The Easter Bunny has granted me my wish and I'm home, I'm finally home with my babies on Easter Sunday! Happy...oh yeah baby!!!
It's Easter Saturday, I'm homesick like crazy for my babies. I just want to sleep in my own bed.
Must be a good sign...I'm ready to go. The Dr gave the all clear for me to be discharged tomorrow if I can keep all my tablets down...so far so good. I may even make it to the Easter Egg Hunt in Glebe Park tomorrow morning.
I am so relieved that I've perked up today. The last few days have been very ordinary but compared to the first round of chemo it's been a big improvement.
Progress peoples, progress!
Time is slipping through my fingers. I've been in here for two weeks. It's been a crash course in cancer...in all its extremes.
I finally found myself in a private room after a rather distressing weekend.
I had to endure watching room mates, women I'd gotten to know, being treated for hours by the intensive care team to get them stabilised. Heart rates, fevers, blood pressure and breathing all out of control. None of them could move or feed themselves and I was watching them wasting away to a shadow. Two of the women had bowel cancer and were severely incontinent which made the room unbearable to be in. The lady beside me had internal bleeding and a perforated bowel, she went for surgery and didn't come back. I was the only relatively healthy patient in the room and it felt like a suffocatingly toxic place to be. So I slept on a couch in the patient lounge Saturday & Sunday nights and walked the hallways as much as I could to escape it. Emotionally it was incredibly hard.
I am immensely grateful that my Social Worker and Breast Care Nurse both popped in on Monday morning and I was able to tell them how I was feeling. I was honest and said that I would prefer to go home then stay in such a distressing & toxic environment. I knew that I wouldn't be able to cope with the smells and stress during my next chemo. So they kindly arranged a single room for me and it has made a world of difference.
My surgeon and oncologist came to see me later that day and gave me the all clear to start chemo on Tuesday.
Tuesday morning I had a bone scan over at Nuclear Imaging and then had chemo back in my room later that afternoon. Thanks to a sleeping pill I slept surprisingly well that night, only waking a couple of times with nausea. Wednesday was a haze of sleeping pills & anti-emetics, vomiting and nausea. Thursday & Friday were the same. I felt completely wiped out. My oncology team came by & discussed my options. Looks like we'll be changing my treatment from TAC to just TC. The middle drug is just too toxic for my system. They don't think I'll be out of here till next Tuesday. Goodbye Easter Weekend then.
Am feeling so exhausted and emotionally weak. I miss my babies, I miss my husband and I miss my home & friends. Am feeling a massive amount of guilt for putting my family through so much stress. I know it's not my fault but it hurts to see my boys struggle. Especially Harry, he's not coping well.
I would love nothing more than for this whole horrible nightmare to go away.
Harry: "Mummy, I wish I could have chemo".
Mummy: "Darling, why do you want to have chemo?".
Harry: "I wish that I had cancer too".
Mummy: "Oh Honey, why do you want to have cancer?".
Harry: "So that I could stay in hospital with you".
(My heart just broke into a thousand tiny shards)
Mummy: "Oh Baby, I know...I know, its hard. Mummy misses you too. It won't be forever. It feels like forever but things will get better, Mummy will get better and I'll come home.
Harry: "When I grow up to be a Daddy I'm going to marry you".
(The thousand tiny shards of my heart just knit themselves back together).
I have been struck by the beauty found in impossibly sad situations here in the oncology ward.
Yesterday a gentleman was heading home to die. As he was being wheeled out of the ward all the nurses lined the hallway and sang 'You Are My Sunshine'. He had the most radiant smile on his weary face.
Last night the woman in the bed next to me spent hours planning her funeral in fine detail with her two best friends. Her doctor had been by earlier and answered all her questions about what her death would be like. He was kind, respectful and honest. I am grateful that she will likely slip into a coma and peacefully pass away.
Despite all the pain, the mess, the fear...there are flashes of dignity, love and compassion in this place. The nursing staff are amazing...never will I take them for granted.
For someone who simply cannot stand daytime soapies, my life is starting to suspiciously resemble one!
So...it appears I have a bit of a superbug in my new boob and its stubbornly refusing to go away despite two types of antibiotics. My oncologist is chasing up my surgeon because the next step, if things don't miraculously resolve within 48hrs, is to remove my implant. Today's port surgery has been canned, tomorrow's chemo postponed...it's a game of hurry up & wait...again. Thank goodness I'm a fairly patient patient. Hey...maybe that's why we're called patients!
Off for an ultrasound in an hour. Not looking forward to the royal tour being wheeled through the hospital lobby to Imaging on my bed wearing a glam hospital gown. Thankfully the wardsmen are always cheerful chatty types so that makes it easier.
I got my head shaved on Saturday afternoon during a couple of hours leave from hospital. The last little wispy bits made my scalp quite tender so I decided to get rid of them. Thankfully my hairdresser was free to do it for me. It felt important for some reason that she be the one to give me my one & only buzz cut.
I thought that I'd be quite emotional as she did it but I was strangely calm. I felt bad for the other clients whose jaws all dropped when I pulled off my headscarf. The pity in the room was palpable and I wanted to tell them that it was ok, I'm ok. Its just hair. Of course, thinking about it now...to those clients in that salon hair is rather important...$100 for just a trim, yes, hair was up there on their priority lists. Oh how my priorities have changed.
My hairdresser was fab...no "holy fucks!" this time but we had a good chat and a laugh. She was a little tentative about hurting my scalp but shaving my head actually gave me relief and felt so much better. When it was done I wrapped my new baldy head back up in its scarf, gave her a hug goodbye and walked out the door. It was only when I got to my car that I briefly felt a little teary.
Driving back to the hospital I realised that the picc line that had been inserted into my left arm on Friday was bleeding...a lot. I had no idea how long for, i couldn't feel a thing. So I hightailed it straight back to oncology. One pressure bandage and half an hour later the bleeding had stopped and a new dressing had been put on. My veins are well and truly kaput now. Cannulas are no longer an option. I think I rather the pic line anyway, its a lot less painful and awkward.
That night I tried to have a sneaky quiet cry about losing my hair, but one of my favourite night nurses, Sean, caught me wiping away tears. He was fab, told me to have a good bawl and get it out of my system. He called in my other favourite nurse, James, who sat on the bed, gave me a hug and joked about my hair coming back red & curly. If only he knew what my late grandfather looked like! Sean came back in with a little vase holding pink & orange gerberras. So sweet!
The next evening Sean came on shift bearing a large gift bag filled with one hot pink glitter cabaret hat; one red tinsel wig; one cuddly teddy and enough chocolate to turn me diabetic. I gave him a huge hug and burst out laughing. I had to promise that I would do a Liza Minnelli performance in my pink hat out by the nurses station...I'm working on it. He is beyond awesome! How lucky am I!!!
Still here...in hospital.
Infection has gotten worse. Starting to look like I'm going to lose my new boob.
Doesn't matter, not a tosh!
All I have to do is look around me and I gain a healthy dose of perspective.
I'm doing ok.
I'm not dying...all my roommates are...terminal is a well used term in this room.
I'm doing ok.
After a very decent night's sleep in the ward I popped down to surgical pre-admission bright and early this morning. I'm booked to have my port surgery on Tuesday ready for chemo on Wednesday. (Fingers & toes crossed that my infection has improved out of sight by Monday or all bets are off!). The anaesthetist was a bit of a smarmy bugger but the appointment was over & done with in 20 minutes. Wandering back through the lobby I passed a Bakers Delight fundraising table selling packs of hot cross buns so I bought a dozen mocha ones and took them back to the nurses station. If I'm going to be the problem child in Oncology, then dammit I'm going to be the GOLDEN problem child. Totally sweetened them up! They love me now!
So...I'm hanging about in hospital with the occasional dash back home for a couple of hours to see my boys in between treatments. Happy days...
I just can't seem to get enough of this place...Oncology Ward that is. I got here at 10am for my regular appt with my Medical Oncologist and nearly eight hours later I'm still here...now with cannula in hand ready to take my antibiotic IV cocktail. Silly staph infection in my lovely new boob, Gahhhh!
It's been a long day...poor Jackman, bless his tiny cotton socks, was stuck with me in the waiting room for four hours while my Drs worked out how to crack this infection and organised a bed on the ward. He was incredibly well behaved & patient the whole time. Hubby picked him up at 2pm and took him home while I hung around for another couple of hours before being admitted. It was supposed to be a simple pre-chemo check but the infection warrants some serious attention so here I am again until I get the all clear...probably by Monday. I am learning patience on a whole new level.
So, one chemo down...five to go.
The first one may have wiped the floor with me but I've managed to stand back up again. That's a good thing right! I knew that this journey would be fraught with challenges and there are times like today that feel like those challenges are popping up like rabbits and I'm madly trying to knock each one on the head.
The nausea and bone pain have eased immensely since the weekend but a few new nasties have appeared with the dawn of a new week.
On Sunday I noticed a rash on my 'new' breast. With a low white cell count a rash is very much a concern so I went to my local ER that night. Thankfully they ruled out neutropenia but put me on a broad spectrum anti-biotic and advised calling my surgeon. Two days of anti-biotics later and a very red, angry rash had spread to 3/4 of my breast. My surgeon is away for two weeks and his clinic didn't get back to me so I decided to see what my Radiation Oncologist said. I had my first appointment with her today. She was quite concerned, took swabs and called Infectious Diseases for advice. Looks like I've contracted a staph infection that is resistant to certain antibiotics. Likely that its from my hospital room mate who had a staph infection in her port. Completely not her fault but why we were allowed to share a room is beyond me. Go figure! So, a new antibiotic for the next four days and if there's no improvement I'll be having an ultrasound to determine if there is an infection deeper than the skin. Either way...its not good.
Second little nasty - reflux. Holy burning oesophagus Batman!!! A joyful leftover from chemo which has kept me from sleep for several nights in a row. Now managed with medication and Mylanta. Chalky cocktail anyone?
The third...going bald. It was a nasty that I was expecting and now that its here I'm having an odd job of dealing with it. Yesterday my hair started coming away in tiny clumps. I had noticed that my hair had stopped growing and its been very brittle for the last week. On Monday I had the most insane headache which stayed with me for 24hrs and left my scalp quite tender. Today its been coming out in handfuls. I haven't had a chance to stock up on headscarves so I haven't attempted to pull it all out yet. Tomorrow I am going to buy a couple of scarves and on Saturday I will see how much hair I lose. Kind of hoping it all goes in one hit. I had an 'oh my god is this really happening to me' moment this afternoon. Its so easy to be brave about an event before it happens. In between hyperventilating at the thought of no hair, no eyebrows, no eyelashes...a voice of reason kicked in and told me to harden the fuck up. Its just hair, it WILL grow back and god dammit I am going to rock the headscarf look so Dry The Eyes Princess! There are other more important issues at play. Still, I'm sure I'll have a good cry on the weekend. I'll get Hubby to photograph me as I'm plucking away at my scalp like I'm de-feathering a chicken. My vanity will be seriously re-sized by Sunday.
Today was my first day back on my own two feet, taking care of my boys by myself. My wonderful Mum flew home this morning and I can't tell you how grateful we are for her support. We honestly wouldn't have survived the last ten days without her. I wish to heaven that my family lived in the same town...anyhoo, they don't and I have to jump back into the saddle pronto. It was an exhausting day but I'm learning to pace myself. A lot of the time I'm teetering on the edge of exhaustion, my body feels fragile now, but a few well timed rests on the couch managed to get me through today. I'm just going to have to be sensible and pay attention to what my body is telling me. We have managed to snavel one day a week of emergency childcare for Jack for the next few months. Luck would have it that its a Friday so Harry will be at Preschool and Jack in childcare, leaving me home by myself to either rest or go to appointments. The centre is going to try and give us a Thursday for Jack too which would be great, particularly on the weeks that I have chemo which is a Wednesday...giving me two days to recover without the worry of how to care for my boys.
And to finish off this rather jumbled post...my Radiation Oncology consult. I honestly didn't think that I was going to have to have radiation. My surgeon didn't seem to think so and my Medical Oncologist wasn't sure. But as ever...my pathology put me right on the fence and my Radiation Oncologist seems to think that five weeks of radiation therapy will reduce the risk of the cancer returning from 20% down to 5%. Thats quite a significant reduction. I felt a bit upset after my appointment. Like I'd been plonked on a runaway train and didn't have the option of jumping off when it got too much. Emotionally its a bit like having a gun put to your head...you could refuse the treatment but if that cancer comes back its likely to come back in an untreatable and terminal form...no second chances. I don't want to go through radiation...chemo has been so horrific already, isn't that enough? And yet...I could never forgive myself if I didn't follow my doctor's advice and as a result that stray little cancer cell returns in five years time as bone cancer or blood cancer and I'm finished. My poor judgement could rob my boys of their mother and my husband of his wife. I can't do that. So...a month after chemo finishes I'll be having radiation therapy for 15 minutes a day, five days a week for five weeks.
Ok...it's late, time to sleep. xx
Autumn...my favourite time of year and its finally here!
We always kick off autumn with the annual Balloon Festival on the lawns of Old Parliament House and I am so grateful that I came home from hospital in time and was well enough to go this morning. I am really determined to keep to normality as much as possible during treatment. This morning's little outing was such a lift to my spirits...being all together as a family was wonderful, just doing our thing. Bliss!
There were only half a dozen balloons being inflated on the lawns this morning, the wind conditions meant that the rest of the pack launched from Mt Stromlo a short distance west, but there was enough activity and spectacle to amuse the crowd. I loved being out in the cool air, watching Jack and Harry in their element racing about, watching Hubby and my Mum wandering around after the boys with a coffee in hand and a smile on their faces. I felt alive again...so far removed from the past week.
Also bumped into my darling friend and her family which was icing on the cake. When the crowds started to disperse we wandered over to the large marquee run by the Lions Club and had a hot breakfast before heading home. Happy kids, happy adults on a lovely long weekend. Happy Autumn everyone!
WEDNESDAY: About 8am I asked Mum to take me to Canberra hospital. Hubby had to start back at work so she put the boys in the car and we headed off. Mum dropped me at the front entrance and went to park the car with the plan to meet me in oncology. By this time I was feeling very strange, staggering and swaying a bit as I shuffled past the lobby towards oncology. I must have looked wretched. Several people shot me concerned looks as I inched my way along the corridor. Oncology ward was at the end of a very long hallway and it felt like it kept stretching further out with each step I took. About a third of the way down I stopped and leant against the wall to rest. My body felt cold and I was dizzy. A nurse walked past then asked if I needed to sit down and I did...well actually I slumped into a heap.
My memory is a little foggy after that but I have vague recollections of being rushed down the hall to oncology in a wheelchair and suddenly being surrounded by a dozen doctors and nurses. Someone pricked my finger to take my blood sugar level which I was later told was 2.6. and that my heart rate was a bit out of whack and my hands and feet were like ice. I remember someone squirting a cold gel into my mouth several times, not being able to feel my hands and people asking me all sorts of questions which I tried to answer but I'm sure I was quite incoherent.
Apparently a few nurses from the chemo treatment ward came over and recognised me. The MET (Medical Emergency Team) who were first on the scene moved me to a bed in the chemo ward and continued treating me along with the resident oncologist for an hour before my body stopped shaking and the pain and nausea calmed down enough for me to talk properly. Meanwhile, my poor Mum was in the chemo waiting room with the my two boys, sick with worry. When things had calmed down, she was allowed to quickly come in and see me before taking the boys home.
Eventually I was moved to a room in the Oncology Ward. I was utterly exhausted but stable and finally, finally I felt safe and in the right place.
I spent four days in Oncology, three of those days on IV fluids and drugs. I managed to eat, drink and take oral meds and remained stable for the final 24hrs before being released to come home this afternoon. I feel human again. It is so good to be home.
MONDAY: My wonderful Mum came to our rescue again, flying in just after I came home from the ER. It was such a relief to have her there. We were all in need of some of her TLC.
TUESDAY: In the evening Mum took me to our local ER again to get some ondansetron wafers in the hope that the vomiting would slow down. Thankfully I scored the awesome triage nurse who saw me straight away, she shook her head in dismay when I explained the situation and immediately handed me a box of wafers and told me to go home and not waste another minute in ER. The vomiting eased up for about twenty minutes after I took the wafer so I went to bed. But before long I was throwing up copious amounts of dark green bile and my body felt like it was being burnt from the inside out. I was at my wits end, in complete despair. It was then, about midnight, that I decided that if I could make it through to morning I would go directly to the oncology ward and beg for help. I couldn't...wouldn't go to emergency again. It was a hell of a long night. I kept making little goals to get through, just twenty minutes more, just fifteen...things would get better when the sun came up.
Chemo has dropped me from a height and I've quickly discovered that I don't bounce.
TREATMENT DAY: Wed 27th Feb
Having the treatment was very relaxed and straightforward. Four hours sitting in a comfy chair, listening to music & audiobooks and chatting to nurses. I felt fine the whole time.
I came home a little rosie cheeked but felt ok...it was about an hour later that the nausea kicked in and kicked in hard.
THE FALLOUT: First week post treatment
THURSDAY: I went back to oncology for my Neulasta injection feeling really wretched after all night vomiting. The nurses took one look at me, popped me on a bed and hooked me up to fluids and IV ondansetron for an hour. I felt a bit brighter after that, had my injection and headed home with some sleeping pills in hand to help me through the next couple of days.
FRIDAY: The sleeping pills knocked me out and I have no recollection of Friday at all.
SATURDAY: The nausea & vomiting ramped back up again. I went up to our local emergency room late in the afternoon and they hooked me up for more fluids and ondansetron for nine hours. Poor hubby had to bundle our two sleepy boys into the car at 2am to bring me home. They fell back easily into deep slumber while I lay on the couch in the lounge feeling miserable.
SUNDAY: Just two hours after getting home my entire body began aching with bone pain. It was excruciating and I spent several hours moving about trying to ease it with no success. By mid morning I was shivering, vomiting and barely able to walk so Hubby took me to the Canberra ER. They admitted me fairly quickly but I fell into a sobbing heap on the floor as I hobbled through triage. The pain was unbearable. They got me onto a bed and pumped me with painkillers, more fluids and ondansetron. I couldn't stop shaking from the pain. The afternoon ER staff as best they could, tried to ease the pain & nausea. They ruled out an infection and my white cells weren't dangerously low. After four hours and a call to oncology they told me that the pain was a side effect from the Neulasta injection (which causes the body to make more bone marrow) and they were sending me up to the Oncology ward for the night. About 6pm the ward clerk got me to sign the paperwork to go upstairs and then the wait began.
At 6am there was still no bed for me in oncology and I had reached my limit. After 17hrs in that emergency room my stress levels were through the roof and the proverbial 'straw' that broke my back was when a maintenance man started painting the wall directly opposite my bed. The horrible nurse I'd put up with from midnight didn't seem to think that paint fumes were an issue. I gawped at her incredulously then felt real rage. I had been through enough! I was still in agony, still vomiting, hadn't slept, was alone, was afraid and felt completely unsupported. I told the nurse that I was going home and her response was a shrug of her shoulders and a curt "fine". The doctor ran up and told me that I should stay, she seemed surprised that I was upset. She asked me why I was still in pain and in disgust I told her to look at my notes since she hadn't a clue. The nurse demanded that I let her remove my cannula and then I hobbled out of the ER with tears streaming down my face.
It felt like I'd been put into a dinky row boat and set out to sea with no oars.
Hubby came and took me home and I spent the next two days feeling utterly wretched, bedridden and very reluctant to continue with chemo.
Thanks for all messages of concern and love. They mean everything to me right now. Chemo is knocking the crap out of me. Another 17 hours at Canberra Emergency last night. Unbearable bone pain Sunday and nausea still out of control. Trying to find right mix of meds to get me through it. Mum here to help again. Give proper update when more human.
I am shattered.
It's just past three am and I'm finally home from my local ER. It's the second time that I've been admitted for fluids since chemo. The first was the day after chemo when I went for my Neulasta injection and they kept me in oncology for a couple of hours to stabilise my nausea. This time I spent nine hours in the ED with two bags of fluids, painkillers & anti nausea drugs and I still feel like hell.
How am I going to get through five more rounds of chemo?
I don't feel brave. I don't know how my body is going to live through it all. I have never felt so alone or frightened.