Christmas

Yay!! I stayed out of hospital for my birthday and Christmas!! I had chemo on Wednesday 19th December. This time i was much better, didn't get any chest pain, so that was great. I woke up Christmas morning feeling a little off, but had some breakfast and felt better. 

Over the last 2 months, i have received some very generous gifts from everyone, from flowers, journals, scarves, beanies, willowtree figurine, food, vouchers, money and everything else in between. I have been so lucky to have some amazing people support me through what no doubt will be one of the toughest things i will have to face in life. Having all the support has definitely made it a little easier. A special mention needs to go to a group of beautiful ladies whom most I've never met. You all are really one in a million, without you all I'm not sure how i would cope. I know that if i need to vent, no matter what time of day, there is always someone around to talk to. So from the bottom of my heart, thank you.  

My hair is still falling out.. slowly (I am lucky i have so much of it). I am dreading the day that I will need to shave it, it will be a very hard thing to do. I have my wig here ready to go. Its a pitty its going to be summer, otherwise i would just wear beanies and cover up. 

Next week i have a CT scan, a PET scan, Chemo and a meeting with my doctor. Hoping the meeting brings good news.

PICC dressing

I am happy to say that i have managed to stay out of hospital for 14 days!!! Although i did have to go to the hospital today to have my PICC line dressing changed. I was a little worried about going because last time i went to get it changed was when they realised i had a temperature and i was in hospital for 9 days! I have been feeling okay the last few days, today however i feel really tired and drained, it could be because it was 38 today though! I am still on the 2 Clexane injections, i am not sure when this will be stopped, lets hope soon because my tummy is getting quite bruised! 

This is what my PICC line looks like when they take off the dressing to change it!

Where has time gone...

So much has happened since i last wrote on here, so ill start from the start!

I had my meeting with Professor Birrell on the Tuesday 9th October and they were right he was a nice man. He said from what he could see from my ultrasound he wanted to get me straight into hospital that day. So Sam, Sam's Mum and myself had to wait around while they organised a bed for me. When they had found one i was told to go into the hospital and have a CT Scan first so they could see if there where anymore lumps. I threw up in the scanner when they put the contrast into me (it was horrible). When this had finished i went and checked in and went upto the ward and got my room. I met with the doctor that would be looking after me and she explained to me that they thought i had Hodgkins Lymphoma and all the things they would need to do to get a diagnosis. I went back to my room and then they told me that i could go home and get some stuff and come back. Later that night they told me that i could go home for the night as they wouldn't be doing any tests and to come back at 8am the next morning Wednesday 10th.

Wednesday 10th. The doctors came and spoke to me more and told me that i would be having my biopsy on my neck and a bone marrow biopsy the next day. They explained that i would be put under so that i was still awake and could talk but wouldnt know what happened when i woke up. This all freaked me out, up until then i had never had a surgery before, had actually never spent time in a hospital. I had to fast from midnight and couldnt have any water. This was really hard as i was always thirsty at this stage. Sam was staying with me in the hospital.

Thursday 11th. I woke up knowing today was the day of my surgery. I had a shower and put on a hospital gown and waited for them to come and get me. Around 9am a orderly came and got me and took me down in my bed. I had to wait in the waiting area for about 30mins before i was taken into theatre. While i was waiting in the waiting area they gave me a local anaesthetic in my right arm (this hurt like hell). I think this was where they wanted to put a cannula. She then told me that it didn't work and she would have to do another one! They wheeled me into theatre and i was still crying. Last thing i remember is seeing a lot of people standing around and the doctor saying this will make you sleepy, i looked up at the lights and that was it. About 1pm i woke up in recovery not remembering a thing. I had to wait there for about 30mins so they could monitor me then i was taken back to my room. Mum and Dad where there by that stage. Mum, Dad and Sam where getting worried as they thought i would be back ages ago. Sam asked a doctor where i was and they said they had to put me under more then they thought they would because i was stressing so much, so this made my recovery time longer. I have about an 8cm scar across my neck from the biopsy, i have been told this will fade and you wont be able to see it. My back was sore for about a week where they did the bone marrow biopsy. I wouldn't get my results back from the tests for another 2 weeks. I went home Friday 12th.

This was taken when i got back to my room from having my biopsy.

The spot on my back where they did the bone marrow biopsy!

Thursday 18th i had a PET scan at the Royal Adelaide Hospital. I had to lay in a quite room for about an hour. They injected me with a small amount of radiation, had to drink a glass of 'water' and then went into the PET scan. The scan took about 40 mins. I then went home.

It was now a long wait until the 26th of October until i could get my results back from the biopsies and finally have a diagnosis. It took them 3 weeks from when i saw the doctor at Noarlunga originally and he told me i had lymphoma for them to officially diagnose me. 

26th October Sam and I headed off to the Flinders Medical Centre to meet Dr Coghlan. We met Sam's Mum there and she came in with us. We were all hoping and praying for good news. I was more worried that it had gone into my bones and i would now have Leukemia too. We sat in the waiting room for over an hour waiting and then it was finally our turn. He explained that i had Stage 3 Hodgkins Lymphoma and that meant it was on one side of my body in 3 parts (neck, chest and spleen). He went onto say that it WASNT in my bones!!! He explained a lot of other things and talked to me about what Chemotherapy drug options they had to treat me. ABVD was the most common one and had been around for 40 years. This is the one they would try first and if this one didn't work they had Escalated BEACOPP. The BEACOPP was a lot stronger and therefore would make me infertile. He talked to me about harvesting my eggs and freezing them. He gave us the weekend to decide what we wanted to do and told us to come back Monday morning. He also told me that i had the option of where i wanted my treatment done, whether that be at the Flinders Medical Centre, Royal Adelaide Hospital or the Queen Elizabeth Hospital. He had arranged for a Youth Cancer Support person to come and talk to us. Her name was Sharon and she explained that there was funding from charities to help pay bills and also help pay for a wig. She told us about a Youth program at the Royal Adelaide Hospital. There was a youth chemotherapy room that had a playstation in it and that if i was admitted to hospital i would get a room by myself. This all sounded great so we decided that we would go with the RAH even though it was further away. 

Monday 29th October we headed back to see Dr Coghlan with our answers. We told him that we would be going with the RAH and that we didn't want to get eggs harvested. We felt at this stage in our lives it was the right decision for us, who knows whether in 5 years time it will be or not but thats the risk we are willing to take. We felt it was best to just get on with the treatment and not delay it anymore. We felt hopeful that the ABVD would work and i wouldn't have to go onto the BEACOPP chemotherapy.

Friday 2nd November i met my new doctor that would be looking after me, his name is Dr Michael Osborn. Sharon the Youth Cancer worker was also there. He wanted me to explain everything that had happened in my own words then we talked about the chemotherapy and he said i would have a 90% chance of beating it. He told me that i would need to get a PICC line inserted in my arm and explained that it was a small tube that would start in my arm and go all the way into my chest through a vain, i asked him if i had to have this as i didn't like the sound of it, he said i didn't but that it would be the best option otherwise i would need a cannula put in every time i had chemo and that there was a chance the chemo drug could burn my skin. The Dr and Sharon took me up to the Chemotherapy ward to show me what it was like and showed me someone that had just had a PICC line put in. He said it didn't really hurt and took about 10 minutes to do. I left there with a few tears, it was all very confronting. We went back to the Dr's office and spoke some more. He gave me my time for my first chemo, which was Wednesday 7th November at 3:30pm. That morning at 11am i would also have to get my PICC line put in.



Wednesday 7th November i arrived at the hospital to get my PICC line put in. We had to wait over an hour to be seen. I took a pre med to help calm my nerves. I went into the room, they gave me a local anaesthetic (i don't remember this one hurting as much as the first one i had for my biopsy, maybe because i had the pre med or maybe because it was in a different part of the arm) and then he inserted the tube into my arm. I had two dangly bits hanging out my arm (this is where they would put the chemo into) that they fastened with dressings so it couldn't get ripped out my arm. I had a hour or so to spare so went to Sam's parents place and slept on their lounge until it was time to go back to have my chemo. I got back to the hospital for my 3:30 appointment and went to the Day Oncology ward, checked in and went and had a seat (the playstation room already had someone in it, so i had to sit with everyone else). They gave me 5 anti-nausea tablets to take, i explained to them i had trouble taking tablets and that at least 2 of them i wouldn't be able to do. They gave them to me in IV form. I felt fine after having the chemo. The next day Daniel and Dom came down to stay the night. We went off to the hospital to choose a wig and do a few other things, i had more energy that day then i had for weeks. Friday and Saturday i was the same. Sunday was when i hit the low, i had run out of the steroids they gave me to stop the nausea. I got out of bed to have a bath as Sam's parents were coming for lunch, i stayed in the bath hours and struggled to get out, when i did i felt really weak so came back to bed and spent the rest of the day there. Up until this stage i had lost 20kgs in around 6 weeks. 


Monday 12th November Mum came to stay the night and look after me. I was supposed to go a Look Well Live Well Beauty workshop but wasn't feeling up to it so mum rang and cancelled it for me. Mum did lots of ringing around for me. She rang the doctor to see if there was anything else i could take and he faxed a script to the Pharmacy so she could pick it up. She went to the shops and got me some zooper doopers to keep my hydrated also got me Hungry Jacks for lunch. The next day she did vacuuming for me :). I was really sad to see her go :( she had been such a big help when i was feeling yucky. 


Wednesday 14th November i went back to the hospital to have my PICC line dressing changed. While i was there i said that i had mild chest pain so they did a ECG and that came back fine. They listened to my chest. They tried to call my doctor to see what he wanted them to do but he didn't answer. They told me i could go home. I got to the lift and was about to step in when a nurse came running up and said that they wanted to do my ob's before i went home. I went back and sat in the seat and they took my temperature, turns out i had one, so that changed everything. It was 38.2. They put me on IV anti-biotics and told me that i would have to stay in hospital. I cant remember the day but they came and told me that my blood was really low sitting at 77 and that i would need a blood transfusion, she explained all the risks and it made me really scared, so scared that i didn't want to have it! They were going to give it to me that night but gave me the option of waiting till the morning so i could speak to the doctor again. I said that i would wait. The doctor came back in the morning and told me that it was a 1% chance of any of the things happening, i felt more comfortable then, still not 100% though. They gave me 2 bags of blood that day over several hours. Turns out my blood type is B+ which is quite rare. I stayed until the 22nd so 9 days. They kept me on anti-biotics for the whole time i was there, also fluid for the first couple of days. I had my second lot of chemo on Wednesday 21st while i was still in hospital. Hayley and Lana came to visit me while i was having chemo and brought in McDonalds for me. After the chemo finished i started to feel really sick and vomited twice. I don't think this was due to the chemo, but due to eating McDonalds while i was having chemo! I went to sleep and felt okay when i woke up the next morning. They gave me oral anti-biotics and said i could go home. We went back to Sam's parents house and stayed there so there was someone around me all the time. Saturday 24th i started having chest pains, we didn't think much of it and just put it down to indigestion. I was still having them on Sunday so around 7pm Sam's mum decided it was time to call a ambulance and get me to hospital to be checked out. Mum and Dad also came down and seen me in emergency. I went off for a CT scan to rule out any blood clots in my chest, i had a massive panic attack before and while i was in the scanner. I was taken back to the emergency ward and waited for the doctor to look over my results from the scan and to find out if i could go home or not. The nurse came in and said the doctor wouldn't look at them until the morning and that they would find me a bed to stay overnight. Mum and Dad left around midnight and Sam left around 1am. I got taken to my bed at 2am. This time i was in hospital for 4 days. In this time i had a chest x-ray, which came back clear. I only had chest pains for another day while in hospital and then they went away. I had a ultrasound on my arm with the PICC in it to see if they could find any blood clots. They found 2, which meant they had to take out my line and would have to put another one in the other arm. Taking out the line didn't hurt and they just did it in my bed in the ward. This also means that i have to be on clexane injections twice a day to thin my blood and stop the blood from clotting, these are done in my tummy at 8am and 8pm by a nurse that comes to my house. I got to go home on Wednesday 28th.


Tuesday 4th December i returned to the hospital to get another PICC line put in my left arm this time. The only thing that hurt was the local anaesthetic. I didn't have a pre med this time as i knew what i was in for. 

The second PICC line i had put in my left arm.

Wednesday 5th December, i had a meeting with the doctor (not my doctor as he was on holidays) before my chemo. They seem to be happy with how everything is going and said that my bloods look good. I asked if she could see if the lump in my chest had gone down as i had the CT scan when i came into emergency. She had a look and said it had shrunk! I can definitely tell that the one in my neck has shrunk! So all good news from her, which is great! I then went and had my chemo. I didn't eat anything this time until after! I met another girl around my age that has Hodgkins Lymphoma also, she was in having her first treatment of chemo. As much as it sucks and i know what she is going through it was nice to know there are other people like me! While i was there the nurse told me i would have to have another injection 24 hours after each chemo. It is to help build my immune system to hopefully prevent any infections and temperatures and to stay out of hospital! The needle is worth $1000!! the nurse that comes and does my night clexane injection will also give me this one. I am also having 2 blood tests a week on Mondays and Thursdays. 

Thursday 6th December. I woke up feeling a bit sick but had my medication and feel better now :)! I had a blood test today.