I’ve been meaning to write this blog for a few weeks now, but I genuinely haven’t had the time or space to turn my thoughts into words. Life has many ways of testing a person’s will, either by having nothing happen at all, or by having everything happen all at once. For my poor family, it seems as though everything happens at once, on repeat. 

Receiving the pancreatic cancer diagnosis

As many of you will know, my mum was diagnosed with locally advanced pancreatic cancer in July 2018. It was a difficult few month for us, as I fought for healthcare professionals not to ‘give up’ on her. After 168 days, we finally succeeded and mum underwent surgery to remove the tumour and tail of her pancreas in December 2018. Monday 17th December 2018 was hands down the worst day of my life… not knowing whether she would survive or not. I can’t begin to describe how I felt when the surgeon called at 6pm to say everything had gone according to plan. Give or take a few set backs, we brought her home in time for the New Year, filled with hope and optimism for a happier and healthier 2019.

Just when we thought we were over the worst

Mum slowly but surely built up strength, and was doing really well. We were back to having our mum and son coffee afternoons of a weekend here and there, and she was starting to enjoy family meals out again with Dad and I, now that her digestion issues had seemed to improved. The surgeons were happy with her, but we were routinely referred back to the Oncology team again, since chemotherapy is typically offered as an adjunct therapy to surgery. We went for the scans and more blood tests, expecting good news – but it’s not what we got. The CT scan in March 2019 showed that there was one tumour on her liver, which they believed to be a metastasis from the pancreas – one which must have presumably spread from the pancreas before they had operated. A second tumour on the liver was then identified by an MRI scan in April 2019. As I watched my mum’s eyes fill with tears, there I was in the consulting room at the hospital telling her how we’ll tackle this like we tackled the last one. Inside, I was screaming – filled with rage and anger towards systems and people who had made my mum wait for over five months from diagnosis to receive any treatment.

If they had operated sooner, we may not have been receiving this news today.”

I never spoke these words to my mum, but it’s what I was thinking, and to be quite honest, is the truth. There’s no guarantee that earlier intervention could have prevented this situation, but it could well have helped. Though taking this stance now would be of no use to my mum – and isn’t the way either of us really deal with things. All we could do is get on with sorting it out, which is what we all agreed. Mum was to begin six cycles of chemotherapy, with a drug called Gemcitabine, which is routinely used to treat pancreatic cancer. It would be a long six months ahead, but we were ready to face it.

On Monday 20th May 2019, I took mum for her first treatment with Gemcitabine. It was a long day since it was the first treatment, but she coped brilliantly and felt fine after the infusion. It felt as though it was another hurdle overcome on the road to managing cancer. However, after so much use over the years, mum’s veins had become so small, making it really difficult to cannulate her. So with the oncologist, the plan was for her to have a portacath fitted on Thursday 23rd May 2019. I took her to the hospital on Wednesday 22nd May for all of the necessary tests beforehand, and she was good to go back the day after for it to be fitted. However, we didn’t get that far…

The fall

We arrived home after the rush hour traffic from the hospital on the Wednesday evening. The tea (or dinner for you non-Northerners) went on, and mum then went for a shower, ready for her portacath to be fitted the day after. Despite her mobility and health problems, she is fiercely independent, and insisted she was fine in the shower. She has a stool in the shower to sit on to make it easier, so everything was left ready for her. Dad was pottering about in the kitchen, and I was sat in the lounge in front of my laptop analysing transcripts from interviews I had conducted for my PhD – a typical evening in our house you could say! The next minute, I heard the most almighty bang – knowing instantly that she had fallen. My laptop flew up into the air, and I ran to the bathroom. Living in a bungalow, that took all of about three seconds, but it felt so much longer.

Our bathroom isn’t very big (as you can see from the picture below), but what I saw before my eyes that night was truly devastating. Mum had fallen into the space shown below in the white circle – a space you or I couldn’t position ourselves in if we tried! I instantly knew what she had done – which had been to lift the stool out of the shower to put it back under the cupboard in the corner – despite being told to leave it be in the shower… but that is independence for you. My mum was screaming and crying, having fallen with some force and from standing to be lay on the floor as she was. It was heartbreaking. From looking at her, I could see that either her right arm was fractured, or her prosthetic shoulder was dislocated. She had hit her head, there was a puddle of blood on the floor, and she was terrified that she had damaged her two hip replacements. I shouted to my dad to call 999, but I didn’t hear him speak. While I was knelt on the floor wrapping mum in towels, adding pillows behind her head and trying to cushion her, my poor dad was stood in the lounge in a state of shock, gazing at the phone. I grabbed it, dialled 999 and spoke to the operator. They said an ambulance crew would be out as soon as possible. As I did, he sat down, grabbing hold of his chest in pain. Having had a quadruple heart bypass eight years ago, I was praying he wasn’t having an attack – because I really would have been stuck! Thankfully not, and it was just the shock. At 75, he is just no longer able to cope with stressful situations like this.

The space (highlighted within the white circle) where mum fell.

Unfortunately, we had to wait over 90 minutes for an ambulance – not at all the fault of our amazing ambulance crews, but the fault of a system which doesn’t have the resources to cope with the demand needed. They arrived at around 11pm. After 2 hours, three paramedics, dismantling of the shower, and lots of entonox and morphine, the paramedics reluctantly manipulated her arm onto her chest, just so that they would be able to lift her out of the ridiculously tight space she had fallen in.

They were then able to wrap her up, and move her into the ambulance. As they were working, I raided the medicine cabinet, collected all of her tablets, injections, needles, creams and so on, filled her ‘hospital bag’, and packed dad into the ambulance with mum. I of course wanted to be with her every second, but I couldn’t risk my dad driving down to the hospital in the state he was in. As the ambulance set off, I followed right behind in the car. She was taken straight through to X-ray, and was into a cubicle within minutes. As the hours passed, we saw multiple health professionals, who confirmed mum had fractured her right humerus immediately beneath her prosthetic shoulder joint. At this point, one of the on-call orthopaedic surgeons came to us to say that this would need to be operated on. Mum was semi-conscious at this point, and so I gave my consent for her to have the surgery – not knowing what to do for the best. Fix the arm and risk a general anaesthetic with everything else that is ongoing, or for her to have to live with a broken arm? Nothing ever prepares you for these situations.

Mum was moved to a side room onto the elective surgical ward at around 5am, and was made as comfortable as possible. As she was drifting in and out of sleep, I decided to take dad home so he could rest. I managed to get an hour or so of sleep, before heading back to the hospital. At this point, mum should have also been going to have her portacath fitted, so I spent some time getting through to different teams at different hospitals to inform them of what had happened.

The week after the fall

As I walked back onto the ward, my mum looked so frail. I genuinely do not know how she had survived such an horrendous fall. She began to come out in bruises, which more or less covered every inch of her body, from head to toe. After seeing different orthopaedic surgeons, it was felt that they wouldn’t be operating straight away, until they had consulted with a wider team, given mum’s complications. She was moved onto another ward, and placed in a side room. She was very immobile, and simple movements were incredibly difficult. She was screaming out in pain, and I felt completely helpless. Frustratingly, she had been prescribed paracetamol to manage her pain – which was evidently going to do nothing for a lady, then aged 67, with such horrendous trauma, as well as all of her other conditions which cause pain… and the cancer. It wasn’t the nurses fault as they were prescribing what had been wrote up, but I asked that the doctors change this to a stronger painkiller, and that they bring the pain team down to see her so that she was comfortable. The night after we had left, at about 11pm, I received a call from my mum on her mobile – God know’s how she had managed to call me with her left hand (she doesn’t recall doing it either) – and she just sobbed down the phone at me because she was in excruciating pain. She was begging for me to do something to take the pain away – at which point I said I’ll sort it. I put my phone down, and couldn’t contain my tears. I contacted a good family friend who had the knowledge of who to contact at the hospital out-of-hours to get mum the help she needed. After leaving a message for the site manager, I received a call back at around 1am to say they had taken doctors to see mum, and had modified her pain management to make her more comfortable. Thankfully after their intervention, she was more settled, which meant she would also be able to build up her strength slowly.

A week at home before surgery

After a very long week in hospital, it was agreed that they would be operating on mum’s arm on Wednesday 5th June 2019. From a medical point of view, there was nothing else they were going to do in hospital, so we all agreed that it would be best for mum to come home, to where she would be more comfortable. With her arm casted up, we packed up and I wheeled her out to the car. Only when you are so weak do you realise the significant effort and exertion it takes getting from the wheelchair into the car, and from the car into the house. It really took it out of her.

Everything was ready and waiting at home for her. From the raised toilet seat, to pressure cushions, neck pillows, a bell and everything in-between! Over the next week, I did everything in my control, with support from dad, to keep mum as well as possible for surgery. She was still incredibly sore from the fall, as well as the fractured arm, and the knock-on effect on her overall mobility. She was, and still is, unable to get out of bed on her own, as well as out of the chair in the lounge. It really goes to show how a few days of being off your feet can result in weeks and weeks of further immobility.

We soon had our daily routine in place. During the night, I was ‘on call’ should she need the toilet or pain relief. She had the doorbell, and I had the receiver in my room – a super cheap hack which has proven to be invaluable! In the mornings, I helped to get mum out of bed, first stop always being the bathroom, before getting her settled in the lounge in her chair. It was sit down, blanket over, neck cushion on and feet raised, before testing her blood sugars and injecting her insulin. Breakfast would follow, with mum not feeling like anything to eat or drink, but with me bringing small bits of food to her, and drinks, on a regular basis, so as to try and keep her strength up. After having some time to ‘get going’ in the morning, I would help her to wash, moisture her skin and feel a little more human. It’s often the little touches which can help you to feel just that little more brighter isn’t it? Then lunch, then dinner, with intermittent trips to the bathroom in-between, guided by me linking her from the chair to the bathroom. The digital thermometer appeared throughout the day, as did the blood pressure monitor since she had very low blood pressure – typically picking up readings of 80/40. It’s no wonder she often felt dizzy and unbalanced. Blood glucose readings continued, as did insulin before meals, the pots of tablets she needed to take, the injection I had to deliver each day at 5pm to control her blood clotting, and the oral morphine in the syringe to help manage her excruciating pain. Thankfully, we managed to keep her pain relief topped up regularly when she was home, so we had no more flashbacks of her screaming out in agony for help. Throughout the day, she slept and slept, either in the chair reclined or in bed. That’s definitely one thing I’ve noticed she has needed lots of. After dinner, she would worsen pretty quickly in terms of energy and how she was feeling. So, we would get her back into bed, give her a dose of oral morphine, apply painkilling gel to tender areas, inject the long-acting insulin and administer her eye drops controlling the pressures in her eyes – oh and another set of ‘obs’ to see what her temperature and blood pressure was. I’d often joke that she had a self-made doctor, nurse, physio, OT and pharmacist all-in-one!

This was, and still remains, our daily routine, even after surgery, which took place on Wednesday 5th June 2019.

Time for surgery

We had been verbally told that mum would be operated on by two highly experienced surgeons on Wednesday 5th June. When she was discharged from the ward the week before, we was told we would hear something ‘soon’ with further instructions. Monday came, and we had heard nothing – so on went my care co-ordinator hat once again, to try and work out what was happening. I spoke to several secretaries, nurses and admission staff who couldn’t ‘find’ any record of mum, on either elective or trauma lists. Eventually, on the Tuesday afternoon, I received confirmation that mum was going to be admitted (and that there was a bed on the elective ward for her). Early planning for this was also essential for mum, since she has to stop her anti-coagulation injections 24 to 48 hours before any procedure. We was told to have her at the hospital for 7.30 am on the Wednesday morning. Although she was on the afternoon list, they wanted to run a series of tests during the morning. We turned up, and the bed wasn’t quite ready, so we waited in the day room. Thankfully while we were waiting, the anaesthetist and both surgeons came to see mum, dad and I, which was ideal, since they were not all fully informed of all of mum’s other health conditions – several of which the anaesthetist needed to be informed about. This is yet another example of why current management of health records is a patient safety risk, especially when people are seen by specialists across five separate hospital trusts – though that’s a blog for another time!

The anaesthetists and surgeons assumed I was medically trained – seeming surprised when I said I wasn’t (beyond my science degree) – they get to see the knowledge and experience that an informed patient and carer really has! It was 10 am by now, so dad and I left mum settled in her chair next to her bed with some magazines, before we went home. Dad was tired, so he went back to bed, and I got on with cleaning, washing and sifting through work emails, before heading back to the hospital on my own for about 12 pm. Mum was still there, and I had a good couple of hours with her before the theatre staff came for her at about 2.30 pm.

Given mum’s existing health conditions, we know that general anaesthetics are particularly risky for her. I knew exactly what she was thinking as she lay on the bed, saying how much she loved me and dad, and for me to take good care of him. Holding back the tears, I told her I expected to see her up and bossing dad around later that night, as I kissed her cheek and told her how much I adore her.

I couldn’t keep my mind focussed that day at all, so I went and spent the afternoon at my auntie’s, who was looking after her grandson (and my godson). He helped to briefly take my mind off things at least! I kept in contact with dad, and was back home later in the afternoon. As the clock ticked, I kept thinking, she’ll be still in there now, then… she’ll be in recovery by now for sure. The clock got to 8 pm, then 9 pm, then 10 pm and we still hadn’t heard anything – now some seven hours after she went down to theatre. I kept calling the ward, but they didn’t know anything. I kindly asked them to just give me a very quick call just to let us know she was okay, which we received at about 11.45 pm. Mum had experienced very low blood pressure during surgery and in recovery, which meant they kept her there for longer before feeling satisfied for her to return to the ward.

The days after surgery

As soon as we were allowed onto the ward the day after, we were there! She was very dozy, but her pain seemed reasonably well controlled. You can see below what these two amazing surgeons managed to do. While this isn’t mum’s X-ray, it’s very very similar! The surgeons told us that they’ve done the very best that they could, given that her humerus had fractured beneath the prosthetic shoulder joint, and then thanks to her osteoporosis, had shattered into several pieces. There are still several bone fragments within the shoulder and arm, which they were unable to remove. They also said that mum would never be able to put much weight through her arm, so a good outcome for her would be for her to be able to do day-to-day tasks without too much pain.

Image taken from an article published by Wutzler et al (2009), accessible here: https://www.ncbi.nlm.nih.gov/pubmed/18807052

Over the next few days, mum had some ‘okay’ days, and some ‘not so good’ days, as can be expected. What she had lost since the fall was her confidence, as well as becoming significantly weaker in general. We experienced quite a few issues with mum being left stuck and unable to do things (which I’ll cover in another blog), so we were glad when the consultants were happy for her to come home to recover on Monday 10th June 2019.

After waiting hours for medication from pharmacy, mum was free to go! Another car journey for mum took it out of her, so she was so glad to get home, and into her freshly made bed, which was much more comfortable than those hospital beds! We knew it was going to take some time for mum to be able to get to where she was before her fall, but as I have kept saying to her, ‘slowly but surely.’ One of the hardest things for mum, and for me to witness, is to see her loose a lot of her independence and confidence – which I’m determined to ensure is only temporary until she has the strength to do things again under her own steam.

It’s not just the arm, but everything else too

The arm had been the focus of everything over the last few weeks, but as mum settled back home, we are also reminded of the fragility of mum’s health, and the significant amount of issues she is still having to cope with, on top of a really nasty fall and break. Over the five weeks since she returned home after surgery, we’ve been dealing with attacks caused by low blood sugars, low blood pressure, pancreatic enzyme insufficiency, leg and abdominal oedema, low urine output, urinary tract infections, among many other things! Collectively, these really zap mum of all of her energy – physically and mentally.

I’ve been on the end of the phone to countless different healthcare professionals, and thankfully with the help of our oncology specialist nurse, mum is finally taking pancrelipase (pancreatic enzyme replacement therapy) to help her digest her food properly. She has had a week on the enzyme replacements, and we are slowly beginning to see a change in her digestion, which will hopefully mean that she begins to absorb nutrients better to build up her strength, while limiting the horrendous side effects she has been experiencing.

We also had a few worries when she was going more than 24 hours without passing urine. We were all concerned about her kidney function, especially since she has glomerulonephritis as a result of her lupus diagnosis. The immediate comment from one too many health professionals was ‘you need to drink more’ – failing to listen to mum or I when we were saying that she was having between two and three litres of water a day. It was going in, but not coming out! Thankfully, her kidney function was satisfactory, and another GP home visit resulted in mum stopping her diuretic for the oedema – which the GP believed to be actually making her more dehydrated without removing the peripheral oedema. It certainly seems to be helping (though the oedema is just as bad) – but it’s another example of how de-prescribing can be useful.

Taking each day as it comes

It’s so difficult to predict how mum is going to be from day to day – well in fact, from hour to hour! It is also taking her much longer to gain her strength back. At the moment, she’s still unable to get out of the chair and bed alone, and so needs myself and dad around to help. While dad still likes to think he is able to do what he did when he was in his 30s, he doesn’t like to remember that he’s in his 76th year, and cannot physically do what he used to do. It’s why I’m so thankful that I’m still at home to be able to care for mum (and dad too), which I would do time and time again without hesitation. Over the last few months, mum has got herself upset a few times when she thinks she is a burden – something I tell her off for saying. She has never, and will never be that, though I fill with tears when she thinks of herself in that way. As I tell her each night, I love her and would do absolutely anything for the women who brought me into this world – and she knows that.

Over the last few months, I’ve been noticeably absent from quite a few things – conferences, social media, work, and coffee catch ups with friends! Now you can see why. I was initially on authorised absence from my PhD for one month, but that has now ended. So I am back to juggling caring for my mum full-time, while trying to hold down a full-time PhD, my self-employed freelance work, my patient advocacy work, and my own chronic health conditions. It has taken its toll at times, physically and emotionally, though there’s something within me that just keeps going – for her. I’m thankful to the friends, who know who they are, who have listened to me cry my heart out down the phone, and who have helped to carry me through some dark days. Since the middle of May, I’ve had a handful of opportunities out of the house – typically dashing to the supermarket to do the weekly food shop, or nipping to the hospital for my own appointments. Though whenever I have been out, I have always been on ‘pins’ – worrying that I need to get back. For the first time this weekend, I spent an hour or so having a cuppa with a friend – though I did feel guilty for doing so (though I would never say that to my mum!) I know it sounds mad, but it’s reality – even though I’d be saying exactly the opposite to other people with caring responsibilities when telling them to make sure they have time to themselves too.

In the weeks ahead, I’m hoping mum will pick up strength, and hopefully resume her chemotherapy treatment after our oncology appointment on Thursday 11th July 2019. I am so incredibly grateful for my wonderful friends, family and colleagues who have been so incredibly supportive in recent times. You really do learn who is there for you during difficult times – ready to offer a helping hand and a shoulder to cry on whenever you need it. To those who have been there – thank you. To those who haven’t quite understood why I’ve not been able to ‘say yes’ to whatever you needed from me, I hope you can appreciate why I didn’t have the time or space to do so. It’s certainly at times like this that you realise what is important in your life, and the people who you value in your life.

Here’s hoping for a more optimistic few months ahead! 

Written by simonrstones

Simon R. Stones BSc (Hons) is an award-winning patient advocate, consultant and researcher from Manchester in the UK, who was the winner of the international WEGO Health Award for Patient Healthcare Collaborator in 2017. He is a passionate advocate and ambassador for people living with invisible illnesses, inspired and empowered by his own journey with juvenile arthritis, fibromyalgia, and inflammatory bowel disease since childhood. He is currently an Associate Fellow of the Royal Commonwealth Society, a trustee of Fibromyalgia Action UK and RAiISE, and board member of the European Network for Children with Arthritis (ENCA) and the European Network of Fibromyalgia Associations (ENFA).

3 comments

  1. Bless you all Xx
    I see what you mean by us all experiencing falls!

    Sorry to hear that it’s been like this and I do hope that you can secure some healthcare help for your parents whilst you are busy doing your work and also hope that you are managing to cpe with your own health too at the same time.

    Healing thoughts for you all ~ Carole

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  2. Simon, thank you for your personal story to share with us. I think without people like you patients – including your dear and brave Mum would be defenceless and they could not recover in the optimal way. I believe we do not realize that one of the basic pillars of the sustainable healthcare systems are the patient’s carers and their families. I am so glad your Mum had you around! God Bless Her and You and your Father and I wish her all the best in her recovery.

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