Witnessing Sarah in intensive care over the preceding few weeks had been a real eye opener for us all. If nothing else it really hit home how throughout treatment there is such a fine line between life and death; From waiting on scan results which would decide whether chemo continues, to managing the toxicity of the chemo itself which could cause organ failure, to surviving (let alone thriving after) surgery. It all seemed relentless.

That said, Sarah was now post surgery, out of ITU and thankfully through the most serious of situations we could have comprehended in the aftermath of the operation. Consequently, our attention shifted to trying to understand what the surgery involved and what the long term implications were likely to be.

This was before we even considered the pathology results, which would tell us whether the surgeons were able to remove the entire tumour with good/clear margins* and how effective the last 6 months of chemo had been**.

 

* A “Clear margin” is a term used when no cancer cells are seen at the outer edge of the tissue that was removed (the tumor along with the rim of surrounding tissue).This was significant because in the short term if we didn’t have clear margins, Sarah would possibly have needed further surgery – although this option would have been limited because there wasn’t a lot of space to play with between the tumour and her spinal cord. Longer term, if it wasn’t possible to get clear margins the chance of relapse / local recurrence would have been greater.

**This was significant because whilst the scans during chemo could predict how well Sarah had responded, the only way we could quantify this and know for sure, was by testing the tumour that had been removed.

 

Now in DoG ward we were getting used to a slightly less clinical feeling ward setting. However, it was clear there was an extremely long way to go in Sarah’s recovery (at this point I wouldn’t even have used the words rehab); Sarah could barely move in bed, and she was not allowed to lie-down on her back or her right side due to the surgical wound*.

*The surgical wound was “T” shape and ran down her spine from approximately her bra strap to the base of her spine near her coccyx. It was through this wound that the large part of her pelvis affected by the tumour was removed.

 

Sarah and I spent our first wedding anniversary (just a month or so after her surgery) in DoG ward. Clearly this was not how we had planned to celebrate our first anniversary, but we spent the day with each other and we vowed to do something special once she was finally home, whenever that would be. It was unbelievable how much things had changed in just 12 months. It may sound crazy, but we always felt so grateful that we were able to celebrate our wedding before Sarah’s diagnosis, and at that point trouble free. It could have easily been so different.

 

 

Outside of hospital I was into the final few weeks of marathon training, cramming runs in where possible outside of visiting hours and around work. The day of the London Marathon came round and although it was insignificant in the context of everything else, I felt a huge sense of responsibility running for Sarcoma UK and doing my bit to try and give this type of cancer some much needed airtime.

During the course of Sarah’s inpatient stay we had come across so many other people affected by this dreadful type of cancer, which made me even more determined. One particular case stood out: a young woman of 18 arrived at hospital transferred from another hospital after being rushed to A&E with a broken leg. They discovered it had broken due to sarcoma weakening the bone, but further investigations were needed to determine where the primary cancer was and whether it had spread. In the space of about 2 weeks this poor young woman’s life had been turned completely upside down; from being unaware of any problem, to shattering her leg and needing traction, to being transferred to RNOH Stanmore and then onto UCLH to start chemo.

 

On what is an emotional occasion anyway, there was an extra sense of sadness on the day of the 2016 London Marathon because Sarah could not be part of the day in the way that she had wanted. At the point of surgery we had expected Sarah to be able to come and watch, and we had secured grandstand tickets so she would have space to herself. It wasn’t to be; instead Sarah watched the marathon with her twin sister on TV in DoG Ward. After the marathon I went to see Sarah, albeit for only 20 minutes until I was kicked out!

 

 

Meanwhile, Sarah was at the beginning of her own marathon – rehab. Progress was slow, and that wasn’t for the want of trying; in fact I have never seen anyone so determined. What really struck me was just how immobile Sarah was, not only in the leg affected by surgery, but also her “stronger” leg. The family found it deeply troubling, but didn’t want to add to Sarah’s trepidation.

 

“I can’t believe how much hard work physio is but I’m giving it my all. I’m just so concerned about the lack of movement in my left leg and whether I’m ever going to be able to walk again.”

 

Not ever being able to walk again was a real concern for all of us, not least Sarah. I knew if it came to that we would find a way to manage, but the psychological torment would have been extremely damaging for Sarah; we already felt a huge sense of injustice at the whole situation. It was clear that Sarah would be in hospital for the long haul, which was something we (perhaps naïvely) hadn’t anticipated.

 

Now two months into her hospital stay and Sarah hadn’t actually been outside since surgery, and worse still she had been largely confined to her bed. On one particularly glorious afternoon during the May bank holiday Sarah was allowed outside. It must have given her such an amazing sense of (relative) freedom being outside of the confines of the ward, albeit for only half an hour or so.

“So May Day bank holiday this week. I used to love bank holidays but frustrated by this one as I just want to get cracking with my standing and 3 days of bed exercises is not sufficient but at least I’m rested for the all important Tuesday.”

 

It may sound strange having just enjoyed a splendid Easter bank holiday only a few days ago (at the time of writing this blog), but we actually came to loathe bank holiday weekends. What this meant for Sarah as an inpatient was different to those fortunate to have a couple of extra days off work.

A bank holiday weekend meant Sarah would typically receive fewer physio sessions, fewer ward rounds from the Doctors, and she would be less familiar with the nursing staff and health care assistants on shift, which at times could be extremely unsettling.

“Early physio session on the Tuesday and I manage to stand on first attempt and on second attempt I leap up and stand for around 3 mins but feels like eternity.”

 

Sarah continued to push herself in physio, something that she obviously knew the importance of, and she constantly set herself goals. Whenever family or friends visited she would ask for help stretching and massaging her legs as these were things that she couldn’t do by herself.

“I can remember becoming quite low in mood in the second month of not being able to move thinking, ‘unless you let me sit I can’t get out of this place’; so that was hard.

But I got through it by having these little goals. And then people would say that they saw me practicing exercises with my husband and felt it looked as though my leg was moving better now.”

 

Sarah built a great rapport with her main two physio’s; to anyone who knew Sarah this would not come as a surprise. They knew Sarah’s background (being a fellow physio) and therefore the three of them took a collaborative approach to her rehab, where they were keen to gain Sarah’s input where appropriate.

It must have been a really interesting situation for the physio’s because Sarah spoke their language and there surely won’t be many points in their respective careers that they get such detailed feedback from the patient.

Although Sarah was making excellent progress in her physio sessions they were taking a lot out of her and she was still reliant on the hospital staff and family to help her dress etc. Sarah remained focused on her goal of getting out of hospital though, and she felt frustrated that there were no real timescales as she was starting to feel institutionalised.

 

“ I said to myself ‘I have to be able to go the bathroom and brush my teeth in the evening’. No one was telling me this, I had just decided it in my own head and they were thinking, what are you doing? And I told them that I was really scared about suddenly being told to get up and walk and do all this, and I’m worried that I won’t be able to manage at home.”

 

Sarah’s clinical nurse specialist at RNOH Stanmore was an absolutely lovely lady and someone who had listened to our worries and concerns from day 1 at diagnosis. Sarah trusted her immensely and aired her thoughts about going home and wanting a plan. The CNS then called a meeting in the day room with tissue viability (who look after the wound), the physios, occupational health, the ward manager and Sarah with the aim of formulating an exit plan. With a date tentatively set, the end of Sarah’s stay was finally in sight.

 

“In that last week in hospital I probably cried every day because of the pain of getting to the toilet, it was exhausting, because I hadn’t done anything by myself. On the day I went home the nurses were still dressing me.”

 

On 10^th June Sarah was finally discharged from hospital, some 81 days after arriving at RNOH Stanmore. It was of course a huge relief to us all finally getting out of Stanmore, but it was also met with apprehension as Sarah was still hugely dependent. She still wasn’t allowed to sit down because of the surgical wound, she was unable to wash and dress herself and had not actually visited the house since we moved in (more on the last point in the next blog post!).

 

To support my fundraising and contribute to Sarah’s #FortisInArduis fund please visit this link – https://www.justgiving.com/fundraising/londonmarathonforsarah

This blog post has taken me ages to put together – partly because it has been hard to be concise and trim the detail to a reasonable length post and partly because it’s meant delving into details which to be frank I dealt with at the time and shut the door on. The next posts will be a lot more regular! Promise!

 

By late January / early February 2016 the chemo was starting to hit Sarah hard and almost every cycle was delayed. The benefit of the last few doses of chemo was weighed up against the benefit of having extra time to recover (from the cumulative toxicity) before surgery. Due to the positive scan results and magnitude of the upcoming surgery, the decision was made to stop chemo early. It seemed to have done its job, and actually it was kind of a relief to stop.

 

Prior to the surgery date we had been to RNOH Stanmore to discuss plans with the surgical team. During one visit, and at Sarah’s request, we were invited to look around the ward Sarah would eventually stay on post-op, as she wanted to get an idea what it was like. Sarah’s Clinical Nurse Specialist set up a meeting with the Ward Manager to show us around.

The Ward was in an antiquated block split into male/female sides with space for around 10-12 beds in each. The Ward Manager was very welcoming and gave us all such reassurance that Sarah would be looked after.

 

 

Soon surgery week was here – it had been a long time coming. We arrived at hospital mid afternoon and “checked in” – the idea was that Sarah would stay the night before surgery and could therefore be called to theatre as soon as they were ready the following morning.

Upon checking in, Sarah received a pack containing details about the ward, visiting hours, and various other bits of information. The pack also contained a red pin badge with the words “I delivered great care” across it. The idea being patients (should they wish) could give the badge to a member of staff who they felt had delivered great care to them during their stay. What a great initiative!

We made our way to the Duke of Gloucester (DoG) Ward and set Sarah up for the evening (unpacking toiletries, putting clothes in the pedestal, ensuring her phone/phone charger was in reach etc). As soon became customary (although never taken for granted) the Ward Manager came over and spent some time listening to our concerns. There were lots of things she couldn’t promise or directly influence, but she set about taking care of everything else within her control and any of Sarah’s requests. One such request Sarah had, having lost her hair from chemo (and understandably feeling very image conscious), was that she wanted her head to be covered when she woke up after surgery.

 

The following morning came round quickly. I was surprised just how relaxed Sarah was and I buried my own trepidations in the hope this relaxed state would continue. We played Monopoly on the iPad to pass time and during the morning we received lots of visits from various members of staff who wanted to introduce themselves, including the surgeon (who we already knew) and the anaesthetist. This personally gave me a lot of reassurance that Sarah was going to be looked after. I wasn’t sure how far I would be allowed to go with Sarah when she left the ward, but I obviously wanted to be by her side for as long as possible.

Soon the porters arrived to take Sarah down to theatre, and I went with her, accompanied by the Ward Manager. We went into a very clinical looking side room and we were greeted once more by the anaesthetist, who explained exactly what she was going to do. Once the anaesthetist started going about her checks and giving Sarah the anaesthetic, the Ward Manager tactfully suggested that now would be a good time to leave. I was apprehensive, but calmly said goodbye to Sarah, and promised I’d be back as soon as she was out.

As we left the Ward Manager explained that “watching her go under” wouldn’t be nice – I appreciated her thoughtfulness and to be honest there was never going to be an easy time to leave.

I met Kathryn (Sarah’s twin) later that morning and we waited (and waited and waited) in the hospital café. By this point we were both keen to see Sarah and as time passed we became more edgy because we were now hours beyond the time we expected her out of theatre. Had something gone wrong? After numerous calls to ITU we decided to head round just in case – more to alleviate the nervous tension, boredom and helplessness of just waiting.

 

Intubation: the process of inserting a tube, called an endotracheal tube (ET), through the mouth and then into the airway. This is done so that a patient can be placed on a ventilator to assist with breathing during anesthesia, sedation, or severe illness.

 

Upon arriving at the long steep corridor we saw Sarah, still intubated, being wheeled down the corridor unconscious. Whilst this could understandably be a shocking sight for relatives and a sight staff were keen to protect us from (hence why we hadn’t been told to go to ITU yet) we felt a great sense of relief that Sarah was out of theatre. It was also a relief that they had remembered Sarah’s request to cover her head. This may sound like a little thing in the context of everything else, but it was a big deal for Sarah and therefore a big deal for us.

 

The surgery was major – it took circa. 9 hours and due to the complexity it was not without its dangers. As a result, and coupled with some unexpected complications, Sarah ended up receiving eight units of blood during surgery.

To put that into context the average adult has between 8-12 units of blood in their body. Sarah had once again been saved by strangers who gave their time to donate blood (as well as the highly skilled surgeons, of course!).

Although through the surgery, Sarah was not out of the woods. She remained intubated until the following day at which point they started to bring her round. This was traumatic in itself, as they had to be sure Sarah could breathe for herself before the ventilator support was withdrawn. This was not straightforward.

Although obvious in hindsight, I hadn’t appreciated how unsettling it would be for Sarah waking from surgery and not knowing what day it is, how many days she had missed or even where she was. It was something that we (and more importantly the nursing staff) noted and something that would become significant once again sooner than we had anticipated!

 

“I told some of the nurses about the thoughts I was having on the ventilator; that I had woken up and not known what day it was or even where I was because I didn’t know what ITU looked like. I didn’t know how many days had passed or how long I had been down for.

The second (and third) time round I was ventilated, these nurses saw and even though they weren’t looking after me, they would come and tell me what the day was, what time it was and who was coming to visit me that day.”

 

There was a lot of swelling around the surgical site from the trauma of surgery and it would be some time until we knew what sort of functional deficits (resulting from the sacrifice of nerves) we would be dealing with, but at this point there were other concerns

The surgeons seemed happy with the operation, although they couldn’t comment in too much detail about the relative success of surgery until the pathology was back and they could confirm whether or not they were able to get a clear margin. Unfortunately, although not a surprise, we were told in order to remove the tumour the surgeons had to sacrifice 3 nerves – L4, L5 and S1. We knew this would probably affect foot control, but we wouldn’t know until the swelling subsided.

One further complication from surgery was that Sarah suffered a CSF leak. Cerebrospinal fluid (CSF) is the fluid in the spinal column. It is protected by a very thin membrane leaks can occur spontaneously or as a result of trauma/surgery.

During the week following surgery Sarah could do very little for herself and she was becoming increasingly confused. On the 2^nd Tuesday of what would subsequently be referred to as the Terrible Tuesday’s Sarah was taken for a 2^nd operation to try fix the CSF leak and make sure the rest of the wound was okay.

To Sarah’s horror she woke up once again in ITU on the ventilator and once again had to be awake whilst they decided how and when to remove the tube keeping her airway open. The following day was Sarah’s (and Kathryn’s!) birthday. We knew Sarah would be in hospital for her birthday, but never imagined she would still be in intensive care. The nurses looking after Sarah in ITU were very sweet, and they made her a birthday card, which they all signed. It was a simple gesture but something that meant a lot to Sarah.

During the remainder of the week Sarah’s antibiotics were constantly being refined to try and deal with the infection, but she still had a fever going from having a high temperature to shivering in moments. She also struggled immensely to manage any simple cognitive tasks such as choosing dinner from a printed menu. It was physically difficult for Sarah too; I have a very vivid image of Sarah wanting to look at her phone post surgery to see messages from friends and family, but she was unable to grip and hold the phone so we had to read the messages (and reply) for her.

The third of the terrible Tuesdays was the most traumatic. I received a call early in the morning from the doctor who told me Sarah had suffered several seizures and they needed to take her for a brain scan. Knowing Sarah’s mum would shortly be leaving home to visit Sarah and Sarah’s dad was already en route I knew they needed to be contacted urgently so they knew exactly what they were about to walk into! Sarah suffered 3 seizures by the time her parents arrived and 8 seizures in total by the time I arrived (about an hour later), one of which was on the way down to imaging. As a result Sarah had to be sedated so they could ensure she remained still for the scans and she would remain sedated for up to a further 48 hours. At this point we were all very concerned, not knowing if there would be any lasting impact or brain damage from the seizures.

The brain scans were inconclusive, which in a way was a relief because there was nothing obviously sinister. It appeared the seizures were caused by an infection entering her spinal cord and travelling up to her brain.

Eventually, after 3 weeks in intensive care, Sarah was moved onto Duke of Gloucester Ward where we were hopeful she could finally begin her rehab.

 

To support my fundraising and contribute to Sarah’s #FortisInArduis fund please visit this link – https://www.justgiving.com/fundraising/londonmarathonforsarah

Following the biopsy results we went to see the sarcoma surgeon at RNOH Stanmore to discuss Sarah’s diagnosis and the plan hereon in.

first-line treatment (noun) [ C or U ]

uk ​ /ˌfɜːst.laɪn ˈtriːt.mənt/ us ​ /ˌfɝːst.laɪn ˈtriːt.mənt/

The first method that a doctor chooses to treat a particular illness or condition

 

In order to help plan the first line treatment The London Sarcoma Service wanted some better quality imaging (X-RAY, CT etc) so they could determine exactly which areas had been affected by the tumour and to double check whether the tumour was still localised. The results would then be discussed at the Multi Disciplinary Team (MDT) meeting and the experts would explore and debate the best course of action (http://www.londonsarcoma.org/multidisciplinary-team-approach.asp). This is particularly important for sarcoma because they are often aggressive and resistant to chemotherapy and radiotherapy.

At the initial meeting with the surgeon we were told to prepare for surgery in 6 weeks or so; allowing time for the imaging results and to schedule the various surgeons. It felt like yet another long wait, but we felt (relatively) okay as there was a plan. We also sought comfort because the consultant was very particular on who he wanted to be part of his operating team (experts in spinal surgery, limb salvage surgery etc) – we knew the best team would be in place giving Sarah the best chance. In hindsight, perhaps it was also necessary because the operation was extremely complicated and potentially high risk.

We knew the operation would be major, and that it would result in loss of function to an extent (or in surgical terms “functional morbidity”….a term Sarah hated!). It was going to be a challenge, without question, but it wasn’t something we had a choice about or something we could avoid.

 

HOWEVER, when we went back to RNOH to discuss the scans and treatment plan we were thrown the first of many curveballs (each curveball for good reason, I should add!). The twist being, Sarah would have chemotherapy first; with that we were booked in to see the Oncology team at UCLH with a view of starting chemo in 10 days or so. Having mentally prepared for surgery, it was difficult to get our head around the prospect of chemo – especially starting with such haste.

 

Our first impression of the UCLH Macmillan Cancer Centre was a stark contrast to that of Stanmore. As we walked through the door we caught our first glimpse of the expansive modern atrium filled with bright eye catching art suspended from the ceiling.

 

Sitting in the waiting room was a surreal to say the least; we were in both a situation and place we never expected to be. Glancing around the waiting room we could see numerous patients who were evidently at various points through their course(s) of chemo and this gave us a sure sign of where things were going, even if we didn’t want to dwell on it too much. We couldn’t believe how many younger people were there, all muddling through their own life changing sarcoma diagnosis.

 

Sarah’s medical oncologist made an instant impression on us all. She was clearly knowledgeable, but more importantly she immediately instilled a much needed sense of calm in us, at what was probably one of the most turbulent times over the last 3 years. Importantly for Sarah, her oncologist was compassionate and empathetic; qualities that in the past we had felt some other medical professionals had lacked.

 

We went with a notepad full of questions, and one such question was whether we should go private, given we had private medical cover. It wasn’t the first time we had asked this question, and following a short discussion we were left with the same conclusion – we would not gain anything from going private, and in fact the NHS had several distinct advantages (one of which being the Cotton Rooms, which is an incredible concept and greatly improved our experience).

 

We were given the list of side effects to expect. They differed between the drugs, but included:

• Hair loss
• Nausea
• Affect on Fertility
• Neutropenia / Lowered resistance to infection
• Bruising or bleeding
• Anaemia
• Sore mouth
• Fatigue
• Changes in the way the heart works (therefore necessitating regular cardiac tests)
• Eye problems
• Liver function reduced
• Peripheral neuropathy / numbness in hands and feet

 

Understanding what to expect was necessary, but daunting. How shitty was the chemo going to make Sarah feel? And that was without any guarantee of it even working. We tried to remain positive though – we had too (that’s not to say we didn’t have our moments!). Thankfully, by this point IVF had gone well so we were able to park our concerns about fertility firmly at the back of our minds.

 

Sarah would begin on the “MAP” chemotherapy protocol ASAP; six cycles, each five weeks long consisting of doxorubicin, cisplatin and high-dose methotrexate. Effectively this meant we would be in hospital for 3 weeks out of every 5 week cycle…if things went to plan. Those 2 weeks at home would be when Sarah was at her “low” point and potentially feeling the most unwell.

MAP chemo is widely regarded as one of the harshest chemo regimes (although in our experience a lot of regimes purport to be the toughest….not that it’s a competition!). These mouth sores, just one of Sarah’s side effects, speak for themselves though.

 

On Sarah’s first day of chemo we went to have her PICC line inserted before heading to Ambulatory Care – a concept which is brilliant, and something we had no idea about before being thrust into this situation. The Ambulatory Care unit is for patients who urgently need care, but who don’t need to stay in hospital (https://www.uclh.nhs.uk/OurServices/ServiceA-Z/Cancer/acc/Pages/Home.aspx).

 

Essentially this meant that Sarah could have her treatment in the hospital setting and then reside in a local NHS run hotel (Cotton Rooms), rather than in the hospital. This service is cost effective because the hotel beds cost significantly less than those in the inpatient setting, and is much much more comfortable. Another benefit was that I could stay with Sarah overnight and family could visit during the day, without working around visiting hours. This was particularly important for our nieces and nephews because they didn’t have to visit what could otherwise be an intimidating hospital environment. Moreover this is something that would not have been provided had we gone privately, yet something that made the situation that little bit more bearable.

The other benefit of staying in London was that I could attempt to maintain some sort of time in the office for work. Sarah was without question my #1 priority, but we both felt (despite the support work had given me) that I needed to try and keep that source of income coming, especially as we anticipated her sick pay would run out around the time she finished chemo. It was strangely comforting to be able to see the hospital on the horizon out of the office window, although at times I wonder whether in hindsight I went back too soon. With so much going on in our personal lives, tolerance to stress was definitely compromised in my work life. Things that wouldn’t faze me normally caused stress, which in turn lead to a clouded view being cast upon everything, including Sarah’s treatment.

 

People generally don’t realise the cost of cancer. The financial side just adds another unwanted pressure and cause for concern. For instance, the person diagnosed would usually take a hit in their income, often their partner needs to take additional time off work (for the record my employer have been excellent in this regard!), there are increased expenses getting to and from hospital etc etc. For Sarah and I to get to hospital by train and taxi would cost around £60 per day….that isn’t even taking into account my train fare which is prepaid.

 

Food became another huge drain on money during our prolonged stay in London each cycle. Aside from just wanting to eat home cooked food, eating out in Tottenham Court Road most nights gets expensive! In fact choosing where to get food from quickly became somewhat of a chore too. We were brought food by family and friends a few nights a week, which provided us with a welcome change…and simultaneously took the strain off our wallets!

 

During Sarah’s first week of chemo we met another young woman with sarcoma, who I will refer to as Trisha (not her real name!). Trisha was a similar age to Sarah and was very bubbly and welcoming from the outset – someone we warmed to instantly. We would often see her with mum or her boyfriend and she’d recall entertaining stories and tales from treatment. Trisha was a few cycles (and chemo protocols!) ahead of Sarah and gave us some useful insight and tips about what to expect, and importantly showed us you could be going through something awful but still maintain a good sense of humour. She was genuinely one of the funniest people I have met and her quick wit would often have us in stitches. Trisha had recently changed drugs, having come off MAP chemo, post surgery and was adamant the new drugs were making her confused and forgetful. This was evidenced the following week when we randomly found a purse. We pulled out the owners driving license and didn’t recognise the photo at all, but it was in fact Trisha’s. We phoned the ward and it transpired that she had lost her purse two weeks earlier. What played on Sarah’s mind more was how the drugs had physically affected Trisha’s appearance, just as they had everyone else we saw in the waiting room….except in this case we could see the before and after photos.

 

With treatment underway we just had to take each cycle as it came, and hope that Sarah would fall on the good side of the stats – those who respond well.

 

If you would like to support my fundraising please visit – https://www.justgiving.com/fundraising/londonmarathonforsarah

This page links to a fund set up in Sarah’s name with Sarcoma UK. https://sarcoma.org.uk/fortis-arduis

“So I have just come back down to earth after an amazing wedding and honeymoon. God does reality suck, and to make it worse I seem to have a niggling back pain that isn’t my usual that was worse on honeymoon, Dubai in particular. About time to self refer for some physiotherapy and use our private medical insurance to create some shortcuts!!”

*Sarah using the massage chair, in an attempt to alleviate her nerve pain, whilst on our honeymoon.

 

Little did we know just how crucial it would prove to be that Sarah self referred. Sarah started physio in May, shortly after an expedited private referral, and initially physio went well. Midway through a 2 week gap between physio sessions the pain abruptly returned, and as such Sarah made another appointment. The physio was not happy that the pain had suddenly returned, with no apparent cause, and he discussed referral onwards for an MRI scan to check if Sarah had a slipped disc.

With her appointment booked (now June), Sarah went to see a private orthopaedic consultant, who specialised in spinal surgery.

“Nothing of note came out of the consultation and I felt there was a chance it was a disc problem but we agreed for X-ray of my hip and pelvis and MRI of low back. Now I didn’t expect to walk down the corridor and for them to fit me in then and there. But that’s what happened and I was relieved it was all done and I didn’t need to take time off work. My only worry was that they pulled me out of the MRI and suddenly I needed contrast. The next thing I had a bruised arm and was wondering how I was going to hide that at work-second week in new job and all!!”

Sarah had arranged to attend the next available clinic (the following Thursday) to discuss the results. However, she received a call from the secretary asking her to go back and have further imaging, and come to clinic at 8.30 am on the Monday. They were (understandably) cagey when Sarah probed for more information, but she was eventually told that there was an abnormality at the base of her spine and they wanted clearer images.

Monday 29^th June 2015 is a date that has been permanently etched into my memory. Sarah was very apprehensive about the appointment, so I had planned to go with her before shooting off to work afterwards. I was fairly flippant about the significance of the appointment, but I was aware how worried Sarah was, so of course wanted to be there.

I vividly remember the consultant ushering us into his room and he passed a comment which would soon make a lot more sense “I’m pleased you have brought somebody with you, Sarah, as we have something serious to discuss”. With that we introduced ourselves.

The exact words remain a blur, but the consultant relayed the key results – “there is shadowing on the bone, and it’s highly likely this is because there is a malignancy in the pelvic area”. We were gobsmacked to say the least. As I quickly racked my brain as to whether there was any context where the term “malignancy” may be used without reference to cancer, we heard a knock at the door. Sarah and I both turned to see a Macmillan Nurse enter the room.

Sarah needed blood tests and with that the consultant and nurse checked every box on the blood form that, was in anyway, related to the main tumour markers. Spoiler alert – the diagnosis was indeed cancer, yet only ONE of the markers showed as being anything vaguely out of the “normal” range.

We had a lot of unanswered questions but unfortunately these couldn’t be answered until a diagnosis was made.

Whilst waiting for the blood tests I emailed work, in truth still not really acknowledging the significance of anything we had just been told.

As we left hospital Sarah phoned her mum, who knowing about the appointment had cancelled her plans for the morning, perhaps almost expecting the news Sarah was about to deliver, given urgency we summoned for results . Shortly after, I phoned my mum relaying as much of the consultation as I could remember. Like the consultant, I didn’t use the word “cancer” – for some reason as there was not yet a firm diagnosis it didn’t seem right – perhaps it wasn’t cancer if even he didn’t use the “c” word?!

We knew though. We knew what malignancy meant, and we knew that it wouldn’t have been suggested light-heartedly. We very aware that it would be a matter of time before the official diagnosis confirmed our worst fears.

We shed tears with Sarah’s mum. We were all apprehensive and fearful, but we knew and reassured each other that we would be tackling this together, as a family, no matter how unfair and nonsensical it was. We remained in the mind-set that something was there, and that being the case it was best we knew so we could try and do something about it. Jill began to let Sarah’s side of the family know – a job that neither Sarah nor I could possibly have contemplated at that point.

Just wanting to be together, but not wanting to be at home, Sarah and I went out for lunch at a pub on the river Wey. Whilst Sarah looks happy, this picture doesn’t tell the whole story.

 

To support my fundraising and contribute to Sarah’s #FortisInArduis fund please visit this link – https://www.justgiving.com/fundraising/londonmarathonforsarah

The Challenge…

I’m once again donning the golf ball costume and raising money for Sarcoma UK.

https://www.justgiving.com/fundraising/londonmarathonforsarah

 

I will be running three marathons (yes, I’m keen!).

The marathons I am running are:

1. ASICS Greater Manchester Marathon on 7th April 2019
2. Virgin Money London Marathon on 28th April 2019
3. Edinburgh Marathon Festival 2019 on 26th May 2019

 

There is one major difference this time though; I will be running in memory of Sarah.

I’ve always loved this quote, but it seems even more poignant now…

“I run because I can. When I get tired, I remember those who can’t run, what they would give to have this simple gift I take for granted, and I run harder for them. I know they would do the same for me.” — Unknown

 

Running in memory of Sarah will take some adjustment as she was the person who supported me through training, encouraged me when I had doubts, and was there at the end of my previous marathons. I remain motivated though and I can hear her voice in my head offering words of encouragement (as well as telling me I’m mad!).

 

 

So why the golf ball?

In 2016 I did my third marathon. I wanted to do something a little different, and run in fancy dress and the Sarcoma UK awareness campaign “On the ball” came to mind. I have completed a 10 k, 1 half marathon and 2 marathons in the costume.

The message behind the campaign is centred on the size of the lump at diagnosis. If a GP correctly identifies the lump when it is smaller than a golf ball (5cm), it is more likely that the cancer can be treated successfully. However, most people are diagnosed with sarcoma when it is the size of a baked bean tin (10cm). 

You can read more about the “On the ball” awareness campaign here – https://sarcoma.org.uk/get-involved/other-ways-get-involved/order-ball-pack/about-ball

 

 

The Blog…

One of my main motivations for running in the golf ball is to raise sarcoma awareness and to spread the message that “Sarcoma Is Cancer”.

“If more people knew what sarcoma was, they would get that lump checked out earlier. If more GPs knew more about the signs of sarcoma, they could refer people earlier. The earlier sarcoma is diagnosed, the greater the chance of successful treatment.” Sarcoma UK

By sharing our story I hope people will understand more about sarcoma and the reality that those (often young, like Sarah) face. It is a brutal type of cancer, and sadly our story isn’t unique.

I will continue to bang the drum for Sarcoma UK and the people they are striving to help.

 

If you would like to support my fundraising please visit – https://www.justgiving.com/fundraising/londonmarathonforsarah

This page links to a fund set up in Sarah’s name with Sarcoma UK. https://sarcoma.org.uk/fortis-arduis