I’m Kelly and this is my story and the story of my Mum, Wendy Hawke.
I initially took Mum to Lakes Care and then on to A & E with a pain in her side in September 2016. She had not long had her 60th birthday.
The doctor at Lakes Care said Mum’s spleen was the largest she had ever felt. When the doctor left the room and Mum asked me what your spleen does, my immediate response was “the last person I knew with an enlarged spleen, it didn’t go so well”. My partner had died of lymphoma, and had had an enlarged spleen, so for me it was alarm bells. I apologised to Mum later on for my lack of sensitivity – at the same time at least it was out in the open, at least she knew what was going through my mind.
By 2pm that day, we had been told she had a form of blood cancer. Initially they thought it was a different type of blood cancer, a ‘friendlier’ type, Chronic Lymphocytic Leukaemia (CLL), and the registrar told us “I would rather have that than diabetes”.
With my partner, Nick, we believed he would be fine and he wasn’t. This time, I was going to see it coming; I was determined to know all the facts and remain realistic – a kind of self-protection. Mum was the opposite – she refused to believe it. It was a formula that proved to work quite well for us.
By mid-October Mum had had a bone marrow test and it had been confirmed that she had stage four Mantle Cell Lymphoma, an aggressive non-Hodgkin Lymphoma, not CLL as originally hoped, and begun treatment at Waikato Hospital.
After the initial six rounds of high dose chemotherapy, we went on an 18 km walk in the Whakarewarewa Forest, right up to Tuhoto Ariki, a trail at the top of the forest – Mum loved it in there. Getting out in nature was her thing. The next part of her treatment plan was a stem cell transplant – due to the aggressive chemotherapy she went from walking 18 km to not being able to walk from her hospital bed to the ensuite – within the space of two weeks.
When she was eventually allowed to leave the isolation room she was in (to protect her from the risk of infection) and managed to walk with some visitors to the stairs down the hallway, it was like party time!
In September 2017, Mum moved into her own place. From the time of her diagnosis she had been staying with my brother, Tony or in hospital. Clinically, she was in remission. She went on a holiday to the South Island and in April 2018 she walked around Lake Waikaremoana with two close friends. I am so happy she got to do that. I’m forever grateful to her friends.
But she had started having symptoms again and the Haematologist said she was worried the lymphoma may have returned. We were waiting on a CT and MRI. On Mother’s Day, I was at her house but popped out to get something. By the time I got back, we had to take her to hospital. As well as her existing symptom of pain in her shins, she had become confused. Something was wrong with her brain – she couldn’t find some of the letters on her phone when she was trying to text my brother. By the time we got to A&E she couldn’t remember her DOB or her NHI number – which she always rattled off.
They assessed that she wasn’t in immediate danger and we had the option to admit her to hospital or bring her home while we waited for the CT and MRI. Never a big fan of spending any more time in hospital than she had to, she came home to my house which became her new home. The confusion would come and go but the symptoms all seemed to be getting worse. I was terrified.
We couldn’t keep waiting for the scans. She was admitted back to Waikato hospital. The lymphoma was back. And really bad news, it was in the cerebral spinal fluid which isn’t usual for that type of lymphoma. It was terminal. They could provide palliative chemo – it was late Friday afternoon when they came and told us. The haematologist stayed late to administer the first dose of chemotherapy into Mum’s cerebral spinal fluid via lumbar puncture – the fact the haematologist stayed late and performed the procedure himself rather than delegating to a registrar was one of those little gestures that meant the world.
We pressed the haematology team for some idea of how long we might have together. Maybe a week to 2 months if you’re lucky was the reply. They couldn’t have known it at the time but it was 2 months to the day.
We also asked ‘can we take her out?’ They said there is a chance she might fall unconscious at any time but if symptoms are going to come on they will do so whether you are in hospital or out doing something you want to do. Ultimately, it won’t change the outcome. We really appreciated the honesty and we chose to go out and about when we could between treatments – a trip to Raglan; to visit her favourite Hamilton café, Gather Foodhouse for coffee and yummy kai; to walk around the lake – to make the most of the time we did have.
Family and friends came to visit from near and far. I printed close to 100 photos off my phone to Blutack to the walls of her hospital room – if Mum was potentially going to spend her last bit of time there, I wanted her to at least be surrounded by the views she loved and happy memories. There was an incredible unintended consequence from that. The quality of the conversations she had was higher. Each of the pictures held a memory. The haematology team, the nurses, the cleaners, health care assistants, the people bringing in the meals would all stop and have a chat – the photos became a focal point.
Mum responded well to the chemo and was no longer having the periods of confusion. She was back to herself, albeit a weaker version, and was able to come home (to my home) although we still had to return to Waikato twice a week for more palliative chemotherapy. We were feeling positive, there was a chance of a new drug that could take her life expectancy to two years; Mum seemed to be doing really well and the haematologist was happy with her progress. Again we were waiting for an MRI to confirm that. We were walking in the forest every day – I remember giving her a hard time saying she walked like a toddler because her she’d lost a lot of control of her legs, which was attributed to losing muscle due to the steroids she was on. In order to ensure she didn’t fall over when stopping she would line herself up with a tree! But it wasn’t going to stop her getting out there!
Right from the time they told us it was terminal, it was important to me to know that if Mum was going to die, that she was okay with dying. I couldn’t bear to watch her die being afraid. We were able to have a conversation around dying, what she believed about life and death and I think in articulating that she became comfortable with her beliefs. All the way through her treatment she had felt that she’d been supported in ways she couldn’t explain. I’m really thankful we had that conversation. Death is something we don’t often talk about in our society but it feels really important that we do. From the time we had that conversation Mum was much more at peace.
Mum was bloody independent. I have suffered from brain fatigue due to mild-traumatic brain injury since a concussion a few years back and Mum had helped me a lot despite me never wanting to accept that I needed her help – she would say “I know you don’t want me to, but you need to let me help you”. I had to laugh one day when the roles were reversed and say “do you think maybe this is where I got it from Mum?”
I asked Mum’s GP for a referral to Hospice – I had heard of them already and we had spoken about it briefly earlier on, before it was needed. Mum was pretty apprehensive about having to need Hospice – we both were. Not wanting to admit we needed the help and also because we thought she was going to improve, but once we had the referral, the way they were with her, she just relaxed instantly. Mum would happily let Hospice help her. You don’t know what to ask sometimes, but the nurses were amazing – you didn’t need to ask.
The thing to remember with Hospice is it doesn’t mean it’s the end. It means getting support and you can put it on hold if you don’t need it just yet. One thing I would do differently is get Hospice on board sooner – have them on standby. Don’t wait until you’re about to break. Don’t be afraid. It doesn’t mean you’re admitting it’s the end. Hospice had support for the whole family – conversations, checking I was okay, checking Tony was okay.
We got a walker – that helped a lot, gave Mum a bit more independence for a bit longer. And then a couple of days later Mum progressed to needing a wheelchair for one day before being restricted to the bed for her last two days. She really went downhill very quickly at the end.
Two days before Mum died, on the Monday afternoon, we took her for a ‘walk’ in the forest (with Tony pushing her in the wheelchair). She said “I’m going to Strava this as I think it might be my last walk in the forest”. I told her I thought that was cheating seeing as she wasn’t actually walking, but I’d let her off this time! That morning we’d made the decision not to take Mum back to Waikato. It was the first time any of us had realised that we might be near the end. Until then, we’d still been thinking she was going to get her strength back and we’d have another couple of years thanks to this new drug. When we talked about how Mum might want her last days to be (although we were still thinking we might have weeks, we still had absolutely no idea how close we were to the end) we talked about the idea of a “free range” death – because I couldn’t think of a better term to describe how we wanted it to be, although I’m sure there must be one! Mum didn’t want to die in hospital and nor did my brother or I want her to, unless it was her wish. This is something I’ve felt strongly about for a long time. I vividly remember, years ago, when my partner Nick was sick and in hospital, before his lymphoma diagnosis, saying to him “If I’m ever in hospital and I’m going to die, please get me out of there – take me out to the carpark if you have to!” So it meant a great deal to me to be able to have Mum here in my home until the very end, thanks to the support of Hospice.
On the Tuesday all of Mum’s family came and so many of her friends were able to make it to say goodbye to her. People are amazing the way they pull together at times like that. The people who turn up to show they care. We sat beside her bed and chatted with Mum, lots of people came through to say hi, many many cups of tea were made. My little house was chocca.
On her last morning, the Wednesday, Tony and I and Mum’s brother, our Uncle Philip were there. I opened up the curtains in her room, told Mum there was a beautiful sunrise out there for her. By this stage she was no longer responding, hadn’t been since Tuesday afternoon. Tony and I held her hand and promised her we’d look after each other, told her how proud we were of her, how much we loved her and that she could let go whenever she was ready. When she took her last breath, it was really beautiful in a way I had no idea death could be.
The day Mum died, there were two kereru in the tree outside her bedroom window as well as numerous tui and a monarch butterfly hanging around. We felt like it was a sign. I made the cheeky comment to my aunty “Well that’s all very nice but I’d be really impressed if she could organise a kingfisher (kotare)!” Later on that day we saw one! The only other time I’ve seen one here was on Nick’s birthday one year. When I told Tony what I’d said and pointed out the kotare he said “I bet she can’t arrange a moa.” Then what was there? The sound of a lawn mower in the background. Exactly Mum’s sense of humour.
Without Hospice, we wouldn’t have been able to have it the way it was. Being at home was so important to Mum and to Tony and I. Hospice is the only thing that allowed that. Allowed Mum and Tony and I to be surrounded by the love and support of friends and family. And meant Mum had the best quality of life possible right to the very end. It really was beautiful. We are so very grateful to Hospice.