hours before the pictures can be taken. The nurse was about to ask me to sit myself up and get dressed when she said she’d try one more time and luckily the liquid started to travel.

During surgery the sentinel lymph node or nodes are identified, removed and then looked at under a microscope. If there are signs of cancer, the surgeon will then proceed with an axillary node dissection and remove several additional lymph nodes from the underarm area. If the sentinel lymph node is free of cancer cells there would be no need to remove additional lymph nodes.

The nurse said that because I’d had this scan I was likely to be first or second on the operating list in the morning. She kindly gave me directions on how best to get to the theatre admissions ward in the morning as it’s apparently easy to get lost if you go in the wrong entrance of the hospital!

Dr David Hamilton and visualisation

I’d had a bad day at work on the Tuesday, and although everyone had been absolutely lovely and really supportive I felt a little exposed sitting in our open plan office. I’d agreed with HR that it would be okay to communicate to the people I work with what was going on with me as they’d obviously wonder why I wouldn’t be at work. Plus I thought if it raised awareness with those I work with and their friends and families it would at least do some good. It felt like people were staring at – even though they weren’t – they were far too busy getting on with their jobs.

I’d taken myself off to the loo and just happened to walk past a pregnant lady in the corridor and it completely set me off. I spent the next 10 minutes sobbing uncontrollably in the toilet cubicle. Would that ever be me? It was all I had been thinking and dreaming of over recent months, waiting in anticipation and hoping for that little sign to appear in the pregnancy test month after month. I managed to pull myself together and hurried back to my desk to collect my things – I needed to be at home. A colleague followed me out to the car park and I explained what had set me off, and she gave me a big hug.

I’d arranged to have the visualisation session at my yoga teacher’s house that evening and as I pulled up in her driveway I admired the view she had at the front over the beautiful rolling fields. As she opened the door and welcomed me into her home, I commented on how beautiful her house was and what a lovely view she had. She then showed me through to the back of the house where an even more beautiful view could be seen – it looked out over the fields and to the Windmill in the distance. Wow, it was stunning, imagine waking up every day to see that!

She took me through to what she called her “spiritual room” which was also just amazing, adorned with Buddha pictures and ornaments, crystals and beautiful paintings. What a peaceful, serene and idyllic place to live.

I explained to Julie where I was in terms of the biopsy results and the initial prognosis. She was very positive about the fact that nothing had shown up in the lymph nodes. She told me that her sister had been diagnosed with breast cancer at the age of 39 and had five lymph nodes removed, and now at the age of 56 she continues to be absolutely fine.

Julie already knew we’d been trying to start a family as I’d told her this when we started yoga at the beginning of the year (having read that yoga could be good for fertility). She asked if we would continue to try or if any IVF would be involved. When I said we would be doing IVF she sympathised with the fact that I’d be dealing with both things at once and how emotional that would be.

She asked if I was planning to continue working throughout all of this, which I said I was planning to take time out to have the treatment and how lucky I was that work had been so supportive of me. She brought up the few times that I’d texted her in the weeks before to say I couldn’t make it to yoga (due to work commitments) and had detected there was an element of stress going on there. Julie said she thought it was incredibly important to devote this time to myself.

She talked about David Hamilton’s Placebo School and that when people are told something, that their belief system quite often determines the outcome. She gave me an example saying ‘Just take these pills and they’ll make you feel better (and they are the real tablets).’ She then said ‘Or if I was to say okay Allie, I’m giving you these pills, and I had a white coat on and was looking you in the eye, saying these are the pills that you need to really get better.’  Julie said that the way we process that information and the way that we deal with it has an affect on the outcome. It’s a bit of an overused phrase but ‘it’s mind over matter’, she said and how very empowering it is to believe that we can take control over what’s happening in our bodies.

She then gave examples of how it had directly helped her – she’d once had a bad abyss in her mouth which meant she’d probably need a tooth out, and she’d also had a bursitis and the doctor wanted to give her steroids. Both times she went away and focused on visualising those parts of her body getting better and healthy and both times it had worked. ‘Never underestimate the power of your mind, in visualisation and relaxation it’s all about tuning into your body and getting connected with that.’ Not quite curing cancer I thought – but I’m definitely up for giving this a go!

She said we’d go through to her office to watch some videos by David Hamilton on the Placebo School and then we’d devise a strategy together. ‘It’s important that it comes from you, it’s no good me telling you what to visualise’. Julie emphasised that it needed to become part of a routine – apparently some people do it for 40 minutes at the beginning of the day, some people do it for 40 seconds 10 times a day. ‘It’s about having that continuous awareness, but you need to make it a daily habit – a habit then becomes a practice.’ It takes 40 days apparently to change the neural programming of our brains – the brain doesn’t die and get old, it keeps forming neural pathways, so we can continue learn to do new things.

After watching a few of the Placebo School lessons by David Hamilton we discussed what my visualisation would look like. In some of the examples some people had been kind to their cancer, thanking it for coming to their body but that it was time for it to go. I wasn’t in that mind-set at all, I definitely wasn’t thankful for cancer inhabiting my body. I eventually chose to focus on colours, visualising a bright white healing light shining through the crown of my head with the colour of the cancer cells being dark and the bright light blasting these black cells away changing them to healthy pink and green.

Julie then took me through a physical visualisation and relaxation session in her spiritual room – I came round feeling calm and much more relaxed.  We also developed an affirmation (a positive statement set in the now) about my state of health and wellbeing.

I left her house that evening feeling relaxed and empowered that I could use my mind to have a positive effect on my body and my health.

MRI Scan

This was another first for me – other than having my teeth x-rayed at the dentist I’d never had any other scans before in my life. Upon arriving at the scanning unit I changed into a rather fetching hospital gown – luckily I was able to bring my own dressing gown to cover my modesty! I left Pats in the waiting area and the nurse showed me through to the scanning room.

As I entered I saw the large tunnel machine with a bed attached to it – just as you see in pictures and on TV. Unlike the poor lady who was before me, luckily I wasn’t claustrophobic so I wasn’t worried about actually being inside the tunnel. The appointment letter had said I could bring along a CD to listen to whilst I was being scanned so I handed over my Amy Winehouse Lioness: Hidden Treasures album.

The nurse fitted a cannula to my arm which she explained would be used to inject a dye into me whilst I was inside the scanner. I laid face down on the bed that had two plastic holes for the chest area that I had to position myself in.  She explained that there would be two scans, one of which I would hear a noise to indicate that the dye injection was being triggered. She placed a buzzer in my left hand and said if I had any problems at all whilst I was in there I just needed to press the button and they would bring me out straight away. She did say they wouldn’t be able to inject the dye into me again on the same day so if I did have to come out I’d need to go back for another appointment.

She said I would hear some noises whilst inside the scanner and gave me a pair of headphones explaining that I’d be able to hear my CD through them and that I would also be able to hear her too. After they put the earphones on me and left the room I shut my eyes tightly. My eyes started to well up slightly as I was left all alone.  Boy did this feel weird!

I began to feel the bed moving in what must have been a backward motion and the first track on the album started playing ‘Our day will come’. I immediately thought of Pats, thinking to myself that after all this is through our day would truly come. My mind wandered off into thoughts of our wedding day – the beautiful Italian setting, the gorgeous weather, our friends and family and that feeling of complete and utter peace and happiness. It’s always the place I go to when I have to take my mind off what’s going on- usually it’s whilst having my teeth drilled at the dentist and saying to myself ‘think happy thoughts, think happy thoughts!’

I continued to feel the movement of the bed swaying and various clicking noises were going on around me. Having the scan wasn’t painful in any way it was just the whole experience of being there, it made everything more real and to be completely honest I felt frightened.  It was soon over and I got dressed and joined Pats again outside. All done…now we just had to wait for the results.

Someone like me

Before we went to meet the consultant on our first trip to the Nuffield, Caroline urged me that it would be crucial to harvest my eggs before my surgery to ensure the best possible chance of saving them. This put me into a huge quandary as the consultant we had seen previously said that my surgery was the most important thing and that the egg harvesting would happen post-op. Pats re-iterated to me what the consultant had said in that having the surgery was paramount – he was adamant that there would be no point in having any of my eggs to preserve if that meant adding risk for me.

Having not spoken to my breast surgeon at all as yet, I then went into a frenzy of trying to speak to someone at the hospital to find out what I should do. I’d left two voicemail messages with his secretary but hadn’t heard anything. The breast care nurses I had been in contact had all been fantastic, however they weren’t able to actually advise me what to do. I felt like I was having to liaise with people separately about what was best for me and wasn’t able to quickly get the answers I needed.  My period was due in the next day or two and I felt like I could be missing the only window of opportunity. This was all so stressful, it was such an important decision to make and to be made so urgently but I couldn’t decide by myself.. what on earth did I know about breast surgery and fertility treatment?!

I looked on forums, websites and did all sort of searches to try and find out more information. I had received literature from the Breast Cancer Care charity which included details of a helpline to call. I had a chat with a really lovely lady who had asked a specialist there for me and they had said there was no clinical reason to have my eggs collected before my op and that surgery and radiotherapy wouldn’t affect my eggs. I also talked over a few other concerns I had with her which was extremely helpful and put my mind at rest.  She recommended the ‘Someone Like Me‘ service where they try to connect you with someone who has had a similar diagnosis and treatment to you.

After my initial phone call to the Someone Like Me number, they put me in touch with a lady called Eileen who very kindly called me for a chat. She had been diagnosed with hormone receptive breast cancer when she was 36, some 10 years ago. She had a lumpectomy, followed by a course of radiotherapy and had also taken tamoxifen. I asked her questions about her surgery and what radiotherapy was like. After surgery she had felt numb and she still feels slightly numbness now and she was less mobile in the affected arm after surgery. Eileen said she felt tired having her radiotherapy and that her skin became itchy/flaky and irritated (a bit like sunburn) and that she regularly put E45/Aqueous cream on to moisturise the area. Whilst taking Tamoxifen she experienced more tiredness, night sweats, hot flushes and she felt bloated – the tablets mimic menopausal symptoms.

I explained my situation around trying to conceive and she said that no one had talked to her about being able to harvest or freeze her embryos back then but that she’d successfully gone on to have a little girl at the age of 41. I felt encouraged by speaking to someone who had been through a similar experience and who had successfully gone on to have a child after her treatment too.

I then finally managed to speak to my breast care nurse, who having spoken to the doctor, recommended not doing anything regarding egg harvesting this side of the surgery – getting the cancer out was the priority and then I could have the fertility treatment afterwards. They said they couldn’t be 100% sure, but that I may not need chemotherapy and that the Tamoxifen tablets would not make me infertile. I felt great relief from this and that someone who knew the history of my diagnosis and treatment was giving me an answer – one which I think deep down inside I knew anyway.

Claire had said that as it seemed I had so many outstanding questions that she’d book me an appointment to meet the doctor on the Monday so we could discuss them together. She also said they recommended I have an MRI scan as due to my age and breast density they couldn’t see clearly see from the mammogram I’d had and that in the unlikely event that the lump was bigger the MRI would be able to give better detail.

Call 0845 077 1893 or email someonelikeme@breastcancercare.org.uk to access the Someone Like Me service.

Finding a fertility clinic …tick tock tick tock

In the short space of leaving the hospital and driving home, we’d both come to the agreement that we would go ahead with the fertility treatment. Finding the money worried us, but we’d spent money on far less important things in the past – I’m sure we could find the money.

Something was troubling me about the letter that the consultant’s secretary had handed us. It looked like the Gynaecologist was affiliated with the Complete Fertility clinic in Southampton. Some close friends of ours had previously received IVF treatment at this clinic and, very sadly, were unsuccessful in their attempts. Amongst this tragedy my friend had told me at the time (and also very recently) what an awful after care experience they’d received there and said that she wouldn’t recommend the clinic at all – this kept playing on my mind. Whilst he seemed like a nice enough chap and very knowledgeable specialist, I felt I didn’t want to put myself in the hands of people who may not treat me in the manner in which I’d expect, especially with everything else going on and also having to pay thousands of the pounds for such care too. I voiced my concerns to Pats and we both agreed that given that we were paying for the treatment ourselves it would be best to find an alternative clinic.

When we got home we called my Mum and Dad to let them know what they’d said at the hospital and to asked if they’d be able to lend us the money for the treatment. They seemed as pleased as we were that there was some hope for a baby at some point in the future and very kindly agreed to lend us the money. That was a huge relief and now knowing that we were going to go ahead with the treatment and with the backing of my parents to help us fund it, all I now had to find a suitable fertility clinic.

Whilst we had experienced difficulties falling pregnant naturally, we hadn’t got to the point of looking into IVF options so I had no experience or knowledge of where to start the search.  I found the Human Fertilisation & Embryology Authority  (HFEA) website – the regulating body that licenses and regulates UK fertility clinics. I put in a search with our postcode and up came a list of clinics. The HFEA website was very good and detailed and had data for a whole host of options but I felt overwhelmed by all the information. I looked at the success rates and thought I’d start a spreadsheet to list them all to determine which would be the best option.

A friend of mine had not so long ago successfully given birth to a beautiful baby girl via IVF treatment and had called up that day to see how I was doing. She works in the pharmaceutical industry and offered to use her contacts to gain some advice for me. I said I didn’t have a clue of how to choose the most suitable clinic and she recommended  asking for success rates for frozen cycles and said that the clinic in Surrey that they had used was very good and she also very kindly offered to help do some research for me. It was good to speak to someone who had been through the same experience and I was grateful for the help.

Not wanting to rely on my friend’s ability to research an option for me, I then started to look at forums to try and find out people’s experiences of clinics –  after all that was the reason why we weren’t going with Complete. I started to feel so stressed with it all, not knowing what to do for the best and knowing we had to make a decision within the next day or two it just all got on top of me. It wasn’t like choosing an energy provider or a plumber, this was such an important choice to make.

Another friend of mine had already had a few rounds of IVF in the UK but unfortunately had been unsuccessful each time, she felt despondent at the treatment she’d received here and was about to embark on a trip to Athens to a clinic called Serum IVF. She’d told me how brilliant they had been with her and that their success rates were really high. The lady, called Penny, there seemed to be quite well known, as when I mentioned this to my dear friend, Kate, previously that week she seemed to know all about her from seeing her on TV. I felt compelled to get in contact with the clinic and after reading all the amazing testimonials on their facebook page I felt like it could be a good opportunity for us. I’d mentioned it to Pats that evening but he laughed and said ‘You are joking aren’t you? You’re not going to be travelling to Athens after you’ve just had surgery Allie!’ It did seem like a crazy idea but one that looked like had been so successful for many others.

The following morning I’d already completed the initial enquiry form for the Serum IVF clinic and they came back to me instantly. I told Pats that they’d replied and that’s when he flipped slightly. He said it was ridiculous for me to be thinking about travelling to Athens after I’d had surgery and to a country that is in such a dire state economically. I felt so upset I burst into tears in the bathroom – I knew deep down inside that he was right but it somehow felt like a better option. He came to kiss me goodbye as he set off for work and saw I was crying. I felt so mean as I know he was just looking out for what was best for me, and he could see I was clinging onto the best chance of us having a baby. He hugged me so tight and the tears eventually stopped – this was all starting to take its toll emotionally on us.

I’d called work that morning in quite a distressed state and said I wasn’t going to be at work – they’d been so supportive of me ever since my diagnosis – they said to take the time so that I could do my research and figure out our options.

Amongst the clinics I rang, I decided to call the Nuffield in Surrey as that’s where our friends had been as well as another friend. I spoke to someone there called Caroline and asked whether it would be possible to transport embryos from there to Athens. She questioned why I wanted to do that and I explained the whole situation to her. She said it would be very costly to transport and that I’d need to arrange the transfer myself via an international courier and the process would be quite complex. She told me that the best place for me was here in the UK, that their clinic had just been audited by the HFEA who were thoroughly impressed by all their working practices and had received an outstanding assessment. She went on to explain similar information that the consultant at QA had and said that acting quickly really was crucial in all of this. Caroline had such a way about her that she made me feel completely at ease and that I could totally entrust our treatment with them.

In the meantime my friend had come back to me and said her contact had recommended the Royal Marsden Hospital in London (I did not know this at the time but this is a leading cancer hospital). I wanted to consider this an option, however the time it would take to drive there and back made it an unsuitable choice for us. After speaking with Pats about the pros and cons of each, we agreed that we would use the Nuffield for our treatment. Caroline went on to book us an appointment with the consultant that Friday. Apparently there is normally is a 6-8 week waiting list, but because of my circumstances we were able to jump the queue – the one and only benefit of having cancer!

She sent me a list of all the tests we’d need to have in place before the appointment.  I then spent the next day or so running from our new doctor’s surgery to have tests and to my old surgery collecting copies of previous smear tests, and Pats and I both had our bloods taken at a separate local hospital .

At last, I could see a way ahead and felt confident we’d chosen a good clinic with people who would take good care of us.

A glimmer of hope

The very next day we were back at the hospital again, this time to meet with the fertility specialist that Claire had arranged. I felt really nervous going back to the hospital that day. What were they going to say to us? Would they burst the bubble on the dream of our little family? Pats and I sat in the waiting room together clutching each other’s hand.

We were greeted by a chap who was a Consultant Gynaecologist. He started off asking us lots of questions about our history, health and my cancer diagnosis and treatment plan. After this he went on to explain that there was a possibility of trying to preserve some embryos before I undergo treatment.

He said if I wasn’t undergoing chemotherapy then my ovaries wouldn’t be affected in a major way by the anti-oestrogen tablets but it would obviously delay matters if I wanted to get pregnant.  ‘And at the age of 39, time is much more of the essence than if you were 32/33 because whilst you’re on the anti-oestrogens you can’t get pregnant – so there will be a delay of a number of years. If you were to get the all clear in 2-3 years’ time you’ll be 41/42 and your chances of getting pregnant then are less than they are now.’ He went on to say that most ladies they see  are having chemotherapy which destroys some of the eggs meaning their chances of getting pregnant are much less than those having the treatment that was planned for me.

‘So it is possible that you’re able to conceive after the treatment, but there will be an effective delay.’ His words brought a sense of relief and I was now starting to feel much better and more confident that there was still a chance for us further down the line – albeit when we are a bit older!

He said if we wanted to go ahead and preserve and store the embryos that would mean the chances of getting pregnant would be from the age of a 39-year old as opposed to someone aged 41-42.  I would need to undergo an IVF cycle which he said was complicated and expensive, because in my circumstances it was unlikely that funding would be available. He said the costs were substantial and would be approximately £4,000 for an attempt at IVF and storing embryos. He stressed that if we wanted to go down that road it would need to be done as soon as possible and that they would try to fit it in between surgery and the medical treatment and that I would need to liaise with my oncologist as it will mean the tamoxifen treatment will be delayed by a number of weeks.

He said the first decision we would need to make is whether we wanted to go down that road and also whether we were prepared to pay for it. I asked him if the funding wasn’t available because of our age or where we lived and he said that IVF funding on the NHS is very limited and is available for some couples, but that we’d need to tick a number of boxes and that unfortunately one of the boxes is that I should not be older than 34. I had heard there was an age limit from friends who had tried for NHS funding but thought that 34 seemed a really low age to cap it and that the tick box criteria seemed a little unfair given our circumstances. He explained that they try to obtain individual funding for special cases but that those are for women having chemotherapy because they have less of a chance of conceiving afterwards.

If we wanted to go down that road, he said they would need to make quite a few arrangements to fit it all in. The treatment wouldn’t be available in Portsmouth, with the nearest clinic being at the unit in the Princess Anne hospital in Southampton. We would both need blood tests for screening, I would need an ultrasound scan plus there would be a lot of paperwork to be completed.  I asked whether that was an NHS unit in Southampton and he said it was but that they also see people who are paying for treatment themselves. He said it wasn’t essential that we go there, if we were paying for the treatment we could go anywhere we wanted.

They would start the treatment on the first day of the period I have following the surgery. I asked if there was any risk of taking the fertility medication. He said that the drugs used will stimulate the ovaries to produce a good amount of eggs meaning they’ll be working on overtime and therefore the oestrogen levels in my blood will be pretty high. With breast cancer there is always a concern that the high oestrogen levels may have a detrimental effect on the cancer itself. He said it wasn’t proven, but it certainly was there and to try and counteract this they would give me an additional drug that they don’t normally use to try to keep oestrogen to a lower level. He said the risk is more theoretical than real but the theoretical risk is certainly there

Pats asked how long we had to decide, what with not being eligible for funding, we’d need to organise how we pay for it if we were to go down this route. He said we’d need to decide before the surgery, and preferably sooner, because we would need the blood tests done and to have results and paperwork in place.

I asked if whether being pregnant in the future would have an effect on whether the cancer would come back. He said I would need to speak to my oncologist about that but in general the risk would be small. ‘They wouldn’t advise you to get pregnant unless they’re happy anyway – they’re not going to tell you to get pregnant 6 months after surgery – it’s going to be a number of years.’ Pats commented that I’d need to take the anti hormone tablets for five years, to which he said that it may not necessarily be as long as that ‘Medicine is not black and white, it depends on individual circumstances and they may be willing to reduce that time period.’  Well that was another positive, perhaps I wouldn’t be as old or have to wait as long as we initially thought.

He went on to say that as part of the treatment I’d need to go onto drugs that would take control of my ovaries allowing them to create more than one egg. During the treatment I would undergo regular scans – 2-3 times a week. The treatment would take 2-3 weeks and involve a small operation to take the eggs out of the ovaries and that on the day Pats’s ‘services would be required’. They would inseminate the eggs with his sample in the lab on the same day. The next day they would know how many have fertilised and they would let them grow into embryos for approx five days and then freeze them. Only embryos of good quality would be frozen – average quality embryos wouldn’t survive the freezing and thawing process. The embryos could then be stored for up to ten years.

Pats asked about what happens when the time comes to put the embryo back in. He said that this would be a much simpler process, where they would give me some drugs – but nowhere near the same amount – and it would then just be a matter of preparing the lining of the womb and then putting them back. He said the chances of it working putting one embryo back with a good quality egg is on average one in three (about 35%). In my case it would be less because of my age, and for a 39-year old it would be around 25% per embryo put back. But he said we may have more than one egg to put back and that each one put back will have the same chance each time (assuming the embryos survive freezing). The charge each time to put an embryo back would be approx £1,000.

He then gave us some more detailed information to take away and think about. He reiterated that there would be financial implications for us and that we’d be expected to pay the cost when we start the treatment itself. He said he only works at the hospital on Tuesday’s and Thursday’s so would try and fit us in the following week and recommended we went in on that Friday to get the blood tests underway.

As we both left the hospital I could tell Pats was still thinking about whether we should do it or not – and at £5,000 it’s certainly not a cheap option. But to me it was our only option and this was the only window in which we could ever do it as there would be no other options further down the line given how old I’d be.

Someone had offered us a chance and to me it was one we should grab with both hands.  The 25% success rate is not amazing but hey, it’s 25 times better than 0.