This post has been on my mind for days, clamouring to be written so that I cannot rest until it’s done. So here we go…(it’s long, I’m sorry)…
I feel very mindful of the fact that Ben’s death must have come as a terrible shock to most people, coming so suddenly and so soon after he’d been cheerfully joking about walking sticks and radiotherapy side effects in his last post, and so I want to explain a bit more about what happened during the three and a half weeks between then and the 3rd of January.
Looking back I feel like there were three stages really – leading up to Christmas at home, Christmas week in Canterbury Hospital, and the weekend/New Year in Pilgrims Hospice – so that’s how I’ll tell it.
The weeks before Christmas
The radiotherapy all went very smoothly, though all the going to and from hospital every day had taken its toll and Ben was desperate for the four days off from travelling before the next planned trip to London. His mobility was getting worse all the time and getting up the stairs was becoming a major mission, as was getting up off our bed, and increasingly I was having to help lift or steady him. It was really frustrating and upsetting for Ben, and for me too, being so helpless – only able to offer solutions that Ben hated the idea of (moving our bedroom downstairs, getting a hospital bed for him etc).
It was so much for him to adjust to, and the goal posts just kept shifting and shifting as his mobility got worse. I suggested he write a post about the emotional struggle he was going through and he started writing the post below…
Will the real Ben please stand up?
Ermm… no he can’t, he’s stuck on the toilet and can’t get up.
True story… not one of my favourite stories about myself, but I thought I’d share nonetheless.
Yep that’s right folks, my fatigue and muscle weakness seem to have passed some kind of critical tipping point, whereby I am to all intents and purposes… now useless.
As I have mentioned in previous posts, we knew we were heading along this path with the radiotherapy, but the rate of decline over the last couple of weeks has really taken us by surprise. This has been the toughest and most demoralising period we have faced so far. So I decided to write a little about what we are struggling against, and how it is affecting us emotionally.
Normally I do the emotional stuff after the fact (because during the hard times I feel less inclined to write the blog). But this time I’m going to write in ‘live emotion’ – for two reasons;
1 – it’s how I’m feeling right now, so why write any differently;
2 – I want people to understand all aspects of fighting cancer – both the good and bad times (note to self – need more good times).
I don’t know how Ben managed to be so relentlessly hilarious about the most awful situations, but he did – and that’s how he kept himself (and the rest of us) going I guess. I wish he’d got round to writing the rest of this – I think it would have been an amazing post. He wrote it sometime during the week leading up to Christmas – the week following the radiotherapy. On the Monday an OT had visited and in an hour got Ben to agree to having a whole host of aids sent to the house (a commode, bars for the bed, a bath lift…) and rails fitted along our terrifyingly steep stairs. Though he agreed, he felt really down about it – having changes made to your house feels permanent doesn’t it, and that’s just what he was afraid of – that he would be significantly disabled for the rest of his life.
Twice that week we had to travel up to London – for a clinic and vaccine appointment on the Wednesday, and chemo on Friday. It was really stressful – on several occasions on the Wednesday Ben’s legs nearly gave way and I had to quickly find a chair for him, or try and hold him up in the middle of the street. On Friday we used a wheel chair we’d borrowed, but still getting into and out of the car was really hard. He was so so determined to get that treatment if there was a chance it could help him hold onto life for a bit longer.
Ben was exhausted by the weekend and had decided he wasn’t going to leave the bedroom until Monday morning when we were planning on travelling to Wiltshire to spend the Christmas week at his Mum’s (we’d hoped to camp out there, be looked after, and let people come to us).
While I spent the weekend preparing for our trip, Ben spent the weekend resting and dozing. By Sunday evening the packing was done and we were ready to leave the next day. Unfortunately that’s not what happened. Ben can tell you the next part…
I’m actually writing this from Canterbury Hospital, where I have spent the last few days… yes, including Christmas Eve, Christmas Day and Boxing Day.
Why is that then?
Well, on Sunday night I experienced one of my worst fears about this disease – I had a seizure. Sally discovered me convulsing on the bed and immediately called an ambulance.
I don’t really have much memory of this, but I do remember an intense form of confusion. I kept forgetting things people said to me, my speech wouldn’t work at all – I couldn’t get my words out, and if I did they were the wrong words or at least in the wrong order.
When I came round I was sat on the bed with an oxygen mask on, with Sally and two paramedics. Unfortunately due to our steep narrow stairs, they weren’t comfortable getting me down to the ambulance, so we waited while they ordered some kind of ‘Special Forces’ paramedics who specialise in awkward rescues.
Once they arrived, and after much discussion I was literally tied up in a wheelchair and carried down the stairs to the waiting ambulance, and then off to Canterbury Hospital, which is where I have been since.
Upon arriving at the hospital I had stabilised a lot, but there was still a lot of confusion in my head, I was really struggling to answer the paramedics questions – which was quite frustrating.
The doctors also decided they needed blood tests from me. Now, these eight cycles of chemo have screwed up my veins, and getting blood out of me or getting a cannula into has become almost impossible. An hour or so later, and a number of staff had tried and failed, so we decided to give it a rest – they even tried my groin several times, which wasn’t much fun.
Christmas week at Canterbury Hospital
So as Ben says in this untitled draft (which he wrote on Boxing Day night, I think), we spent the Christmas week, from the early hours of Christmas Eve until Friday 28th, at Canterbury Hospital.
Christmas Eve was intense – a whirlwind of consultants, junior doctors, palliative care specialists, nurses and physios buzzed in and out of the room all day. Ben’s family (and Saskia) who had all been in Wiltshire expecting us to join them had hastily shoved the presents, the mince pies and a few clothes into their cars and raced over to Kent to be with us. Luckily there was a day room on the ward where a few of us could always relax while others visited Ben so we didn’t have to have the whole clan crowded into Ben’s room at once (another plus – Ben had his own room, complete with en-suite bathroom).
In terms of seizures and their after effects on Ben’s speech, he slowly improved throughout the day. He had had another small one in the morning, and during the morning he was still unable to speak properly. To our huge relief however, he slowly regained his ability during the afternoon, and though slow and a bit muddled sometimes, he could hold a conversation.
The other medical issue was a large quantity of fluid that had collected in Ben’s abdomen, making it hugely swollen and tight like a drum. With the Christmas holiday looming, the doctors wanted Ben to be as sorted as possible before it became only a skeleton staff, so that afternoon they put in a drain and took out several litres (to Ben’s relief it was nothing like as painful as the lung drain he’d had a few weeks before).
Christmas Eve night, and the rest of the nights while Ben was there, I slept in a recliner armchair in his room. As everyone does in hospital (and as any of us would after something as scary as a seizure) Ben felt vulnerable and didn’t want to be alone over night. Now I look back I’m so glad I could be with him all that time – we had a few good midnight chats – the last ones we would have it turned out.
Christmas Day and Boxing Day were blissfully doctor-free (no offence to them – they were great – but no one wants to see the doctor on Christmas Day) and we were able to cobble together our own festivities in the day room, putting our presents under the Christmas tree, noshing on sherry and mince pies, and the very decent hospital roast dinner and trimmings. Ben was too sleepy to join us in the day room on Christmas Day itself, but did enjoy several hours on Boxing Day opening his presents and watching Saskia play with her new toys. Here are a few pics…
Thursday arrived and so did the doctors and decision-makers – Ben hadn’t had any more seizures and was considered stable enough to leave the hospital. Over the previous few days Ben and I had discussed what to do next and he had come to terms with the fact that his mobility was so compromised that he couldn’t go back to living in our top floor bedroom, and that we would have to move downstairs and have a hospital bed put in. This would all take a while to set up so we decided that in the meantime he would go to Pilgrims Hospice for a week or so to get some respite, work with the physios on his walking and movement in general and give us the time to organise the house for him to come home. So on Friday we moved to the hospice and settled Ben into a lovely room of his own, with a large patio window looking out onto the gardens.
At that point we had NO IDEA that Ben had so little time left. As crazy as it seems now, we all thought there would be at least a couple of months more, and we were still talking of getting to see the Professor at St George’s a few weeks later. When I say ‘we thought’ I don’t include the medical staff – I dare say they suspected that there was very little time left – but we’d decided not to ask the ‘how long’ question right back at the start and that, plus our code of staying positive, kept us optimistic (albeit maybe blindly by this stage). We knew that we were going to have to ask the question soon, and that the treatment was looking increasingly less viable, but still we thought there were weeks ahead of us at least in which to make those choices.
The weekend and New Year at Pilgrims Hospice
The weekend began well, with a visit from some of Ben’s aunties and his uncle, bringing more gifts and lots of smiles and hugs. Although he was very sleepy and drifted off from time to time he loved seeing them, and playing with all his new toys (yes most of his presents were toys – he always was half ten year old, half grumpy old man, I thought).
The sleepiness of that afternoon soon became the norm. Increasingly Ben was asleep more than he was awake. He would start sentences and then fall back to sleep in the middle of them. We hoped at first that this was just drug side effects, but sadly, as it was later explained to us, this was part of the dying process.
Over the days the nurses and I witnessed a number of what we thought were mini-seizures and that I think was his brain giving into the cancer at last. The blessing was that Ben wasn’t in a great deal of pain. He did find it painful when the nurses had to move him around on the bed, but with strong painkillers this was minimised, and they avoided bothering him as much as they could.
There had been another cluster of ‘skeleton staff’ days with the weekend and New Year, and Wednesday saw the return to work of some of the key people responsible for Ben’s care. That afternoon Ben’s mum and I were asked to meet with some of the doctors to talk about Ben’s condition. Finally we knew we had to ask the ‘how long’ question. The consultant said, ‘Well, given how quickly Ben has deteriorated in this short while….’ I finished her sentence, ‘It could be just a few days’. She nodded, and maybe in her mind she was thinking ‘or just a few hours’, but she didn’t say so.
We quickly made calls to family and friends – ‘Please come soon’. That night Ben’s mum and sister joined Ben and I at the hospice – we ate chocolate and watched David Attenborough talking about giraffes on the telly. Ben wasn’t conscious most of the time but I’m sure he could feel us all with him by his side.
That night I went to bed in my usual camp bed that the nurses had given me at 11 or so. In the night I woke to Ben coughing. It took a while to pass and during that time I sat up with him, occasionally talking to him a bit – I’m so glad I did. Around 3am he was peaceful so I went back to bed and fell fast asleep. I was woken at 7am by the nurse – Ben had gone.
I’m not going to say much more – this is very long already. I hope this is helpful, to know what Ben’s last days were like. They were difficult and sometimes frightening, but they were not painful (not very much so), and he had lots of lovely moments with his family around him, he celebrated Christmas with his little girl, and at the end he went peacefully.
There’s so much more I could say – about how I feel, and what a thoroughly wonderful husband Ben was. But there’s time for that, and the funeral will give us all the opportunity to share our feelings and stories.
One final word…I would like to thank all the staff in the Brabourne Ward at Canterbury Hospital and also at Pilgrims Hospice. They were so kind and thoughtful towards all of us and I will always be grateful to them for how they carried us through these difficult days. Thank you.