I\u2019m Kelly and this is my story and the story of my Mum,\nWendy Hawke.<\/p>\n\n\n\n
I initially took Mum to Lakes Care and then on to A & E\nwith a pain in her side in September 2016. She had not long had her 60th<\/sup>\nbirthday. <\/p>\n\n\n\n The doctor at Lakes Care said Mum\u2019s spleen was the largest\nshe had ever felt. When the doctor left the room and Mum asked me what your\nspleen does, my immediate response was \u201cthe last person I knew with an enlarged\nspleen, it didn\u2019t go so well\u201d. My partner had died of lymphoma, and had had an\nenlarged spleen, so for me it was alarm bells. I apologised to Mum later on for\nmy lack of sensitivity \u2013 at the same time at least it was out in the open, at\nleast she knew what was going through my mind.<\/p>\n\n\n\n By 2pm that day, we had been told she had a form of blood\ncancer. Initially they thought it was a different type of blood cancer, a\n\u2018friendlier\u2019 type, Chronic Lymphocytic Leukaemia (CLL), and the registrar told\nus \u201cI would rather have that than diabetes\u201d. <\/p>\n\n\n\n With my partner, Nick, we believed he would be fine and he\nwasn\u2019t. This time, I was going to see it coming; I was determined to know all\nthe facts and remain realistic \u2013 a kind of self-protection. Mum was the\nopposite \u2013 she refused to believe it. It was a formula that proved to work\nquite well for us.<\/p>\n\n\n\n By mid-October Mum had had a bone marrow test and it had\nbeen confirmed that she had stage four Mantle Cell Lymphoma, an aggressive\nnon-Hodgkin Lymphoma, not CLL as originally hoped, and begun treatment at\nWaikato Hospital.<\/p>\n\n\n\n After the initial six rounds of high dose chemotherapy, we\nwent on an 18 km walk in the Whakarewarewa Forest, right up to Tuhoto Ariki, a\ntrail at the top of the forest \u2013 Mum loved it in there. Getting out in nature\nwas her thing. The next part of her treatment plan was a stem cell transplant \u2013\ndue to the aggressive chemotherapy she went\nfrom walking 18 km to not being able to walk from her hospital bed to the\nensuite \u2013 within the space of two weeks. <\/p>\n\n\n\n When she was eventually allowed to leave the isolation room\nshe was in (to protect her from the risk of infection) and managed to walk with\nsome visitors to the stairs down the hallway, it was like party time!<\/p>\n\n\n\n In September 2017, Mum moved into her own place. From the\ntime of her diagnosis she had been staying with my brother, Tony or in\nhospital. Clinically, she was in remission. She went on a holiday to the South\nIsland and in April 2018 she walked around Lake Waikaremoana with two close\nfriends. I am so happy she got to do that. I\u2019m forever grateful to her friends.<\/p>\n\n\n\n But she had started having symptoms again and the\nHaematologist said she was worried the lymphoma may have returned. We were\nwaiting on a CT and MRI. On Mother\u2019s Day, I was at her house but popped out to\nget something. By the time I got back, we had to take her to hospital. As well\nas her existing symptom of pain in her shins, she had become confused. Something\nwas wrong with her brain \u2013 she couldn\u2019t find some of the letters on her phone\nwhen she was trying to text my brother. By the time we got to A&E she couldn\u2019t\nremember her DOB or her NHI number \u2013 which she always rattled off.<\/p>\n\n\n\n They assessed that she wasn\u2019t in immediate danger and we had\nthe option to admit her to hospital or bring her home while we waited for the\nCT and MRI. Never a big fan of spending any more time in hospital than she had\nto, she came home to my house which became her new home. The confusion would\ncome and go but the symptoms all seemed to be getting worse. I was\nterrified. <\/p>\n\n\n\n We couldn\u2019t keep waiting for the scans. She was admitted\nback to Waikato hospital. The lymphoma was back. And really bad news, it was in\nthe cerebral spinal fluid which isn\u2019t usual for that type of lymphoma. It was\nterminal. They could provide palliative chemo \u2013 it was late Friday afternoon\nwhen they came and told us. The haematologist stayed late to administer the\nfirst dose of chemotherapy into Mum\u2019s cerebral spinal fluid via lumbar puncture\n\u2013 the fact the haematologist stayed late and performed the procedure himself\nrather than delegating to a registrar was one of those little gestures that\nmeant the world.<\/p>\n\n\n\n We pressed the haematology team for some idea of how long we\nmight have together. Maybe a week to 2 months if you\u2019re lucky was the reply.\nThey couldn\u2019t have known it at the time but it was 2 months to the day.<\/p>\n\n\n\n We also asked \u2018can we take her out?\u2019 They said there is a\nchance she might fall unconscious at any time but if symptoms are going to come\non they will do so whether you are in hospital or out doing something you want\nto do. Ultimately, it won\u2019t change the outcome. We really appreciated the\nhonesty and we chose to go out and about when we could between treatments \u2013 a\ntrip to Raglan; to visit her favourite Hamilton caf\u00e9, Gather Foodhouse for\ncoffee and yummy kai; to walk around the lake \u2013 to make the most of the time we\ndid have.<\/p>\n\n\n\n Family and friends came to visit from near and far. I\nprinted close to 100 photos off my phone to Blutack to the walls of her\nhospital room \u2013 if Mum was potentially going to spend her last bit of time\nthere, I wanted her to at least be surrounded by the views she loved and happy\nmemories. There was an incredible unintended consequence from that. The quality\nof the conversations she had was higher. Each of the pictures held a memory.\nThe haematology team, the nurses, the cleaners, health care assistants, the people\nbringing in the meals would all stop and have a chat \u2013 the photos became a\nfocal point.<\/p>\n\n\n\n Mum responded well to the chemo and was no longer having the\nperiods of confusion. She was back to herself, albeit a weaker version, and was\nable to come home (to my home) although we still had to return to Waikato twice\na week for more palliative chemotherapy. We were feeling positive, there was a\nchance of a new drug that could take her life expectancy to two years; Mum seemed\nto be doing really well and the haematologist was happy with her progress.\nAgain we were waiting for an MRI to confirm that. We were walking in the forest\nevery day \u2013 I remember giving her a hard time saying she walked like a toddler\nbecause her she\u2019d lost a lot of control of her legs, which was attributed to\nlosing muscle due to the steroids she was on. In order to ensure she didn\u2019t\nfall over when stopping she would line herself up with a tree! But it wasn\u2019t\ngoing to stop her getting out there!<\/p>\n\n\n\n Right from the time they told us it was terminal, it was\nimportant to me to know that if Mum was going to die, that she was okay with\ndying. I couldn’t bear to watch her die being afraid. We were able to have a\nconversation around dying, what she believed about life and death and I think\nin articulating that she became comfortable with her beliefs. All the way\nthrough her treatment she had felt that she\u2019d been supported in ways she\ncouldn\u2019t explain. I\u2019m really thankful we had that conversation. Death is\nsomething we don\u2019t often talk about in our society but it feels really\nimportant that we do. From the time we had that conversation Mum was much more\nat peace.<\/p>\n\n\n\n Mum was bloody independent. I have suffered from brain\nfatigue due to mild-traumatic brain injury since a concussion a few years back\nand Mum had helped me a lot despite me never wanting to accept that I needed her\nhelp \u2013 she would say \u201cI know you don\u2019t want me to, but you need to let me help\nyou\u201d. I had to laugh one day when the roles were reversed and say \u201cdo you think\nmaybe this is where I got it from Mum?\u201d<\/p>\n\n\n\n I asked Mum\u2019s GP for a referral to Hospice \u2013 I had heard of\nthem already and we had spoken about it briefly earlier on, before it was\nneeded. Mum was pretty apprehensive about having to need Hospice – we both were.\nNot wanting to admit we needed the help and also because we thought she was\ngoing to improve, but once we had the referral, the way they were with her, she\njust relaxed instantly. Mum would happily let Hospice help her. You don\u2019t know\nwhat to ask sometimes, but the nurses were amazing \u2013 you didn\u2019t need to ask. <\/p>\n\n\n\n The thing to remember with Hospice is it doesn\u2019t mean it\u2019s\nthe end. It means getting support and you can put it on hold if you don\u2019t need\nit just yet. One thing I would do differently is get Hospice on board sooner \u2013\nhave them on standby. Don\u2019t wait until you\u2019re about to break. Don\u2019t be afraid.\nIt doesn\u2019t mean you\u2019re admitting it\u2019s the end. Hospice had support for the\nwhole family \u2013 conversations, checking I was okay, checking Tony was okay. <\/p>\n\n\n\n We got a walker \u2013 that helped a lot, gave Mum a bit more\nindependence for a bit longer. And then a couple of days later Mum progressed\nto needing a wheelchair for one day before being restricted to the bed for her\nlast two days. She really went downhill very quickly at the end. <\/p>\n\n\n\n Two days before Mum died, on the Monday afternoon, we took\nher for a \u2018walk\u2019 in the forest (with Tony pushing her in the wheelchair). She\nsaid \u201cI\u2019m going to Strava this as I think it might be my last walk in the\nforest\u201d. I told her I thought that was cheating seeing as she wasn\u2019t actually\nwalking, but I\u2019d let her off this time! That morning we\u2019d made the decision not\nto take Mum back to Waikato. It was the first time any of us had realised that\nwe might be near the end. Until then, we\u2019d still been thinking she was going to\nget her strength back and we\u2019d have another couple of years thanks to this new\ndrug. When we talked about how Mum might want her last days to be (although we\nwere still thinking we might have weeks, we still had absolutely no idea how\nclose we were to the end) we talked about the idea of a \u201cfree range\u201d death \u2013 because\nI couldn\u2019t think of a better term to describe how we wanted it to be, although\nI\u2019m sure there must be one! Mum didn\u2019t want to die in hospital and nor did my\nbrother or I want her to, unless it was her wish. This is something I\u2019ve felt\nstrongly about for a long time. I vividly remember, years ago, when my partner\nNick was sick and in hospital, before his lymphoma diagnosis, saying to him \u201cIf\nI\u2019m ever in hospital and I\u2019m going to die, please get me out of there \u2013 take me\nout to the carpark if you have to!\u201d So it meant a great deal to me to be able\nto have Mum here in my home until the very end, thanks to the support of\nHospice. <\/p>\n\n\n\n On the Tuesday all of Mum\u2019s family came and so many of her\nfriends were able to make it to say goodbye to her. People are amazing the way\nthey pull together at times like that. The people who turn up to show they\ncare. We sat beside her bed and chatted with Mum, lots of people came through\nto say hi, many many cups of tea were made. My little house was chocca.<\/p>\n\n\n\n On her last morning, the Wednesday, Tony and I and Mum\u2019s\nbrother, our Uncle Philip were there. I opened up the curtains in her room,\ntold Mum there was a beautiful sunrise out there for her. By this stage she was\nno longer responding, hadn\u2019t been since Tuesday afternoon. Tony and I held her\nhand and promised her we\u2019d look after each other, told her how proud we were of\nher, how much we loved her and that she could let go whenever she was ready.\nWhen she took her last breath, it was really beautiful in a way I had no idea\ndeath could be.<\/p>\n\n\n\n The day Mum died, there were two kereru in the tree outside\nher bedroom window as well as numerous tui and a monarch butterfly hanging\naround. We felt like it was a sign. I made the cheeky comment to my aunty \u201cWell\nthat\u2019s all very nice but I\u2019d be really impressed if she could organise a\nkingfisher (kotare)!\u201d Later on that day we saw one! The only other time I\u2019ve\nseen one here was on Nick\u2019s birthday one year. When I told Tony what I\u2019d said\nand pointed out the kotare he said \u201cI bet she can\u2019t arrange a moa.\u201d Then what\nwas there? The sound of a lawn mower in the background. Exactly Mum\u2019s sense of\nhumour.<\/p>\n\n\n\n Without Hospice, we wouldn\u2019t 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. <\/p>\n\n\n\n <\/p>\n\n\n\n Wendy passed away on 18th July 2018.<\/p>\n","protected":false},"excerpt":{"rendered":" Without Hospice, we wouldn\u2019t 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.<\/p>\n","protected":false},"featured_media":1623,"template":"","acf":[],"_links":{"self":[{"href":"https:\/\/rotoruahospice.co.nz\/wp-json\/wp\/v2\/stories\/1622"}],"collection":[{"href":"https:\/\/rotoruahospice.co.nz\/wp-json\/wp\/v2\/stories"}],"about":[{"href":"https:\/\/rotoruahospice.co.nz\/wp-json\/wp\/v2\/types\/stories"}],"version-history":[{"count":0,"href":"https:\/\/rotoruahospice.co.nz\/wp-json\/wp\/v2\/stories\/1622\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/rotoruahospice.co.nz\/wp-json\/wp\/v2\/media\/1623"}],"wp:attachment":[{"href":"https:\/\/rotoruahospice.co.nz\/wp-json\/wp\/v2\/media?parent=1622"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}