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.

Shock number two…

As we left the office a breast care nurse, Claire, came and took us into a separate room.  ‘A bit of a shock, not expecting anything like this today, or…?’ she trailed off asking inquisitively. ‘My husband is a really positive person and he refused to believe it would be anything other than a cyst, whereas I certainly had hope but preferred to be prepared for either outcome,’ I replied.

Claire went on to explain a bit more about the cancer, that it was low grade which meant it was very slow, not a quick or aggressive growing tumour and that their plan was to go on and cure and treat this. She said it was obviously very frightening and that I’d clearly want treatment to start as soon as possible but that due to the nature of my tumour, it wasn’t going to change at all in a period of weeks.

Claire said that breast cancers these days are much more treatable and that success rates are very good and for grade one tumours in particular, however it would all depend on the size and grade after surgery and whether the lymph nodes were infected.

Pats asked Claire what lymph nodes were and she explained that they are part of the lymphatic system.  A filter system that gets rid of waste products – debris, infection…and cancer cells.  She said that if anything was in the breast that the lymph nodes might try to get rid of the cancer cells and that it often spreads to the glands under the arm. She pointed out that my glands seemed to be all normal and so were optimistic that it was confined to the breast.

Claire then went on to say that radiotherapy would be likely afterwards.  This is an x-ray treatment that sterilises the rest of the breast. She said I may not need chemotherapy as its a grade one and that the benefit to me would be very minimal, but that they would need more information. I asked again about what effect this would have on my fertility.

As most of our friends and family know, Pats and I had been trying for some time to get pregnant with a little Moonmin but sadly to no avail. I’d already rang a fertility clinic the week before to ask about what options might be available and the lady I spoke to said they would be able to harvest my eggs. Claire also said that this could be done, but that it would very much depend on timing. ‘Often by the time they can harvest eggs we would need to have you in for your treatment but that’s certainly something that we can look into.’

The  cancer I have is hormone receptive (it feeds off of oestrogen) so I would need to take anti hormone drugs. Claire said  that there is a possibility that the medication could potentially switch off the ovaries which would affect my fertility. I’d have to take the tablets for up to five years with a recommendation of being off them for two years before getting pregnant. ‘It’s like a double whammy isn’t it?’ said Claire. I began to cry again.

All our hopes and plans had been on starting our own little family for such a long time, to hear that those dreams could now be taken away from us was just absolutely heartbreaking. It sounds strange but it kind of hurt more than hearing about the cancer diagnosis.

Pats and I had certainly taken our time in deciding when we wanted to have children.  We’d spent many fun-filled years enjoying ourselves, having a great social life, travelling the world together and not marrying until eight years after we’d met. Starting a family was something we’d always said we wanted to do but had left it to a much later stage in our lives than most couples.

I was already rather neurotic about the desire to get pregnant. I constantly read books, websites and blogs on the best tips to maximise success.  I was having regular acupuncture treatment and had spent god knows how much money on ovulation kits, tests, potions and vitamin supplements – you name it, I had it! Poor Pats had felt the pressure from my yearning, especially since moving into our new home which we’d especially chosen as it was perfect for a family. We’d already started investigations into why things hadn’t been working for us…in a way it was a blessing that I wasn’t already pregnant at this stage.

Claire went on to say they had a fertility specialist at the hospital and that she would make an appointment for us so we knew what our options were. She said there were possibilities that we might potentially be able to wait a month or two whilst my eggs were harvested before starting the treatment. She said if my cancer was a higher grade or lots of the lymph nodes were affected we’d be in a different situation, but said that we may have time and might be able to wait one to two months before starting the anti hormone drugs.

Claire said she’s known ladies who have successfully got pregnant after  breast cancer treatment, which raised a smile and some hope within me. However she said they may not want to me to have IVF as that would involve giving me hormones and they would need to be mindful of the breast cancer risk. ‘We’d need to take age into consideration as you would be on the tablets for at least five years, but it may be that you’d be able to take them for two and then…well, that would need to be a consultant decision. We want to give the best treatment for you, what’s safe for you, against the risk of breast cancer returning.’

Claire then went on to book  in my pre-op assessment for 11 May and gave me some blood test forms saying I could have the bloods done that day or if I’d had enough I could get them done when I go back for the mammogram on Monday.

As she left us in the room alone together, Pats gave me a massive hug and said how positive it was and what a good job that I’d caught it early. He said you just don’t ever think it’s going to be that. “It can do one anyway,” I replied, my fighting instincts kicking in. ‘That’s the attitude,’ said Pats. ‘Will you still love me with a deformed breast?’ I asked Pats. ‘I’d still love you with no breasts,’ he lovingly replied.

First trip to the breast screening clinic

Shortly after my visit to the doctor’s surgery, my appointment to the breast screening clinic arrived and was scheduled for two weeks’ time.

Pats has always been around if I’ve ever needed him to take me to any appointments or to give me lifts anywhere.  Like the time he had to take me to the emergency dentist when I was in severe pain with a tooth abscess just days before flying out to Italy for our wedding. (Which incidentally “on a scale of one to ten” of painfulness was about 9!). Or the countless times he drove me back and forth to Haywards Heath to visit my sister in hospital and not to mention all the times he’d dropped me off or picked me up from various social gatherings or events.

But this was one time (when we were at band camp!) that Pats wasn’t able to take me. Well in theory he could have, but he was working in Plymouth the day before so would have meant him doing an eight-hour round trip.  He kindly offered to take me, but such a long journey would have been a ridiculously crazy thing to do. Besides, it was highly probable that the lump was just a cyst.

Despite this hopefulness I still felt somewhat scared to go to the clinic by myself.  I decided I wouldn’t tell my parents anything about this at this stage. My Dad had very poorly back in 2013 having to have his gallbladder removed followed by pneumonia and a lengthy stay in hospital which gave us all a bit of a fright.  Literally two months later my poor sister was admitted to intensive care after sustaining a major head injury after a bad fall.  There was absolutely no point in worrying them unnecessarily, they’d had far too much of that.

My lovely friend Louisa (aka ‘Lou Lou’) very kindly offered to take some time off work so she could come along with me on the day. After having some lunch we arrived at the clinic in the hospital and took a seat in the waiting room together.  Lou chatted away and was making me laugh which helped to take away the anxiety.  Having told her about my awkward experience with my male doctor, she also commented on how all the nurses there were women which gave me a sense of relief.  Having waited for a few minutes, an older gentleman then appeared around the corner of one of the curtains with a clipboard and I instantly knew what he was going to say.

‘Allison Moon?’ he called out.  ‘B*llocks’, I muttered under my breath, I just knew he’d call my name! Just to set the scene here, I’d had a couple of days off work prior to the appointment which had been nice and warm and sunny.  Following a particularly stressful week working on a bid, I’d taken the opportunity to chill out in the garden and do some reading.  In the process however I’d managed to get some very dodgy strap marks.  You can imagine my embarrassment as I had to remove my top and reveal the unsightly marks on my chest. ‘Been sat in the sun have you?’ ‘Ummm, yes…’ I replied meekly. What on earth was I thinking?  I clearly hadn’t thought that one through!

Laying there exposing my white boobs on the bed I felt completely vulnerable.  The gentleman began to move the ultrasound scan around the area of the lump.  I could see the screen he was looking at just out of the corner of my eye and I strained to be able to see what he was seeing.  He then moved the scan towards the outer edge and up to my armpit area.  That’s when the first real worry crept into my head.

After the scan he told me the lump was solid and so I would therefore need to have a biopsy so they could investigate further.  That’s when the tears started rolling.  I lay there weeping and feeling completely helpless, but the two people by my side showed me no empathy at all.  Perhaps they were having an off day? Who works in this profession without being able to give a little TLC? I thought to myself. More to the point what sort of a man feels women’s boobs all day long for a job too?!

I then laid at the opposite end of the bed and they found the lump by ultrasound again and gave me a local anaesthetic to numb the area.  They demonstrated what the noise would sound like when the needle goes in so I was prepared for it (it was a spring-loaded contraption so made a clicking sound).  It went in once and then again to take another sample. It wasn’t as painful as I had imagined.

The female nurse started chatting to me at this point, asking me what I do for a job and saying that I would need to take it easy. ‘I’ve got a proposal to get out tomorrow’ I said defiantly. ‘You just make sure you look after you,’ she said.

I then joined Lou outside and we went and sat in a different waiting room.  I explained what they had done and we tried to decipher which option I’d had from the leaflet I’d originally received in the post. After about 15 minutes I realised I’d been clutching a leaflet in my clammy hands that they’d already given me. It said “Core Biopsy” and was the final screening option listed in the previous leaflet.

That was the start of my (what is usually a pretty much together) head going slightly AWOL (these moments were set to continue).