Nasty allergic reaction

A friend on FB messaged me stating that she would send me her donor card number so I could ask the Drs to check she was a match and she added she would come on the next plane (she lives in Germany) if needed. I was so touched as I have never met her! I hope at least that my experience will encourage my friends and relatives to donate blood.

Today I had a terrible headache so nurse gave me fentanyl and IV Zofran for the nausea. It didn’t work so she added Endone and Lorazepam-still didn’t work so I decided to have a shower as my stomach was gurgling and thought the soothing sensation of the shower may help. However, when I stood up I nearly collapsed!

I asked the nurse to bring me a shower chair as I was concerned that I would fall over in the shower. At first the water felt soothing on my skin, however then it began to feel really hot and itchy. My cheeks were a bright red and my upper torso matched. I just couldn’t stop scratching!! My nurse said she would call the Dr so I waited. I felt very hot in the shower so wrapped a towel around me and lay down and waited. In the end I buzzed and a nurse entered and told me they were in the middle of night duty so the night staff would help me thread the IV bag through and she left without pulling the curtain back across, leaving me visible with just my towel around my top half! I just started crying and I dreaded the night nurse helping me as I had her last night and she was not friendly or kind and I just couldn’t face that personality today of all days.

Luckily the other nurse returned and fixed it for me. She told me that she hadn’t heard back from the Dr and had handed it over to the night nurses.She thinks it might be an allergic reaction to Allopurinol.  I still felt nauseous, in pain and itchy, despite her giving me some Endone and Calomine lotion. When I put the lotion on it felt like my skin was sizzling against the cool lotion! Weird sensation!

The night nurse was not helpful. She barely spoke two words to me so I asked the other nurse if the Dr had called back. Finally 2hrs later I had had enough and grabbed some stuff along with my laptop to escape to the patient lounge room. As I passed I asked the nurse if they had heard from the Drs and the grouchy nurse then came out and handed me a Phenergan. I asked her what the dose was and she snapped at me. ‘what was that?’ I re-iterated the question and she said 25mg. I sighed saying I had had 50mg of it already (realised later it was Endep) and then nurses weren’t impressed stating that they couldn’t give it to me then as it was a high dose (but they had already put it in my hand) I told them it wouldn’t make any difference and walked down the corridor. I just had to walk away as I was getting so mad! Went into the patient lounge room and just cried and cried.

 I had to keep slathering on calamine lotion so my arms and upper torso are a sexy pasty white! I have hibernated out here away from my rude night nurse as I just cannot face her right now. Am worried I will either cry or yell at her if I see her, or both! At least the pain and nausea has gone… now just have to wait for the itchy, hot skin to bid me goodbye as well ;)

Its difficult as being a nurse I expect to be treated the way I would treat one of my patients and so when I receive bad nursing care I feel disappointed, angry and frustrated. I have to say, as a whole, the majority of the nursing staff here are very kind and caring-which makes the nurses whom don't share in those characteristics stand out even more. I know we all have our bad days and working night duty is not easy but when the nurses tried to shrug off the night nurse's behaviour the following day by saying 'well that's night duty nursing for you' I shook my head and told them "well I work night duty but I still manage to give my patients a smile and ensure they receive pain relief, etc if they are in pain or unwell, so that is no excuse I'm sorry".

 

The 3rd cancer diagnosis

Today I felt quite tired so lounged around bed for a while before my shower. Its hard to adjust to the meal times here. I usually wake up around 7:30am, take my CML drug which you have to fast an hour afterwards so generally have breakfast around 8:30-0900. Here they serve breakfast around 7:15-30 so the meal lady was hovering waiting for my meal tray and I hadn’t even started eating yet lol! Started feeling nauseous so I figured a shower would help make me feel better.

Had the kindest RN (Emma) yesterday evening and again this morning. She normally doesn’t work on this ward so I was very glad to be blessed to have her as my nurse when she was working on this ward. She was more than happy to help and despite only having 5hrs sleep from working yesterday evening, she had a smile on her face when she entered the room. I gave her some of Dad’s shortbread cookies for her to try just as she was going on her lunchbreak. When she returned I asked if she liked them and she told me she had shown her workmates and they had decided to dig in so she only ended up with one. I had to laugh-EVERYONE loves my Dad's shortbread cookies!

My friend Becky’s parents Anne and Grieg arrived-it was a lovely surprise! We were chatting and then Dr Kennedy and his SHO walked in, so Anne and Grieg left the room. Dr Kennedy sat down and proceeded to tell me that they are 99.9% certain that my CML is in the chronic blast phase, which is also known as Acute Lymphoblastic Leukaemia (ALL) and I will require chemotherapy. I started to cry. He went on to explain that I would require 5 bouts of chemo and I would have this as an inpatient, so would be here on and off for 3 months or more.

He explained that this is incurable without having a Stem Cell Transplant (SCT) or Bone Marrow Transplant (BMT). I informed him that I had done research on both and didn’t wish to pursue either. He told me he thought I shouldn’t make a decision just yet.

We discussed my concerns of developing worse side effects and how I had wanted to move to Paris with my friend Lindemir. Dr Kennedy told me that it would be too risky to travel in my condition and said that I should be well enough to go to Paris in 12-18 months.

I just broke down. Tears of frustration, disappointment and anxiety of the unknown.  My friend Becky had heard about a treatment to help patients undergoing chemotherapy keep their hair (called 'ice helmets), so I enquired about using the ‘ice helmets’ and Dr Kennedy said he didn’t care if I used one so I will look into it. I will do whatever it takes to try and keep my hair!

Guess it’s a good thing we got my blood tissue typing done in December! I told him “See I told you I was unwell!” He stated that they had gone back over all my tests from the recent admissions. He noticed that my cough seemed to stop when my lymph gland became swollen. He said it looked like the last CML medication didn’t work so said that he would cease it next week when I commence the chemotherapy. I asked about the newer CML drugs and that I had heard some were available in clinical trial in Australia and he informed me that they were not available for people in blast crisis. So I will have a bone marrow biopsy to determine the tissue typing, so they can establish the correct chemotherapy to use. I mused about how painful the previous one was that I had at the PA hospital and he promised that I would get analgesia beforehand. Phew. I asked him if I would see him whilst I was here as I knew it wasn’t his month to cover the ward. He told me he would try and visit me each week. I am happy with that.

After he left Anne came back in and I burst into tears! She gave me a big hug and I told her how glad I was that she was there. She was great. She asked me how she could help me through this. My parents then surprised me by entering the room! So as the ward rules only let 2 visitors be in a room at a time, we went out to the communal patient lounge. I asked Anne to sit next to me whilst I told my folks what Dr Kennedy had said. Was glad I had thought to write it down on my iphone. My parents were obviously shocked to hear the news but didn’t really say much.

My parents friends, Jan and David then arrived, so Anne left to go rescue Grieg from downstairs and kindly gave me her contact numbers. Not long after my best friend Annie, Sean (her husband) and Aden (her son) arrived. Aden was proudly clutching a poster that he had made himself. It was very cute-he had made a beautiful rainbow out of pipe cleaners and taped a peg to it ‘so I can put it on my nose if I get any bad smells in the hospital” Also he had stuck a sad face sticker and smily face, telling me he hopes if I am sad, I became happy very quickly. Such a sweetheart!

Then he stared in deep fascination at my IV machine, line, etc. There was a deluge of questions.. what is this in your arm? Why is it taped to your hand? What is that? What does this button do? After trying to explain as best I can and then Aden asking the same questions again I told him that Aunty Cheryl didn’t touch the buttons but the nursing staff did, so if he had any questions about that he needed to ask the nurses. He paused for barely a second and then asked “what is this button for?” Everyone burst out laughing. Ah the mind of a child. He was probably the best medicine I could have been prescribed. Had a good one on one chat with Annie, and a big cry! She painted my nails so felt a bit less feral! By now more friends ,Jan and Warren had arrived so I asked Annie to suggest to everyone to sit outside so there would be enough seats for everyone. It had rained this morning but luckily we found dry seats. It was nice to sit outside and get some fresh air!

Tonight was Riverfire night in Brisbane. Every year crowds swarm Southbank to watch the jets fly above and see the spectacular fireworks display. Was feeling sad as it was yet another event I was missing out on. However, whilst we were sitting outside, we had the good fortune to see the Jets zoom in the air, around the hospital! They were incredibly noisy so at least we had sufficient warning that they were approaching. Saw them zoom past a few times so that was pretty exciting!

Got another lovely surprise in the visit of my cousin Lynden and his girlfriend. Jan C was very sweet  and took my laundry home with her. So lovely when people offer to do practical things for you. It truly is such a tremendous assistance! After a good chat with visitors, it was time for them to leave so I headed back to my room and immediately noticed the beautiful balloon flower arrangement that my Canadian friends Nick and Kathy sent me. Its STUNNING and so colourful!!! Happily put away goodies that Jan Shipton had brought me. She brought me soups, biscuits and a flavoured coffee and offered to come visit again. I told her I am trying to arrange for someone to be with me for the first time when I start chemo so am asking a few people in the hope that out of all the people I ask, someone will be able to sit with me. I know my folks will be able to, but they just don’t know what to say in those type of situations so would prefer someone else.

Nurse asked to weigh me to my chagrin. More disappointment set in when I realised I had gained 3kg-how on earth did I manage that?! Had barely settled back into my bed when I heard a patient in the corridor talking to a nurse about how he was going to go watch the RiverFire fireworks.. my ears pricked up. Another patient asked if he could join them, the guy said yes, so I piped up and asked if I could come to! The group was more than happy and it was a bit of a walk, but was worth it. They had found a good vantage point of the story bridge and we had a pretty good view of the fireworks display. Was so happy to see the fireworks and not miss out on Riverfire for another year. It was lovely to watch the fireworks-they were really beautiful. There was a small group of patients huddled against the hospital windows so everyone could see. One of the guys even played the radio commentary on his iphone, with a speak attached so everyone could hear.

I started to feel quite nauseated though and was very grateful that the lady in front of me in her wheelchair had an IV pole which I could lean against as was starting to feel weak! Made it back in one piece, chatting to one of the patient's about his journey and treatment, and he gave me some tips on managing chemo. He also explained the process for people to donate stem cells or bone marrow-very interesting.

 

Due to all the visitors I received today and then Riverfire, I haven't had the chance to properly absorb Dr Kennedy's news.

 

Admitted to hospital

It took a while to be seen by the doctors in the morning. When they asked me why I came to hospital I summed it up by showing them photos I took on my iphone of my lymph gland a few days previously and then a photo I that was taken the previous evening. This spurred them into action as it was blatantly obvious from the photos of the substantial swelling which had occurred in a matter of days.

The Drs managed to get my CT scan booked for that day so a nurse told me that I would have to drink a special contrast drink at 2, 2:30 and 3pm. At 1pm a different nurse came by telling me it was time to drink it but I looked at the clock and realised it was too early. At 1:15pm she came by again and worriedly exclaimed “oh but you haven’t had the drink yet” I pointed out the time and she replied “oh it isn’t 2pm??!” in surprise! I tell ya, it just shows that you have to always double check as nurses can make mistakes too (I can say that as being a nurse myself I am speaking from experience!).

So at 2pm I had the dreadful drink and immediately wanted to throw up. I found it easier to just scull it at once and then wash the awful taste with some juice. The CT scan was done without any drama. They informed me that with the dye that they have to inject had the side effects of a metallic taste in your mouth, warm, tingly sensation and the feeling like you have peed your pants. Such a strange sensation!

Afterwards the porter came to take me and stated “off to transit bay hey” and I replied “no I have a bed on Ward 5C”. He showed me his walkie-talkie with the booking text and sure enough it was incorrect. Good thing he asked! So I was admitted to the haematology ward, making it my third admission there in the past month. I was put in a double room and immediately noticed the beautiful balloons and letters and photos decorating my room-mates side of the room. It was so colourful and I had severe balloon-envy! The nurse explained my roomie was a young girl and she was on day leave. I was feeling terribly nauseated and waiting for the IV Zofran to kick in.

My folks arrived and were flustered regarding where to unpack my clothes. It took a lot of effort to inform them that it didn’t really matter where, as long as my clothes were in the drawers, etc! My Mum means well but lacks self-confidence so has to be given directions for EVERY SINGLE TASK… its exhausting when you are feeling unwell and just want people to take some initiative.

Later that evening I met my roomie. She is only sixteen-so young! I still cannot believe I am in hospital, having all these tests, everything is happening so quickly I haven't really had the time, nor energy for that matter to stop and process what is going on.

Really not feeling well...

The following morning awoke with a debilitating headache and felt incredibly nauseous. I forced myself to do my laundry as was hoping to spend a few days with my parents before the tests. Whilst watering my vegetable garden I was engaging in neck exercises which only seemed to make my headache worse. I swallowed some painkillers and anti-nausea tablets, and then tried to do some ironing whilst watching tv. I contacted my folks and my Dad kindly agreed to come and collect me and take me back to the Camp. However, suddenly I felt very weak and unwell so went to lie down. Moments later I began to  vomit and vomited about 4 or 5 times. I then texted my Dad and told him I was too unwell to go to Camp so not to worry about coming to collect me.

It was a long day. Any efforts to try and sip fluids resulted in the fluids being brought back up, making me quite dehydrated and weak. In the afternoon I felt like I had a fever so took my temperature. It was a low grade fever of 37.6C. Unsure what to do I texted Dr Kennedy whom stated to come in to the clinic. I was about to call a taxi when his nurse called me and told me that the clinic was understaffed and would be closed that afternoon so advised me to go to emergency.

I went outside to get some clothes off the line to take with me to hospital and the hot humid weather knocked me for six. Knowing that there would be a long wait in emergency to see a Dr and there would be no fans there, I decided to go back inside and lie down in front of the cool fan and wait until the evening until calling for an ambulance. My friend’s Mum Jan, came by to visit and very kindly put fresh sheets on the bed and helped me pack a bag for hospital.

Around 6:20pm I called the ambulance and one finally arrived around 7:15pm. When the paramedic learnt I was a RN he got me to do a check of the IV Zofran (strong anti-nausea medication) before he administered it. I laughed and said “what, are you putting me to work?!” and he replied “no free rides here” Once at emergency I was checked in and a young nurse probably in his early 20’s examined me and then consulted with a Dr. Upon his return he asked how I felt about PR Panadol!! I looked at him in disgust and he said “oh but you are feeling so nauseous and are in pain-this might make you feel more comfortable” Hmmmm, somehow the thought of a 20 yr old male inserting a suppository did not enter my mind as making Cheryl feel comfortable!!

So the offer of PR Panadol was politely but firmly declined and I was then given more IV Zofran and some Fentanyl for pain relief. That combination was working beautifully until a patient appeared in the corridor just outside my cubicle bay, yelling obscenities at the mass of security guards surrounding him. His voice kept escalating and he would not be subdued, along with my headache.

A nurse pulled my curtain across doing little to keep the noise away from me and also putting me out of the nurse’s vision. I was going out of my mind and couldn’t find the nurse call bell. It of course hung up far behind my hospital bed out of my reach as it always seems to be when I go to emergency. Luckily being a nurse I knew that there should be a call bell somewhere so after having to clamour in and out of bed I clutched it and pressed and waited and waited. In the meantime another mentally challenged patient decided to try and make a run for it and had the security staff yelling at her and her yelling back in retaliation. It was the final straw so I was in the process of taking my IV bag off the IV pole and going to try and find the quietest corner I could, when a Dr entered the room.

She ordered more Fentanyl and explained that the Psychiatric Evaluation Unit was full hence the patients in the corridor kicking up a riot. She then proceeded to ask me a zillion questions and my head was pounding! She apologised for asking so many questions stating that my hospital notes had been misplaced so she had no information about me. It took a long time after her consult to get admitted. Finally at 2am I was taken to the turnover bay which was like a tranquil oasis. The nurses were lovely, making me a cup of tea and showed me how to work the free tv. It was even a flat screen plasma model!! Was impressed! Finally some peace after a long, exhausting day!

 

Brief cancer history

So where do I begin? My name is Cheryl, I am 36yrs old and have had the pleasure of being told I have had cancer three times in my life already!

In 2007 after being unwell for a long period and being told by my GP that "you just had a virus" I discovered I had a very rare aggressive form of thyroid papillary cancer. It was rare because the cancer had spread in a downward direction near my heart, instead of the usual outward direction. Due to my ENT surgeon having to co-ordinate his busy schedule with a cardio-thoracic surgeon's busy schedule, it meant the only date they could operate before my ENT surgeon's 6 week holidays was on my 30th birthday! I had four surgeons working on me and the operation took 7 hours.
I woke up in ICU screaming in pain. It took weeks for the Doctors to diagnose me with neuro-pathic pain. For nine months I was in excruciating pain, waiting for the severed nerve's roots to die. It felt like a cigarette lighter was burning against the scar and my chest felt like it was on fire. Neuropathic pain is very subjective. Some people have it for weeks, months or years. I only started to get some relief when the Community Palliative Nurse came to visit me at home. I was on enough painkillers to sedate an elephant, yet got no 'buzz', nor complete relief from the pain. Sleep was a good escape. Many days it was so bad I just wanted to die, but somehow I managed to make it through.
Thyroid cancer does not respond to chemotherapy so you have radio-active isolation treatment, where you are given a radioactive tablet to swallow and kept in isolation until you are no longer radioactive. I was terribly nauseous and incredibly lonely. Luckily I had responded so well to the treatment so the Oncologist reduced my treatment-I only required two radio-active isolation treatments and no longer required radiation therapy-I was thrilled!

 

In 2012, pre-op blood tests for a minor procedure indicated that I had a high white cell count. Days later, I had to undertake a very painful procedure called a bone marrow biopsy (where a needle is inserted into the hip bone to extract bone marrow). Within a week I was diagnosed with Chronic Myeloid Leukaemia (CML).

The hospital had a shopping mall opposite and I remember sitting on a bench in the shopping mall for two hours in complete shock. This was more daunting as it wasn't like I could chop out my blood and recover like my thyroid cancer experience. Unfortunately, this cancer I would have for the rest of my life and have to keep it in check with daily medications. At present there have been 3 medications for CML in Australia. These medications were different to chemotherapy in that they were specifically made to target the leukaemia cells so didn't kill off the 'good cells', yet the medications came with several nasty side effects. I was unfortunate to suffer nasty side effects for 2 of them and so all my hope was pinned on this last medication. My CML journey was filled with numerous trips to emergency, almost weekly illnesses and fortnightly visits to see my Haematologist in a desperate bid to get my CML under control. CML progression is marked by a blood test called PCR-abl. The desired range is 0.00 and at once stage my PCR was 203%!

 

On Tuesday, Sept 24th, 2013 I saw Dr Kennedy. He entered the room clutching papers and excitedly proclaimed “your blood tests are all within normal range” He then stepped closer to me and stopped mid-step when he noticed the large golf-ball sized swollen lymph gland in my neck and asked “how long have you had that for?”. I replied that it had been about 2 weeks and I had been to my GP whom told me I just had the flu.

Dr Kennedy then examined my neck and surrounding area. I mentioned that I had noticed another swollen gland in the area near my left collar bone. He stated he thought the swollen lymph gland in my neck could be a blocked salivary gland and that he was concerned that the other swollen lymph I had discovered was not on the same side as the two glands are connected. He then did a quick check of the other main lymph glands in my body and told me he couldn’t find any other swollen glands and to wait there and left the room.

Moments later he brought in a colleague whom he introduced as the Cancer Care Co-ordinator. He dictated to her the tests that he wanted booked for me. She asked me if I had any plans that week and I informed her that I had planned to spend some time with my parents. Dr Kennedy stated that he didn’t want me to wait a week to have the tests done. I was shocked as he is normally one to ‘wait and see’ so I could tell that he was quite concerned which of course then made me worried. After making phone-calls the co-ordinator stated that the earliest that the tests could be undertaken was on Friday. I asked Dr Kennedy what was wrong and he was rather evasive saying he wanted to wait for the test results. I had an iron infusion and then took a taxi to my chiropractor as had been battling a migraine all day. My chiropractor did an adjustment and I then took a taxi home. I went straight to bed with an ice-pack. To be honest I wasn't too concerned about the swollen lymph gland as often this would become swollen when I was run-down or unwell after having thyroid cancer.