Things falling apart

I’m just coming to the end of my second two week chemo cycle. Any dreams I had of the first being an anomaly were crushed pretty quickly. By Monday, I had all but recovered from the first round. I showed up at the hospital after a lovely breakfast at a cafe with Marcie and my beautiful friend Ros feeling strong and positive. The next round would be different. I had an appointment with my oncologist first. I spoke about my experience and he said that it can happen. He said he didn’t want to change anything about my treatment at this stage and that we needed to keep the bigger picture in mind. All totally rational things. I took myself into the chemo room and sat in my chair. It all went smoothly - the cold cap was hard work again. By the end of the treatment, I was already beginning to feel the fatigue wash over me. I was picked up by my brother and came home feeling increasingly awful.

I feel asleep around nine and woke up a couple of hours later in horror. I was feeling so unbelievably bad - everything in my body hurt, I was nauseous, couldn’t get water down because of burning acid reflux, couldn’t stand up. This feeling continued for ten days.

Thursday night I was standing at the backdoor when I ran my fingers through my hair and produced a handful of strands. I began pulling out more and more. I called Mum and Marcie to come and have a look. It had begun and has continued unabated since. Each day it’s coming out in enormous handfuls. It has become so thin, but there are still no bald patches. Hair is everywhere… all over me, sticking to my clothes, in my bed, on the floor… it makes me feel ill.

On the following Friday, I was admitted to hospital. It had all just gotten too much. They kept me in over night and I was sent home the following morning.

Around 1am on Sunday morning, I woke with pains in my chest. I checked my heart rate on my Apple watch and it was 165 - just lying in bed. This continued on and off throughout the night and in the morning I called oncology who told me to call an ambulance. Heart damage is a known side effect of Doxorubicin - my red chemo drug. I was taken to the hospital where I was wheeled on the stretcher into emergency pretty quickly. When they discovered I was undergoing chemotherapy, I was moved into a sealed glass room that was thoroughly cleaned before I was allowed in. Everyone who came in had to sanitise and cover up with mask, goggles, gloves and a plastic apron. I had a million tests as they looked for infections and clots. I was able to go home that evening with a referral for another ECG.

I had hoped that I would be able to get to work Thursday and Friday of the second week at least. This is the part of the chemotherapy cycle where I am most immunocompromised, but last cycle I managed to go and feel ok. By Wednesday morning, I knew it wasn’t going to happen.

I had to face the facts that this situation wasn’t sustainable. In the three weeks of the school term so far, I’d only managed to work two days. I had a generous amount of sick leave at the beginning of the year, but between tests, scans, other appointments, surgery and now chemo, it was fast depleting. On Tuesday night I had a call from Dad. It was a tough chat, but I knew it had to be done. We decided that I need to pack up my life here in Newcastle and move home to Green Point. Marcie will need to stay here as she has work and life here. She will move out.

May 8

I had a terrible day today. I was very teary and feeling sick and so, so tired. I slept ten hours last night and still woke feeling exhausted and awful. The site of my mastectomy is red and hot and a bit painful. I have been checking for a fever but I don’t have one. Yesterday I called Helen because I have begun to notice some swelling in my arm. I had 19 lymph nodes removed and that’s a lot. The risk of developing lymphodema is high and quite dangerous. I had to cancel my second physio appointment because I was so sick from the chemo and have not been able to reschedule. Helen called Aoife my specialist physio and managed to get me an appointment for Monday morning at 9 before my oncologist appointment pre chemo at 10.

I am going to have to explain to my oncologist about having to move to Forster and see if I can organise to continue my treatment at the private hospital up there. I will then have to give notice to the real estate and hand the move over to my family and friends. I will be completeley out of action after the chemo. There are so many things to organise, pack, decide, let go of. I am so overwhelmed and feeling so sick and tired that I can’t do any of it. This cancer has cost me so much - my home, my job, the life I had built for myself here in Newcastle. I am moving home age 43. The hardest thing is that my little Marcie, who I have lived with for 25 years - most of it just her and I, will no longer be together.

I called Mum and Dad today while driving around aimlessly in my car. I am just feeing so low and defeated. It really feels like there’s nothing good happening in my life - all the things coming are awful and hard. I just wish that I had something nice to think about. I called them and cried and drove. I am so afraid of chemo on Monday. I just haven’t bounced back from the last round. My heart rate is so high all of the time. It was 100 all night last night. I just don’t feel strong enough. I know there are so many things to be thankful for but at the moment it’s not enough. Mum and Dad are one of those things to be thankful for, and my brother who arrives at a moment’s notice for anything I need. Mum and Dad listened and talked me through it. They are coming back on Monday to help with the packing and think it might be best if I go back to their place. There is so much to do here to organise the move and I can’t do anything about it. There’s hair everywhere and it’s really getting to me. I can’t even get out the vacuum cleaner to tidy it up. I’m worried that I won’t be well enough to travel.

I’ve spent the afternoon lying in bed, feeling teary and cuddling my dogs.

May 10

It’s Monday, I’m lying in a hospital bed at the Mater. I’m in a shared room in a public hospital. I’m supposed to be in Newcastle private getting my third round of chemo. I was also supposed to have my physio appointment this morning.

Saturday night was going well, I was still feeling awful but Marcie had cooked a lovely dinner and we were lying in my bed watching Netflix together. At about 8pm I check my temperature and discovered I had a fever… disaster. My oncology team had told me that a fever while on chemo is a medical emergency. As soon as it hits 38 - straight to hospital. I rang the oncology nurses and they told me to go straight to the ED at the public hospital. As I was on the phone I had a missed call from my brother who was driving home from an early gig, just checking in to see how I was. I told him and he was at my door in five minutes.

We went and waited in the ED to be triaged. It was pretty busy and people were being told there was a long wait because the department was full. I was seen in about 40 minutes and they got me straight in to take bloods and put in a cannula. A nurse came and pushed anitibiotics straight into my cannula - it was agony. I was given a stretcher in the ED in a little room with four other people. I was sent for a chest xray at 3am and then had a ultrasound of my mastectomy site after that. There was fluid in there and the skin looked inflamed. I was in the ED waiting for a bed on the ward until 12pm the following day.

The following day was Mother’s Day.

I spent it alone in my hospital bed, being poked and prodded, pumped full of antibiotics. Ros and Marcie came in for a short visit in the evening. It was lovely to see them.

After not sleeping the night before, I was exhausted. My cannula site was really sore and swollen. Apparently pushing straight antibiotics into the veins of chemo patients is a really bad idea - they’re fragile and precious. The night nurse was furious it had been done to me in triage. I had my cannula taken out at around 7pm and they came to put a new one in at 10pm. Apparently I’m running low on usable veins. The nurse was amazing but still I began crying - exhausted and stressed.

Today they had been talking of transferring me to Newcastle Private where I am having my chemo. I was so excited at the prospect of getting into a private room. The room I am in has four beds - 2 elderly people and a guy in his fifties. Lots of chatting and socialising which I usually wouldn’t mind, but I’m quite teary and so very, very tired. It’s also been very confronting as people have quite intense medical procedures done in the bed next to you behind a thin curtain. I ended up having about three hours sleep again last night - I’m sure that’s not helping.

My surgical oncologist came to see me this morning and have a look at the surgery site. He doesn’t want to me to be transferred to the private hospital because he doesn’t work out of that one. He would prefer me to stay here another night and to have my wound drained with a big needle. Not the news I was hoping for.

Today I was supposed to have my third round of chemo. I was also meant to be seeing my physio. There’s no phone reception in the ward so I couldn’t even call to cancel. Mum managed to cancel my physio appointment and the nurses have contacted my the oncology unit to let them know I won’t be in. I sent Helen a text message to let her know that I’d missed the physio appointment that she had organised for me.

I was so tired, so upset, feeling completely out of control of my life. My hair is falling out, my house is being packed up and loaded onto a trailer, I am no longer a teacher, the next brutal round of chemo is looming over me and they keep sticking me with needles. I spent the morning lying in bed, crying in an evergrowing nest of my own hair.

Then Helen walked in.

She sat on the end of my bed and listened. I told her everything that’s happening and she took the reins. She was going to contact my oncologist here in Newcastle and tell him I have to move, contact the oncologist in Forster (who she knows) and tell her to expect me, organise a physio here at the Mater to see me today. She was going to drain my wound for me and see if a social worker could offer any help with the move and transition from full time work.

While she was there, I was moved to a quieter all-female room. The draining was fine and I was so glad it was done by someone I know in my fragile state. After Helen left, the physio came and massaged my arm which has been really painful due to a condition called cording that can happen after a lymph node clearance. She also took me to the physio room and assessed me for lymphodema. The tests were all good. She said that because the swelling in my arm after my ten days in bed is being resolved when I’m active again, it’s ok. I managed a half hour power nap and Mum and Dad came in to visit. We talked about me driving to Forster before the end of the week. It’s so confronting. Marcie found a wonderful place today that she would love to move into. She’ll hear back from them tomorrow. She is so excited and that’s making me happy.

I’m ending today feeling a lot more positive. A shower (my first in a few days) did a world of good. I am hoping to get home tomorrow and get a few good days in before chemo starts again.

May 12

I was given the green light to go home yesterday morning, but not before I got a call from the oncology nurse at Newcastle Private. She told me Dr Paterson had cleared me for chemo tomorrow. This filled me with dread and horror. I had all but run out of usable veins after daily blood tests and multiple cannulas. I was exhausted from my hospital stay and needed time to pack my essentials for for Forster before I was thrust into another ten days of chemo hell. I told her I’d see her on Thursday. After a bit of bargaining she agreed. One day off was better than nothing.

Coming home was monumental. Such a lovely feeling to walk into my home and be greeted by my dogs. So good to see Mum and Marce. Confronting to see my home in boxes and gaping holes where my furniture once was. I had a long hot bath that night and enjoyed every moment of peace, sleeping uninterrupted for eight hours.