by Jane Plume
The pain specialist came to see Shaun soon after we arrived to talk through the options with him. They mutually agreed which route he was going to try and, in no time, the wheels were in motion and the nurses were regularly bringing Shaun the new painkillers. I made sure he was settled and then left him to get some rest.
That afternoon, I was at Shaun’s house when Lewis and Ashton came home from school. ‘Hello, kids,’ I said brightly as they came through the front door.
They smiled at me, putting their bags down on the kitchen table. ‘Where’s Dad?’ asked Ashton.
I went over to them both and put what I hoped was a comforting smile on my face. ‘Your dad has been feeling very sore lately,’ I said, hoping that Ashton would understand my words. ‘He’s staying somewhere where they can help him with his pain. But don’t worry, you can visit him and he’ll soon be home.’
Both boys looked anxious.
‘You know that I’m here for you both, don’t you?’ I said, reassuringly. ‘And that you can always talk to me if you feel worried, or just want to blow off steam.’
‘We know,’ said Lewis quietly. I gave him a smile and, eventually, he smiled back.
I was so proud of them – both boys were so brave in the face of what must have been frightening news for them.
The following day Shaun had a scan so that the doctors could monitor the latest progress of the cancer and find out why his health had declined so rapidly, while he continued with the new painkilling treatment. Happily, within a week, Shaun’s pain had improved, albeit only slightly, and he was discharged from the hospice.
But it wasn’t yet time to go home. Instead, we went straight over to the hospital to get the scan results together. We were ushered into his consultant’s room and sat nervously as Shaun’s doctor closed the door and pulled up a chair to talk us through what they had found. Shaun’s consultant was a very caring lady, but I could see in her face that something was wrong. It was bad news. The tumours in both of Shaun’s lungs had multiplied and become bigger, and there were further tumours visible on his liver. After much discussion it was decided that Shaun would need to commence chemotherapy again, sooner rather than later.
Shaun simply nodded his head, stoically. ‘I was expecting that,’ he told her.
I don’t know how he must have felt. His facial expressions gave nothing away. It was as though he was numb.
As we drove home from the hospital we both tried to be positive.
‘Look how well you did last time on the chemotherapy,’ I reminded him. Shaun nodded and gave a half-hearted smile, but there was fear in his eyes, mirroring my own feelings. Was this the beginning of the end?
We went home trying to be positive but within only a few days Shaun was back in the hospice as the pain had become unbearable, yet again. While he was there Simon, another specialist, came to see him and offered him a nerve block to try and numb the side where the tumours were causing the most pain. He was a wonderful man, very understanding and easy to talk to and Shaun liked him instantly. He had the procedure done, and the result was unbelievable. Shaun barely had any pain at all. He said that having no feeling in the left side of the chest was a weird sensation but he was more than happy to put up with that.
Simon also decided that he needed another scan so that was arranged for the following day, but neither of us thought too much about it. After all, it had only been three weeks since the last one. What could possibly have changed in that amount of time?
How wrong we were. In just three weeks the existing tumours had rapidly grown and, there were also metastases – or secondary tumours – in the pancreas and the adrenal glands in the abdomen. It was devastating news but, once more, I tried to be as optimistic as I could in front of Shaun. Lewis and Ashton were being stoical, brave boys, but I knew that the news that he needed more chemotherapy would be devastating to them.
On the strength of these results it was decided to start the chemotherapy straight away. Shaun was to have a different chemotherapy treatment to the one he had had two years earlier, but as before it would be six treatments, twenty-one days apart.
I offered to accompany him to the hospital on the day he was to receive the first lot of chemotherapy. Gina had always gone with him previously and I didn’t want him to feel he had to face all this alone.
Shaun had the first dose of chemotherapy and his body’s reaction was totally different from the first time around. By that evening, he was constantly vomiting and felt terrible. It affected him so much that I had to take a couple of days off work to care for him and the boys, as well as my own children and home. It was around nine days before he felt almost normal again, but the weight continued to drop off him, he was constantly tired and the pain seemed to be worsening day by day. He was again admitted to LOROS. This time they decided to try him on methadone, which meant he would need to be there for at least a week. Shaun was really unhappy about that but I managed to convince him that I could manage everything outside of the hospice and finally he agreed to stay.
By this time, Ashton and Lewis had sadly grown used to the fact that their dad sometimes needed to spend time in hospital. This time, I explained, it was going to be for a bit longer. I tried to put it simply to Ashton, saying that Daddy needed to have some ‘special medicine’, but Lewis later actually asked which hospital Dad was in. When I said ‘LOROS’, he looked confused.
‘It’s a hospice,’ I explained, then I suddenly saw his face drop. I hadn’t expected him to know what a hospice was. I quickly added that his dad was there so they could help him with his pain and that they had some very specialist doctors. He looked relieved. He must have thought it meant Shaun only had a few weeks to live.
‘He will come home again, won’t he?’ he asked, full of concern. On this one point, at least, I could reassure him. Dad would be coming home; we just didn’t know when.
During Shaun’s stay at LOROS, I took Lewis and Ashton to visit a couple of times. Shaun was always so pleased to see them, and I think it must have been reassuring for Lewis and Ashton to see where their dad was, and what a nice room he had. The staff were really friendly, bringing them juice and biscuits, but it was always sad when it was time to leave. Ashton would often cry, while Lewis would put on a brave face, but I wouldn’t be able to get two words out of him on the drive home.
While Shaun was in the hospice, my days were manic. I would get up around 5 a.m. every day to clean Shaun’s house and put some washing on, then get the kids up and get them their breakfast, make sure they were washed and dressed in a clean school uniform and make packed lunches for the day. At 7.15 a.m., I would leave the house to take Ashton off to the childminder’s, leaving Lewis behind to walk to the local high school. With Millie and Anni-Mae in the car, we would then drive the eleven or twelve miles to my house in Anstey, drop Anni-Mae at the walking bus to walk to school, ensure Millie had everything she needed for the day and see her off. Marco was now 18 and could sort himself out for work. After all that, I would then dash off to work myself. I usually finished around 1 p.m., so I would go straight to LOROS and spend an hour or so with Shaun, then back to my house to clean and wash before collecting Anni-Mae from school. Then I would grab a bit of shopping on my way back to Shaun’s house, collecting Ashton from the childminder’s en route, cook dinner, and help the kids with their homework before settling them down so that Shaun’s dad could watch them while I went back to LOROS to see Shaun. After that it was back to Shaun’s to do more chores, like ironing and washing. Eventually I’d fall into bed myself and start all over again the next day. But I wouldn’t have had it any other way. I had promised Gina that I would look after her three boys and that was exactly what I was doing.
Although Shaun and I did our best to stay positive, we both knew that things were not looking good for him. We weren’t stupid. One evening, when he was home from the hospice, we sat having a cuppa looking through some paperwork when Shaun simply said, ‘Did you mean what you said?’
I looked up
from the papers to find him looking straight at me. I knew what he was asking. He wanted me to look after the two remaining treasures in his life, his boys, when he was gone. I nodded, unable to speak for a moment because of the huge lump in my throat, but eventually I managed to say, ‘Of course, I would be honoured.’
He went on, as though to make sure I understood. ‘They’re going to need so much attention,’ he said. ‘They have been through so much in their short lives.’
‘I know,’ I reassured him. ‘I will love them as my own. I already do.’
Shaun took my hand in his. ‘Promise me that you will never let them forget how much Gina and I loved them.’
Tears were rolling down my cheeks. ‘I promise,’ was all I could manage to say.
• • •
Shaun and I spoke a great deal over the next couple of days about me looking after the boys when he had gone. We agreed that I would only have the boys if Lewis, Marco, Millie, Ashton and Anni-Mae were all in agreement. It was hard to discuss the plans with Anni-Mae and Ashton as they were so little, and we were worried about how Ashton would cope. He had already been through so much in his little life, how could we tell him we were planning what would happen when his dad died too? He knew Shaun was ill, but he hadn’t been told that Daddy was going to die. I had similar concerns about Anni-Mae and what she would be able to understand so, in the end, we decided to just ask them how they would feel about living together all the time. They both said ‘yes’ immediately and started jabbering away ten to the dozen, planning all the adventures they were going to have.
Shaun spoke to Lewis alone. I can’t imagine how difficult that conversation must have been for both of them. He didn’t tell me exactly what was said, but he reported the outcome – Lewis had said if he couldn’t have his mum or dad, then he wanted me. I can’t put into words how touched I was by that.
I sat down with Marco and Millie together, to ask them how they felt. I was incredibly proud of their reaction. A short way through my opening gambit, Marco said, ‘Mum, before you go any further, you should have Lewis and Ashton.’ Tears formed in my eyes as he continued, ‘Lewis and Ashton are already like my brothers. I always expected that you would have them. It’s what Auntie Gina would have wanted.’
Millie chipped in. ‘They are so used to you being around,’ she said. ‘They know you love them and they are really going to need you.’
How did my two babies grow up so quick? So unselfish and loving. I couldn’t have been prouder of the young man and lady they had become. They were willing to share me, their mum, with two more children and hadn’t even needed to think about it. Their lives were going to change in so many ways but instead of putting themselves first, they were thinking of Gina and Shaun, Lewis and Ashton.
Shaun was relieved when I told him. We then spoke to them all together, agreeing that I would permanently move into Gina and Shaun’s home. This was a really hard decision for me. I knew that Lewis and Ashton were going to be hurting beyond belief, and that being in their home with their memories all around them may be comforting in some ways, and certainly preferable to taking them away from their home and moving them into mine. On the other hand it meant that I would be uprooting Anni-Mae and Millie away from their home and their big brother, who wanted to stay at our house in Anstey. I understood that because his friends and his life were all there, but I still felt like I was abandoning him.
Typical Marco, he scolded me for my concerns. ‘Mum, I’m 18 now and hopefully I will be a lot older before anything happens, so just do as you’re told,’ he insisted as he placed an arm around me. ‘Anyway, someone has to look after our house till Lewis and Ashton are all grown up.’
I couldn’t help but smile at that – Marco was no domestic god!
We had already decided that I would not sell my house, not just because my house is my children’s future, but also because Shaun and Gina’s house would eventually belong to Lewis and Ashton, so one day I will move back to Anstey. In the meantime, Marco would look after the house and contribute towards the bills, and he promised that he would visit often, even if it was just to drop off his washing!
Millie was at college studying for a diploma in animal management, as she had dreamed of being a vet since she was six. Luckily she could continue to go there while living in Shepshed, but I still felt guilty that I would be taking her away from her friends. Like her brother, she chastised me.
‘I’m big enough to catch a bus when I want to,’ she said. ‘Just don’t complain if I ask you for a lift!’
I hugged her tight. ‘Thank you,’ I whispered into her ear.
‘Anyway, I could always stay with Marco the odd night if I want to,’ she added.
Marco and I just looked at each other, raising our eyebrows.
From that day on, I cared for the boys the majority of the time. The chemotherapy continued with twenty-one days between each dose, and it got to the stage where Shaun was in bed for about fourteen of those days, too unwell to get up and go downstairs, let alone trying to do any normal activities. On a good day, I wouldn’t need to go over, or I might pop over and make a lasagne for him to heat up later. But most days he couldn’t even lift his head off the pillow. I would have to cradle his head and lift it to a glass of water to try to get him to take the array of medication that he was still on daily and I would need to be there to care for him.
But although Shaun was suffering greatly physically, his mind was still planning his boys’ futures. Within three weeks of Shaun asking me to have the boys, and us speaking to the children, he decided he needed to have an extension built to make the house big enough for us all. He contacted a builder, whom he knew from the village, and he pulled out all the stops to help. The builder shuffled his jobs around, took on extra labour and then suggested a really good architect, with whom he was used to working.
The architect knew the family background and understood why Shaun wanted to get the building done immediately, so he pushed and pushed to get planning permission and it was granted really quickly. The original plan was to go from three bedrooms to five, so that each of the kids – barring Marco who was staying in Anstey – would have a bedroom. But Millie said, ‘Mum, in two years’ time I’m going to university. You don’t need to have a room for me.’ She decided she would share with Anni-Mae when she came home and Shaun altered the plans so that Lewis’s room was massive, but could be divided into two rooms if Millie ever wanted to move in permanently.
Building work started in March and was completed in double quick time. The extension meant that Lewis and Ashton would not have to share again – as they did at the moment when I stayed over – unless they wanted to, which was a good thing because there is a big age gap between them. They were all very excited at choosing their own decor. Shaun even managed to complete most of the decorating himself, with a helping hand from me along the way. It was tough for him, and he could only manage the painting and papering on his better days, but he was determined to see the project through, and desperately wanted to make sure that we were all comfortable in the house when he was no longer there with us. Anni-Mae thought she was really special because she now had three bedrooms – one at our old house, one at ‘Uncle Shaun’s’ and one at Daddy’s.
In May, after much consideration and talking with Shaun, I decided to take some extended leave from work. Shaun really needed a full-time carer when he was at his worst and he needed frequent injections of strong painkillers. But he was just 39 years old and didn’t want to have strangers coming in to tend to his every need. Besides which the boys also needed to be cared for when their dad was too ill and the constant rushing around was beginning to take its toll on me. We decided it would be better for everyone if I didn’t have to work on top of everything else. My employers were incredibly understanding. They had seen that some days I was struggling and they knew that I was increasingly having to do more for Shaun and the boys, as well as look after my own children.
The pain Shaun was in fluctuat
ed daily and he went back into LOROS numerous times so they could try different drugs and different procedures. Some helped a little and some didn’t at all, others would make him hallucinate, which was scary for me to watch but must have been really frightening for Shaun. He was really struggling with the constant battle against this awful disease.
It seemed inevitable that, eventually, something would have to give. After four doses of chemotherapy out of the scheduled six, he turned to me one evening and said, ‘I’m sorry.’
‘What for?’ I asked.
‘I can’t do this any more,’ he admitted. ‘The chemotherapy. I’ve had enough.’
My head was nodding but I couldn’t get my brain around what he was saying. I must have looked like a nodding dog.
‘You can’t give up,’ I said at last. ‘That’s not you.’ My voice quivered as I said the words.
‘I would rather have three months and be able to enjoy the time I have left, than six months constantly in bed, too poorly to even sit and have a meal with you all,’ he insisted.
Although it was hard to take what he was saying, I understood his reasons for wanting to stop and, as always, I admired his bravery.
By now I was living at Shaun’s on an almost permanent basis as he was spending more and more time in LOROS and was too ill to move when he was home. On his good days – which were still worse than most people’s good days – he could get out of bed, he could look after the boys and even have a tickle fight. He would sit and have a meal with us or pop into town or to the cinema while the boys were at school. In fact, whenever possible, Shaun would get on his motocross bike and go out to race. The doctors told him not to, but Shaun would say, ‘Take that away from me and I might as well die now.’ Admittedly, he wasn’t of the standard that he had been a year ago, but he loved it, so who were we to judge what made a dying man happy?
After Shaun had decided he wanted to cease the chemotherapy treatment we went to the hospital to speak to his consultant. She understood completely and felt that it probably wouldn’t prolong his life that much anyway, given how aggressive the cancer had become. At least coming off the programme would solve the constant nausea and vomiting, and that would just leave the pain to try to get on top of.
