Tuesday 23 February 2021
Maggie's Yorkshire
Jane and Tim were supported by Maggie's in Yorkshire when Tim's treatment was stopped due to coronavirus. We were able to support them both through the challenges they faced, with diagnosis, a pandemic, changing treatment and loss.
Tim started thinking something was wrong last autumn. He felt like food was getting stuck on the way to his stomach.
The doctors didn’t think it was anything to worry about but he was sent for an endoscopy just to check. Tim seemed fine after the endoscopy and I’ve actually got a picture of him smiling while we waited for the results.
The endoscopy revealed he had Barrett’s oesophagus and a lump that was 2cm - I burst into tears. I just needed to know if it was cancer but they said they’d have to wait for the biopsy results.
All the indications from the doctor were that it was cancer, everything we heard suggested it would be, but we had to wait. It was an awful time. The diagnosis came ten days later. We were told it was an advanced stage four oesophageal cancer. They said surgery was not an option and that his chemotherapy would start around Christmas.
I’m not someone who seeks out help.
My mum has had cancer for eight and a half years but I’ve never felt I needed help or support.
However, when Tim was diagnosed, everyone said we should go to the Maggie's Yorkshire centre. It was more Tim that wanted to go – I don’t like visiting new places and didn’t think it would help. But it did.
We walked in and met the Centre Head, Amanda. She was really lovely , she showed us into a room and told us what they did.
From then on, whenever we were at the hospital, we would say to each other ‘Shall we go to Maggie’s for a cuppa?’ They were just really friendly.
Amanda became our go-to person. I think Tim found it really helpful to talk about his cancer as it helped him to process things. We would go in and just have a little chat and it was always Amanda who we saw. She was the one who we made a bee-line for as we’d got to know her.
We then found out that Maggie’s had Benefits Advisors , so we went to see her and she discussed everything with us.
They went above and beyond as well, finding additional support for Tim during his treatment. Never in a million years did we think he’d qualify for certain components but he did and that was a real boost financially.
Just before treatment started, I managed to surprise Tim with a trip to the Ice Hotel. I had been planning it for months – long before Tim had had any symptoms. At the bottom of the box of presents of new jumpers and winter clothes were the tickets.
He was completely surprised. Part of him was also upset because he thought I had booked it thinking he was going to die. When he found out that it had always been planned, he was thrilled because it was a genuine treat for us both.
Tim was planned for six cycles of three weeks, due to end on 10 May. The first chemo was just before Christmas on the 20 Dec.
When the drinks trolley came around the ward they didn’t just have tea and coffee, we had a festive G and T instead. We really tried to stay positive and make the best of the situation we had found ourselves in.
We also got to spend Christmas with all our family which was just magical. My mum hadn’t been very well, and as Tim had just started his chemotherapy a few days before Christmas, we weren’t sure we would be able to.
Tim’s side effects were manageable, the main one making him feel like a 90-year-old (his words). This meant he was very tired and his body ached.
We took the decision to drive the 200 miles so that we could have a family Christmas together. No-one ever knows what’s around the corner but even with the recent diagnosis, we never thought it would be Tim’s last Christmas. It makes it all the more special that we were all together for it.
Tim was the ultimate uncle; he loved rolling around on the floor, playing with the nieces and nephews.
Even though he wasn’t his usual self that Christmas, he did so well and even managed to come on a family ice-skating trip.
Our nephew, who was only seven, was really happy pushing his uncle Tim around on the ice. It meant so much to have us all together.
Tim was back for round two of chemotherapy in January 2020.
With such a difficult diagnosis, we knew it was bad, but we were both in the general sense very positive as he was young, fit and healthy.
The consultant said : "You’d know if the chemo was working". And we did.
The midway scan in February suggested he was doing much better, with a near-complete response and with the original tumour now barely visible.
We were told to expect that Tim could live for more than six months. Then he had one more round of chemotherapy and coronavirus hit and his treatment was just stopped.
Tim desperately wanted it to continue, as he could honestly feel it was working as he had no issues with food getting stuck. So he was devastated when it didn’t continue.
We didn’t really know what was going to happen or when things could resume.
We were at home, shielding and isolating.
After just over two weeks, Tim started to feel deep pain in his back, and we knew he needed to resume treatment.
However, it took another three weeks to restart the chemotherapy. By the time it arrived, it felt like an age. I guess, deep down, I knew things weren’t good but I tried not to think about it. Tim was a worrier, so he was worried, but I’d always try and convince him otherwise.
One morning we rang the hospital as Tim’s pain was getting a lot worse. I remember that morning so well, laying in bed with him, cuddling him.
I actually took a picture of us, but he looks really unwell in it. We used to love laying in bed cuddling together.
We arranged for Tim to go into hospital, but took our time getting ready to leave. I don’t think either of us knew it would be his last time at home.
I dropped him off alone at the hospital entrance, as I was unable to enter the hospital with him due to coronavirus.
It’s hideous to be separated from the person you love when they’re in hospital.
Just a cuddle makes things better. It makes it better for him, and it makes it better for me. And we couldn’t do that. We spent most of our time on FaceTime to each other.
One morning, he fell asleep on a call, and I just watched him sleeping for an hour.
We kept campaigning for Tim to get his chemotherapy. At one point, the man next to Tim in the hospital turned to him and said, “Bloody hell, your wife is a fighter isn’t she?”
We fought, and we managed to get Tim part of his chemotherapy treatment.
But when Tim’s feeding became problematic, we ran into difficulty. There were problems with the stents he had fitted, and one night Tim was in such pain that he thought he was going to die. And he wrote me a letter to say goodbye.
The next morning he told me about it and said it would be on his iPad for me, just in case he died. He ended up reading it to me.
In late March, when coronavirus hit and stopped Tim’s treatment, we had been told they expected Tim to live for more than six months.
So in early June, when the consultant rang me from Tim’s bedside, and told us that Tim he was dying, we were in shock.
Tim was jaundiced due to complications with the stent. Our choice was between liver failure or attempting to correct the liver failure with another stent and then dying of cancer.
Either way we were looking at four weeks max. The consultant heavily suggested that fitting another stent was not in Tim’s best interests.
Tim also didn’t want another procedure that could potentially cause yet more problems as so many procedures had already gone wrong. So the choice was made.
We had to decide if Tim remained in hospital or came home – a hospice was not an option as they would only allow me to see Tim for an hour a day due to coronavirus.
Everything was set for him to come home but he had a really bad day and even the consultant said they didn’t think Tim would manage the journey.
It had scared us both and Tim said that he didn’t want me to have to deal with him by myself at home in that situation, so the decision was made for him to stay in hospital.
That’s Tim all over, always thinking of others before himself. At this point they allowed me to stay with Tim which I was very grateful for. All he wanted was to be with me and that’s all I wanted too.
He died two weeks after, Tuesday 23 June 2020, aged 42.
Tim didn’t like hospitals so being able to call into the Maggie’s centre after each hospital appointment, treatment or blood test was so helpful for him.
To have a space where he could sit and process what he was going through or talk it through with someone was a massive benefit to him. The Maggie’s centre is a very beautiful space and with Tim loving architecture it just felt a bit like a second home – a much nicer second home than the hospital was becoming.
The first time Tim’s treatment got delayed he left the hospital feeling very stressed, disappointed and anxious about it all so it was only natural for us to go to the Maggie’s centre to see if they could help.
We spoke to Amanda and told her what had happened and asked if Emma, the Clinical Psychologist, was able to run a relaxation session with us.
Luckily, she had time to do a session with us, even though she wasn’t scheduled to do one until the afternoon.
I cannot thank them enough for doing this as it really helped Tim and he came away from the centre so much more relaxed and accepting of the delay in treatment.
In lockdown, he was able to continue to follow the relaxation practices he had learnt through the online resources, which helped as his pain got worse. I remember hearing it many nights when he was struggling to sleep.
After Tim had died, I wanted to set up a tribute page and had decided to support the Maggie’s centre as part of it.
The decision to support Maggie’s just seemed like the right thing to do as they had helped us so much.
I contacted the centre and they helped me set up the page, advising on different ways I could do this.
I chose one where people could upload photos and memories of Tim and I have found a lot of comfort in what people have written.
I just wish Tim could have seen what people said about him and how much he was loved. I also think he would have liked that we raised money for the centre – it’s not something we discussed before he died.
Since Tim died, Maggie’s have continued to support me.
My first call to the centre I just talked to Amanda and she listened. I’m not someone who likes to talk about my thoughts and feelings but I felt safe chatting to Amanda. It helped me to process what I’d been through and reassure me that all the things that I was feeling were completely normal.
I remember saying to Amanda that 'I would never have come into the centre had it not been for Tim.' The only person that I would open up to would have been Tim.
For me to have gone to the centre by myself just after he died was quite a brave thing to do and I’m sure Tim would have been very proud of me.
I was glad I did as I came away feeling much better, which is why I went back a second time when I ended up back at hospital collecting some of Tim belongings.
This time Amanda wasn’t there. Helen introduced herself and asked if she could help. I just didn’t know what to do, stay, leave, what was best for me? I just answered her saying I don’t know. She then offered me a brew which I accepted. She was so lovely and asked if I wanted to talk.
Again I didn’t know so she said that she would sit at the kitchen table and I was welcome to join her or sit somewhere quietly by myself. I decided to join her.
She asked if I’d just been for treatment or an appointment, at which point I just burst into tears and told her the whole story about Tim.
I must have talked to her for over two hours and never did she rush me or make me feel like I was wasting her time. I came away feeling so much better.
Now I just keeping bobbing into the centre when I feel I need to offload.
It’s nice to be greeted with a friendly face and a cup of tea, have a chat and possibly even a cry, but I always come away feeling much better about things. In fact, I think I’m probably due another visit soon.
A Maggie’s tribute page is a wonderful way to remember someone you loved by raising money in their name supporting Maggie’s work. Find out how to set up a tribute page.
If you, your family or friends need support during this time, please call us on 0300 123 180, email enquiries@maggies.org or book a time to visit us.
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