The beginning

We are coming up to the first anniversary of Caroline’s diagnosis with acute myeloid leukaemia. I remember that time like it was yesterday. This is an email Caroline sent me while I was at work on October 24.

“A very nice doctor called Michele Damon (sic) called me and said I have to have a bone marrow biopsy on Monday. They were considering calling me in today to stay for the weekend but because I feel well they’re allowing me to be an outpatient.

Also have to have another blood test in the morning to determine coagulation etc.
She explained the bone marrow procedure and also explained that it could be acute leukemia. That’s worst case. There are other malignant illnesses as well, and it may be just something else altogether.
She’s scheduling another appt for early afternoon Friday for results. Unless the biopsy shows up something really bad then all bets are off.
She said if I have any signs of fever, sweats, bad bruising, bleeding from gums or nose I need to go to hospital immediately.
Here we go.
x”

And now, she is gone.

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The funeral service

The Funeral Service of my darling Caroline will be conducted entirely in the Heysen Chapel, Centennial Park Cemetery, 760 Goodwood Road. Pasadena,SA, on Monday July 7, 2014 at 11.am.

In lieu of floral tributes, a donation in memory of Caroline to the Leukemia Foundation would be appreciated and may be made at the time of the service.

TAYLOR & FORGIE
Funeral Directors
Accredited Member AFDA
Gawler (08) 8522 1734

A love lost

I once wrote to a friend that 22 years ago, Caroline Roessler stole my heart and gave it back to me over time, bit by bit, each piece making me little stronger than when she took it.

Today, my heart has been smashed apart, and I wonder how It will ever be put right.

Rest in peace my darling girl. The world is an emptier, less beautiful and much sadder place without you.

I love you.

Donna
X

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Sleeping beauty

It’s 8.15 pm. I’m writing this from Caroline’s hospice room which is part of Modbury hospital. The hospice is on level four, and it has views looking out to a big Westfield shopping centre, in case anyone was wondering.

The process of Caroline being admitted into the palliative care ward happened much quicker than either of us thought it would. On Friday morning C had made the decision to stop taking her chemo tablets. It was a decision we’d talked about before and agreed that C would know when the time was right. When she woke up Friday, she knew it was time. She was struggling to get out of bed such was the level of her exhaustion, her spleen was still causing her pain and she said that she felt as though she wasn’t weeing or pooing properly. Like her body was starting to fail.

It was an emotional decision to make not only because of the consequences, but because a part of Caroline felt that she was giving up. I told her she wasn’t giving up, she was simply letting go of all that was holding her back from where she needed to be: that by letting go of everything she could relax. And find some peace. I think she managed to reframe her decision in that light and did seem relieved.

After this conversation I rang the registrar, Michelle, to ask how quickly the leukemia would progress. It was a moot question. The leakemia had already started to take over, and C’s blasts were at 47%. The decision to stop the chemo was also redundant, which seemed to vindicate the path C has chosen for herself.

Anyway, after a few more phone calls with doctors and the palliative care people, a bed was made available for C and she was transported from home by ambulance at 2.30pm. Seeing her strapped to a stretcher and lifted into the back of the ambulance, knowing she was never coming home, was one of the first of many meltdowns that day.

At the hospice we met the doctors and were told that Caroline’s time with us would be very short. A few days probably. The best case scenario is that C ends up sleeping 24 hours a day and then quietly slips into a coma. She is close to this now. Staying awake is a chore and she has little energy to talk. The worst case scenarios don’t need to mentioned.

As it stands now, C has stopped all her pills except her pain management. Her spleen is enormous and she could be mistaken for being pregnant. Eating is of little interest.

Her registrar paid her a social visit last night as a friend, not a doctor. Again, a huge indication of the amazing care the medical team has always given Caroline.

Yesterday I said to Caroline that maybe we had been greedy with our love. That perhaps there are only so many kisses you are allowed in your life and rather than the leakemia killing her, she had just run out of kisses. It makes, for both of us, the process of dying a more gentle one, rather than the brutal reality that Caroline’s body has betrayed her in the most brutal and cruelest of ways.

My baby’s out of time

We had a call from the registrar, Michelle, last night. It wasn’t the usual “”we need to change you medications call” or “you need to go and have a transfusion call”. It was a call to tell us that based on Caroline’s blood results, and all of the physical symptoms she is experiencing, my darling girl only has a few weeks to live. If something catastrophic happened, like and infection or internal bleeding due to her low platelet level, it could be days.

Michelle spoke with Caroline first, and then with me. Surprisingly, C and I were remarkably calm at receiving this news. We had both had a very teary day yesterday, which is unusual for us, so it was like in some way we knew what was happening. Michelle just confirmed it.

Each day now is more of a struggle for Caroline. Getting out of bed takes all of her mental and physical strength, and showering and dressing sees her need to lie on the couch. Her appetite is minimal but she is still eating, and she’s trying to keep her fluid levels up.  She generally sleeps around 20 hours a day but can stay awake longer. It does, however, totally deplete her. She’s alert when she’s awake, so we are able to have conversations. About life and love mostly. And life after her death. They are heart wrenching, yet also lovely and reassuring.

None of this is, however, easy. We both feel like out hearts have been smashed open and our lives torn apart. And we don’t understand why all this had to happen. We remind ourselves that we are incredibly lucky to have 22 years of pure love together, but feel cheated and angry that we don’t get to have 22 more.

We had previously made a decision that we both wanted. if possible, for Caroline to die at home. However, having talked with Michelle, we are now looking into hospice care. That fact is that it can be quite a harrowing experience watching someone die alone, and there is no guarantee that help would arrive in time to be with me.  Also, as Caroline worsens there is a big possibly that she will be so overcome with exhaustion that even walking to the toilet will become impossible. Hospice care means that I can be with my lovely girl as we have always been together, as partners, and not as her carer. There will be a team of experts working to care for her and make the transition as peaceful and pain free as possible. We are speaking to our palliative care nurse – yes, we now are in the palliative care system – on Monday. And we hope, that when the time comes, a bed is available.

x

 

 

So, it’s been a while. Soz.

I’m writing this from the emergency department of the Royal Adelaide Hoapital. Caroline was feeling particularly unwell this morning and despite not having a temperature she wanted to be admitted. She is currently off having a chest X-ray and ward C6 are holding a bed for her. Hopefully it won’t be too long before we are back in familiar territory with familiar nurses and doctors.

So. It has been a hellish eight days or so. Generally I find writing about it quite easy but the past week or so I have had no desire to document the horror of watching C distressed and noticeabley decline in some areas.

Apologies in advance if this jumps all over the place.

I think when I last wrote C had come home from hospital with oxygen. She has weaned herself off that now, but the legacy of having nasal tubes pumping air into her lungs has left her with an unbearably sore and raw, scabby nose that bleeds quite often. Not gushing nosebleeds, but still, it leaves her with a constant taste of iron in her mouth. Her lips are badly cracked but it is her mouth that is causing her unbearable pain. C has hardly been able to sleep the past few nights because her mouth dries out to such a point each breath feels like it’s burning her. The doctor has also told us today that she has mouth ulcers.

For the past few days C has also had trouble with her vision. Everything seems blurry – like her eyes are covered with Vaseline. This is a particularly scary development for Caroline as she can hardly read or watch tv. She is seeing the opthamologists tomorrow to determine what might be causing it.

On top of these problems are night sweats, which require C to change two or three times during the night.

C’s spleen is still enlarged and tender, and although she had a massive build of fluid in her abdomen and legs (she put on eighth kilos in five days despite eating very little) that seems to be more under control.

But by far the worst thing at the moment is the unrelenting fatigue. C literally can’t stay awake for more than 10-15 minutes at a time. She sleeps around 21 hours a day and spends her waking hours lying down. The most she is capable of is showering and going to the toilet. The smallest task tires her. I am doing everything for her as she really can’t even make herself a sandwich. This level of fatigue is devastating for C and she has been very emotional the past week. There have been lots of tears and a worry that it is all getting too much. Initially we thought the pain meds for her spleen were knocking her out but they were adjusted and it hasn’t helped that much.

If you ask C how she feels, she just says she feels totally shit. Worse than she ever has. We are at the hospital hoping for some answers about the fatigue and her eyes, as well to be sure there is nothing going on that we don’t know about.

I hope this makes sense. We are both tired and done in by the emotions
of the past week.

Transitions

Caroline is coming home from hospital today, complete with her own supply of oxygen and carrying an extra six kilos in weight because of her enlarged spleen and a build up fluids in her body. Her abdomen is swollen and often tight to the touch, and she said today she no longer has ankles, just stumps.

It’s been a tough few days. Despite the pain from her spleen now being under control, we have had some intense conversations around the type of treatment Caroline now wants to pursue, given that her the blasted blast cells are now up to 40%. Yes. 40%. There had been talk of doing another, high intensity round of Donor Lymphocyte Infusion, using Christian’s cells to try and stimulate any sort of graft versus host reaction. The downside of this was that if it happened, the dose would be quite large and the graft versus host could cause massive, sometimes fatal, and definitely painful side effects. It probably also wouldn’t do much to get rid of the disease because Caroline’s leukemia load is so high. The plus side was that there was miniscule chance it might work, so do you risk it for that chance?

There was another treatment option offered which perhaps will give her, and us, a little more time, but is no way at all curative. And that option is the palliative chemo Hydroxyuera. It’s taken in tablet form twice a day, and reduces all of her blood counts. So, while it attacks the blast cells, it also attacks her healthy platelets and heamoglobin and white blood cells, making her increasingly dependent on blood transfusions and at greater risk of infection. It doesn’t do anything to destroy the underlying disease, but there is a slight hope that the blast percentage might drop enough that attempting a DLI becomes feasible.

For the first time since the original diagnosis, Caroline asked to be able to think about these options overnight, and also wanted to hear what the consultants – who were meeting the next day – thought was the best option. In the end, Caroline has decided to go with palliative chemo, which she started on the evening of June 3. We, and the doctors, are still clinging to the hope that something will eventually work, because without hope, there is nothing.

The word palliative is a scary one, because of its underlying implications. But this is the reality of the situation. Caroline is terminally unwell. She hasn’t left her bed – except to shower and use the bathroom – for the past week because of  the pain and her ever-increasing exhaustion. There has been a shift in her mindset from eternal and strong optimism, to a hope that while a miracle may occur, the prospect of dying is real. She uses the word acceptance now, and slowly seems to becoming more at peace within herself of this whole process. She told me this morning that she has this lovely feeling that even when we are apart, it feels like I am always in the room with her, which brings her comfort. I wish I had that. When I actually dare to acknowledge – not accept – what is happening, it brings me nothing but shattering pain.

Today, when I go the hospital to bring Caroline home, I will be meeting a member of the palliative care team. Caroline has already met them and says that they are amazing – they don’t just talk about putting you in a room and making you comfortable before you die. They offer services to keep you living as best as life as you can form as long as possible. And they ask some tough questions to gently prompt you talk about things that, quite frankly, you don’t necessarily want to think about. As such, Caroline and I have to discuss where she might like to die, and where I would prefer it to be. Although, obviously, Caroline’s wishes will override all else. I am worried that if she chooses to die at home, our bedroom, which has been a source of closeness and comfort for 22 years, will become the room that Caroline died in. She’s worried that if she dies at home, I will wake up and find her dead beside me, and that I will be alone and have to deal with it. But, there is also her totally understand and natural desire to say goodbye to her life in the safety of her own home, filled with her love and her life, surrounding her.

Anyway, Caroline is coming home. I will be her carer, as she won’t be able to do much except low-level faffing. In some ways, this a good thing, as I will learn from C how she manages to make such a beautiful home for us. One that I sometimes have taken for granted, but never will again.

 

UPDATE: An hour after writing this post we have just been told that C’s blasts have dropped from 40% to 15%, so the chemo seems to be doing its thing. This is fantastic news, and also shows what a fucking emotional roller coaster leukemia is. x