It’s (not) all palliative

The very first post (entitled “no one here gets out alive”) was on the subject of me joining the palliative care program. It was more than two years ago and I was at chemo, talking to them about a few services I felt I needed, mostly counselling, and especially to make sure the kids were doing ok.

The chemo nurse said that it was easier to get these things under one “umbrella”, and I should consider joining palliative care. I totally freaked that they thought I “needed” this so soon, I was still absorbing the shock of my diagnosis. They assured me that it wasn’t like that at all, that yes, when the time came, palliative care were there to facilitate a peaceful death for the patient, but until that point they were absolutely about maximising quality of life. And naturally, the longer you were in the program, the longer you would benefit.

I was terrified, but I did it. And even when they came to do the intake to the program for me, I knew I had made the right decision. They kept asking me what I wanted, what I needed etc, where I had been virtually obsessed with keeping things as good and normal as I could for everyone else. I knew that I could rely on them to put me at the centre of things if needed, even if I didn’t feel able.

Over the two and a bit years I had had bi-weekly visits from the district nurses, really just chats about how I am feeling, how I am coping etc. In the last year or so, that has progressed to occasional call outs to the house for them to administer subcut morphine that I keep at home, if I am in particularly bad pain. This service in itself has been magnificent, as it means that I don’t have to visit an emergency department in the middle of the night, with four kids in tow. They also stepped in on my behalf when an intern doctor told me that I couldn’t take a planned family holiday, for no reason that I could see…I rang them, and they rang the doctor and we were on our way. They will advocate at any time for you to live your LIFE.

Part of the palliative care program is the hospice, of course. I’ve always found it hard to see this as a place that is anything but somewhere you go to die. It’s a building that looms rather large in our life. It is right next to Dakota’s high school, so these days I drive past it every day. It is also the place where Gaz’s ex wife passed away 10 years ago. As he was still very close to her, we were there every up to and including the day she passed away. Because of the terrible memories that it would create for Gaz, I have not yet decided whether I will be there, or at home when my time comes.

So, here I was, a few weeks ago, with my palliative care nurse recommending I go there for an inpatient stay. I was quite sure that I wouldn’t come out, but the state I was in, mentally, and physically, I didn’t know if I really wanted to, so I was very passive, and said yes. The nurse assured me that there was no way I was going in there to die, that 50% of patients go in there to get all their issues sorted out, and then come home much the better for it. I knew it was my only chance for things to change.

The next day I packed a bag and my sister and I set off for the unit. We were both bawling as we drove past the sign to the hospice. It’s just a word, my sister said, we just have to get past that WORD.

As soon as we were inside, it was like a haven. They were all ready for me, and ushered me into a bed in a private room, a nurse at the ready with a syringe of pain medication. The doctors filed past, said they would be in shortly, that they just wanted to get me out of any immediate pain, as how do you have a rational conversation when you are in such a sea of misery. It made sense.

Shortly after, the pain team arrived and all of them gathered around my bed, including my lifesaver, Dr Brian. A very dry Scottish man, I had a bit of trouble working out at first whether he was telling me off or being humourous, I came to like him very very much.

You’ve got to give it to these people, they don’t muck around. Right, the fentanyl patch is helping, but she’s still got pain, let’s whack another one on and double the dose. Tell the nurse she can have breakthrough morphine every hour. Then he suggested starting a syringe driver, which would administer constant low dose morphine. I really did panic then, and said no way…all I could think of was a friend who told us that her doctor was starting syringe drivers, and she passed away only two days later. I really thought those things were only to constantly increase the dose of pain medication until you die. Brian assured me definitely NOT, it was just to keep a constant dose of medication going in so that I wasn’t in pain at all.

I think a lot of us in cancer land martyr ourselves to pain. I know I do. The more I can endure, the more I know I am still in the game. I used to think of decent pain management as “masking” the situation, so I didn’t know what was going on with my body. But the fact of the matter is that nothing was working effectively anyway, it only took them a short time at palliative care to work out that I had absorbtion issues due to having such a short digestive system, and nothing that I had ever taken for pain had done much more than eating a smartie anyway.

I agreed to the syringe drivers (and they were set up immediately – you never wait for ANYTHING in this place), but I said to Brian that I didn’t cope well with anything that came out of my body, tubes, lines, things I had to carry etc. I expected a lecture for being so ungrateful, but he totally understood and said let’s just get you completely pain free and then work out how to keep you that way. He said I was a complicated unit (no kidding), but he was absolutely determined that I wasn’t going to be in pain again. It seemed too good to be true. He said if I stayed there at the hospice until he worked it out, I would be very glad he did.

That night, after a visit from the family, and a very nice meal, I had my first decent nights sleep in probably months. Yes, pain free. I expected to be completely off my face with this amount of medication, but I wasn’t, so that was a relief.

The next morning, Brian was in again. The fentanyl patches were working for pain, but we just couldn’t get them to stick, so as they started to peel away, they lost their effectiveness. We tried another day of sticking them down, but nothing worked, so Brian changed me onto Norspan (morphine) patches, which are made of fabric like a bandaid, and stuck perfectly. Success!

I expected to feel surrounded by death and misery, but the unit is a very peaceful place. Those walking around are in similar places to me, obviously in pain or some sort of symptom trouble, but still well and truly functional. And the ones who were there to pass away are in their rooms, and you don’t see them. The night that the nurses had to leave my room, where they were in having a chat to me, to go and attend to a patient who was dying at that point…well, it was done so seamlessly and peacefully, I found it a bit of a comfort.

Everyone treats you with so much respect. Everyone knew about my book and there was a lot of excitement about it, everyone wanted to come in and talk about it. I really enjoyed this, as I try not to talk about the book nowadays, feeling like I might be boring people rigid by now. But the fact that the nurse manager came and and spoke to me for ages and thought that it was a very important book in a palliative care setting – I was really proud of that. I took a few books in with me as I like to leave them behind in the libraries for people to read, but the nurses insisted on buying them from me and having them signed. It was a nice thing, really nice, and provided a great distraction.

You can ALWAYS get a hug, or someone to have a chat to (or, conversely, put a sign on your door saying you don’t want to chat to anyone). One thing I was struggling with, I mean REALLY traumatised by was the time spent in hospital where no one seemed to care at all about the pain I was in. There were a few REALLY good nurses, very caring women, don’t get me wrong, but they are limited in what they can do. I couldn’t help but think of future times when I worsen, and I have to go in there and suffer like that again. So, the most comforting thing that they could, and did say to me was that unless it was a really acute medical or surgically issue, now that I was linked in with them, I never had to go back there again, and even in the case of needing surgery etc, as soon as I was stable I could be transferred to them to do my recovery there. “you’re ours now”, they said with glee. Gotta be happy with that. They said that any time it felt too much, I could just ring up and say I wanted to come in for a few days, and as soon as there was a bed, in I would come. Mental health wise, probably the best thing that could have happened to me.

During my stay, my baby nephew was being Christened on the other side of town. I didn’t want to miss it, and they were happy for me to go, and set me up with pain breakthrough tablets. It was a huge day – Gaz drove me over, but had a shocking case of man flu that he didn’t want to give to the baby or any of the other kids, so I just looked after my kids all day as mums do…tiring, as I had not done it in a while, but refreshing. By the time I got back to the unit though, it had started to take it’s toll a little bit, nothing major, but I was pretty wiped out. They just took one look at me when I walked in and ushered me into bed, a nurse following about 30 seconds later with a breakthrough syringe. They can anticipate everything you need with just one look. It’s just SO relaxing.

Pain wise, we hit the jackpot with the norspan patches, and fentanyl lollipop sticks for breakthrough pain, and the syringe driver was removed at my request. It works, and it is so simple, two patches I only have to think about once a week, and these lollipops, down from a cocktail of about 12 different drugs, all of which were doing jackshit anyway.

On the day that I decided to discharge home, Dr Brian said that he needed one more day, he wasn’t quite there with everything yet to his satisfaction. I was in a bit of a quandry, as it was Bachelor premiere night (hey, don’t judge me, lol), and my middle girls were so excited that I was going to be home for it. But, I decided that I could have them both stay over with me in the room – relatives and children were encouraged to stay, and all my kids had already had an individual night with me.

So, the night before my discharge found Indi and Tana and I having our very own Bachelor party. Kez had bought them in, with snacks, strawberries, chocolate dipping sauce, and we had the BEST NIGHT EVER. Instead of all the frowning that goes on in the hospital, we had nurses coming in and out all night checking out the fun, wondering if we wanted anything. Instead of remembering that night as something that they missed out on because mummy was sick, it will be something that will be a happy memory for them forever.

The next day I tearfully introduced Gaz to Dr Brian as the man who saved my life. He really did, the whole place did. He said that any sign of there being pain again, I was just to pop back in and he will have it sorted immediately. What, no hanging around in emergency departments for hours or days, only to get no relief anyway? The change in me was staggering.

I’ve been home for two weeks now. I have attended a few social occasions, had friends over, am taking an interest in life again. I’ve done nearly all the school runs, the shopping, sometimes the cooking, lol. Family life is all I pretty much crave nowadays, just the every day things mean the most to me, and they mean the most to Gaz and the children.

Scary as it was, going into that hospice was the best, and smartest (and bravest) thing that I have ever done. And because of it, I have my life back. I am on a new treatment, and will know after scans next week whether it is working or not. Dr Brian patted my hand one day and said that we both knew that he wasn’t sending me home forever, but “for a good period of time, I think”. And while it has this much quality, I am going to hang on tight. I never thought I would have this again.

For my fellow friends with cancer, if you have stage 4 cancer, please join the palliative care program, and please utilise the services of a hospice if you are in chronic and unbearable pain. That constant horrific treadmill from home to the emergency department to get some pain relief and then get home, only to start the whole bullshit over again – you don’t have to do that.

19 Comments on “It’s (not) all palliative

  1. Hi Julie
    I am so glad for that it is all going well for you, its just fantastic. I wish Leia had this offered to her over her last weeks. I am so happy to read you are doing well and wish the best in the future for you and your family. I know what you are going through is so damn hard after going through a short 5 months with Leia, i have so many unanswered questions and it still angers me. Just enjoy everyday with your family and know that I think of you everyday xxoo

  2. Oh wow. That was such a hopeful & encouraging read and you’ve got some wonderful people in the professional aspect of your world helping exactly as you want to be helped. Such a win for you and the family and palliative care. Thank you so much for sharing your life story.

  3. Thank you for this, I was in the palliative care program in Adelaide (Daws Road House) in 2014 and had massages etc., only. I have stage 3 Ovarian cancer which I had treatment for with chemo and surgery and eventually went back to work. I had 12 months of freedom but started growing again. I have been on another lot of chemo which is working. Thank you for your blog on the hospice as it something that is scary and it makes me a little more comfortable for when my time comes.

  4. Thank you Julia! Your words are inspiring! You have explained hospice care very nicely and I will certainly use hospice care later in my journey with cancer as time progresses. Mostly I am happy that you have quality again and that you are making happy memories with your beautiful family…hugs xx

  5. What an amazing lady you are. Inspirational reading. Wishing you so many more pain free days.

  6. You really are a champion, Julia. I know I’m not the only one praying that you get great news soon xoxo

  7. So glad you found this amazing place and have shared positive vibes to others about it. Continued good luck Julia

  8. Thanks for this.
    My wife and love of my life, recently passed away in Hospice care, a welcome relief to all of us.
    Hospice were as you say caring and the best at what they do.
    I know Cheryl wasn’t wanting to admit to that care but was certainly soothed by their care.
    Darryl

  9. This is a great article. I just was at Wedgetail Retreat for the last 4 days of my partners life. He was so resistant that we basically had to have every person he trusted talk him into it. It was just amazing & made what was a very hard time as peaceful & pain free & beautiful as it can be. He even said the day before he was feeling so rested & happy there. I can not thank them enough for what they did. He had been pushing to come home after the hospital, and at twice my size it would have been an awful time for all involved. He was totally bed bound & full care, I had somehow managed until the last week of his illness. So it was great those in the know really pushed us to palliative care.
    I wish we had done as this lady did and gone there before a few times, it would have made things a lot easier on us all. But like she said so many people are so afraid of the title that they avoid it like the plague thinking that it is a never leave situation. If we had gone when advised we would have been in & out a few times before the end. Wedgetail retreat is a charity run organisation & runs on donations & volunteers. If so inclined please donate via their website so they can help the next person like they did Dru. http://wedgetailretreat.com.au

  10. Julia, you have done it , achieved nil pain, become nearly “yourself”again and have become a truly positive guiding light to your nearest and dearest.This is a really wonderful outcome for yourself,Gaz snd the girls. !!!!! Absolutely thrilled for you that each day and each moment are truly full of light,love, sunshine and blessings.
    You give so much to others ,now it’s time to return and share with Gaz and the girls.
    Your writing in your blogs gives so much to others.Love you heaps for your honesty, your selflessness and your genuine love for others.Love hugs,prayers and blessings dear friend, always to you all.xxx thank you with love.

  11. As a student nurse words can not express how much I appreciate being able to follow along on Facebook and read your blog. You truly are an inspiration and the insight you provide is not something I could ever learn from a textbook nor even be taught by my lecturers. I have recently completed a online course in Palliative Care (alongside my degree), but everything I have read in your blog has given me so much more. I am thrilled that the wonderful team has enabled you to be pain free to enjoy a much better quality of life. You have taught me many things whilst following your journey, but thank you for teaching me how to be a better nurse xo

  12. I am so in awe of your writing, Julia.
    Sharing such a difficult topic and your heartfelt thoughts is so difficult. You are always thinking of others and you shine brightly. It’s a privilege I wish we didn’t have to have reading this.

  13. Julia, I have only recently followed you and found your journey to be awe inspiring. My heat has broken for you when you have been through so much pain in recent times and so sad that it seemed to be debilitating your positivity. After reading this post I am so over the moon for your and your precious family and totally understand that the more normal part of your everyday life it what you crave for. As a stage 4 cancer patient, it give people like myself great hope and lessens the fear of what is to come by reading about your journey. The fear of the unknown future is our most debilitating symptom to our illness and therefore I am eternally grateful to you for sharing your journey in such a candid and heartfelt way. My prays for you are that you can enjoy your precious family painfree for as long as possible. Sending you love and warm hugs.

  14. You are such an amazing woman! I lost my dad last year to cancer and the best thing we did was get him into a hospice. I wish we had got him palitive care sooner for the pain. The nurses not only looked after him until the end but they looked after me when I would rock up with my pillow in the middle of the night. I am so happy that you are spreading the word on what an amazing job they do. I wish you love and light, thankyou for being open and honest about this horrible disease. Xx

  15. Wonderful article!

    I requested to my oncologist to send me to a pallative care team, but unfortunately he said there are none in this area! You are so fortunate.

    Thanks for sharing!

  16. Truly amazing news about your latest scan results. SO happy for you! Let’s hope they take you a long way, enough time for another development?? Fingers and toes crossed xxx

  17. I don’t have Facebook so I came here to say YEEEYY!! What wonderful news! You must be over the moon. So very happy for you, Julia. Enjoy xoxo

  18. Pingback: The Ultimate Rabbit Hole #83: Bupa Blog Award Winners - Calm to Conniption

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