Ouch and another phone call from the RAH

I woke up this morning with my back and top of my legs killing me... I guess this is a good thing because it means that my white blood cells are rebuilding themselves, but not good for the pain. It has got better through out the day though so that's good. I have also felt a little funny in the chest, but that seem's to be a regular thing at around this stage in my cycle. 

The Oncology Day Centre rang again today to tell me that my potassium levels are too low so I need to start taking my liquid potassium again. My level was 3 and it should be between 3.7 and 5.2. Not looking forward to taking this again as it taste's like cleaning product!! 

Hmm screw you white blood count!

I had day 8 on Monday 6th. All went well, blood counts came back good. I found out that the tingling in my fingers is actually from the Vincristine IV chemo I have on day 8 and not the tablets I am on. The nurse told me to mention it to my Dr and if things got bad with it they would look at altering the amount i got. Monday night I had really bad indigestion, took some mylanta and it seemed to settle after a while. Tuesday night I had it again, took some mylanta and went to bed. Wednesday night I took some mylanta after tea and before i got any symptoms, seemed to work!

I had a blood test this morning (the nurse comes to me), its great because I get to stay in my PJ's :) At 4pm the Oncology Day Centre rang and left a message on my phone saying my white blood count is sitting at 0.20 so I am highly susceptible to infection! Normal count should be between 4.0-10.0! So i am not even registering 1! I had plans to spend the weekend away in Mannum this weekend and now I can't go because I can't risk getting an infection!

Red blood count is 91 so no blood for me this week!! :) 

I am sick of everything being put on hold! Why can't it be easy? I guess cancer isn't easy, but some days I feel I have the rough end of the stick and am dealing with a lot more then other people with it. I know it could be worse and there are other patients far worse of then me, but still! 

Adelaide Relay For Life 2013

Saturday 4th May 2013

I had the privilege of being involved in my first ever Relay For Life, and what an experience it was. 

A group of ladies who I have mentioned in this blog before all banded together to pull it off! Over the last few months we have all been fundraising and trying to get as many donations for our two RFL teams "Quinzi's Sisters from other Misters" and "Fish kisses for Finn" to raise money for the Cancer Council SA! We raised a massive combined total of $9034.19!!! 

In April we held a fundraising movie night where $5 from each ticket sold went to our fundraising tally. I also got in contact with lots of companies asking for donations towards a raffle that would be held on the night. The support from the companies that donated goods was just amazing! We sold our raffle tickets for $2 each or $5 for 3. The whole night was a great success and we raised over $700 on this night alone.

The Adelaide Relay For Life alone raised $178,000! 

The relay started at 2pm Saturday and went right through until 9am Sunday! I stayed from 1pm - 11:30pm on the saturday and then went home to my nice warm bed because it was too risky for me to be out in the cold. 

It was an amazing experience and I can't wait to do it again next year! 

Kelly, Finn, Anais and Myself 

Me, Shelley, Kirsty and Keryn

Selling scones and soup to raise more money

Off on our "survivors/carers" lap

Our two teams :)

Some lovely ladies and myself :)

Round 4.. half way!!

Monday 29th April 2013 - BEACOPP Round 4... Half way through!

Sam took me to this appointment, we arrived at 9:30am and went off to the waiting bay, it got to around 10am and the nurse that would be looking after me that day came and told me that they were still waiting on my chemo to be made up by the pharmacy as my script had been taken down late and hopefully it wouldn't be too much of a wait. He asked how i was feeling and I said that I was already feeing sick at the thought of having the chemo as it had previously made me sick. 

Alan a man that works with Dr Osborn came up and seen me and told me that he was going to go and make my appointment to have my gated blood pool scan on my heart. He went off and came back and said it was going to be on Thursday 2nd May 2013 at 9:40am. I asked him if Dr Osborn still wanted me to get an ECG done today because i couldn't remember if he had changed his mind on Friday when i saw him, he went and called him and came back and said that it was fine to not have one as Dr Osborn had looked over the results of my last one and my heart was beating in rhythm just fast.

At 11:30am my chemo finally arrived. I got taken into the smallest chemo bays. They gave me half a lorazapam to help with my anxiety and calm me down. The nurse said to make sure I had my blood test on Thursday as my haemoglobin at my last blood test on Friday was 85. I had my 3 bags of chemo and went home. No vomiting once again!! 

Day 2 - Tuesday 30th April 2013 - Arrived at the hospital 9am for chemotherapy, all good. Sam took half the day off work to take me.

Day 3 - Wednesday 1st May 2013 - Arrived at the hospital 9am for chemotherapy, all good. Sam took half the day off work to take me.

Thursday 2nd May - Sam's mum took me for my gated blood pool scan at 9:40am. I got in straight away and the took me out the back and injected me with a tracer, told me to sit in the waiting room for 20 minutes and they would come back and get me, take some blood, add radiation to it and then make we wait another 20 minutes and then inject my blood back into me. I then had to lay in the scanner for 10 minutes while they took a video of how much blood my heart was pumping. Then i was free to go. We went and had lunch and then to the IMVS clinic to get a blood test. We then went and done some shopping at Kmart, which totally exhausted me! Penny dropped me home and i had a nap. 4pm my phone rang and it was the oncology day centre at the RAH telling me I needed to come in tomorrow (Friday) for a blood transfusion as my haemoglobin was now sitting at 81. I asked her how many bags i would need and she said probably 2 but would speak to the doctors. I had to be there at 9am! Having blood is one of the things i hate the most, I think its the thought of someone else's blood going in to you that I don't like. I guess i better get used to them, they seem to be a regular occurrence these days!

Friday 3rd May 9am. Mum came down and took me to my appointment. We arrived and they told me i would be having 2 bags. Each bag costs $330 and takes 1.5 hours to put through. Including these 2 bags, i have now had 7 blood transfusions!! We left there about 1:30pm. 

So everyday this week i have had to be at the RAH at around 9am, i am so not used to these early mornings!!

Feelings...

At age 25 I would have never have thought cancer would be a word I would speak nearly every single day. Until the day I was diagnosed I never knew Hodgkins Lymphoma existed. The last 8 months have been an emotional roller coster to say the least. I have my days where all I do is cry and ask the question "why me?", tell myself "I can't do this anymore", "I don't want to do this anymore" and "I want to give up"! Somedays I feel so alone and it's hard waking up every day wondering how you are going to feel or whether you are going to get a temperature and have to go back to hospital. Not only is my body physically drained from this, I am emotionally drained too. 

I know my life is only temporarily put on hold, but its hard seeing peoples lives going on around you. People going on holidays, out for dinner, to concerts, parties and just having fun. I am limited in what I can do or where I can go. Its winter now so everyone has colds, therefore I can't be around them, if its cold and wet outside I need to stay indoors where its warm so I don't catch anything. 

I really can't wait for this all to be over and for my life to go back to some sort or normality. I know my life will never be "normal" again and there will always be that fear that I am going to relapse but it will be nice to wake up and feel healthy again. 

Results are in....

I had my appointment with my oncologist on Friday 26th April to get my results of my PET scan. Last scan showed a reading of 8/9 for cancerous activity in my neck and this one showed a reading of 2/2.2 so he was really happy with that. He also had to work really hard to feel the lymph nodes in my neck :) 

I spoke to him about my heart rate being 120 when rested and then going up to 180 when i walk around. He is going to order a Gated Blood Pool scan which is a test where they inject a small amount of radiation into you and then measure the amount of blood in the heart during different parts of the heart beat. He wanted a ECG done but i told him i had one done a week ago, so he was going to look at the results from that and then speak to a cardiologist to se if there was anything they could do. My heart has been fast since i first went to the doctor with all the symptoms i had. My doctor didn't seem too concerned as all the ECG's i have had have come back saying that it beats normally just fast. 

What a crazy 3 weeks!

Where do I even start?? So much has happened in the last 3 weeks! 

Easter Sunday 31st March - I had been taking my temperature on and off all day as I always do and it had been hovering around the 37.5 mark, at about 9pm it hit 38! I had a bath and started packing my bags to head off to emergency. We got there at about 10:30pm. I got taken straight through and hooked up on to monitors, my heart rate was 180 so i got taken straight off to resus (they thought i was going to die)! My normal heart rate since being diagnosed is about 120 (most peoples is 60). They did a chest x-ray and started me on iv anti-biotics. I was in resus for about 30 mins until my heart calmed down to its "normal" 120 beats and then i was taken into a room to wait to see the doctor. I waited.. and waited... and waited.. FINALLY at about 7am they came to see me! Sleeping in emergency is pretty much impossible so i think i had about 10 minutes sleep. At around 9am i got taken up to a room where i could finally try and get some sleep. This time i was on C6 and had a lovely single bed room with own shower, toilet and views of the botanic gardens. Other then my temperature this time i had no other symptoms. 

Wednesday 3rd April - I was due for day 1 round 3 of chemo today but as i was still spiking a temperature it was delayed. I had a CT scan today also to check for a throat or sinus infection. This is the results....... about a 50% reduction from the tumours in my neck!!!! They didn't scan my chest and spleen so unsure if they have also shrunk but i would presume so! 

Results from CT scan

Friday 5th April - The doctors gave me the option to go home today and come back monday to have my chemo or have chemo today and stay in until sunday. I chose to have my chemo today and stay until Sunday. I stayed because of how sick day one normally makes me. This time they gave me something different to try for the anti-nausea, it was given by IV 30 minutes before the chemo started. I had my chemo while i was in bed. When it was over I laid there listening to music trying to keep my mind off if i was feeling sick or not.. the vomiting never came! So i am hoping that whatever they gave me works next time! 

Saturday 6th April - I had day 2 of chemo today. I also had one bag of blood as my haemoglobin was low. 

Sunday 7th April - Day 3 and home time :) It was good to go home after 7 nights in hospital! I missed my dogs!

Being home was only short lived.....

Monday 15th April - I had been feeling pretty crap the last day or so and as always was taking my temperature regularly. 11am and it hit 38 :( So i called the hospital to let them know i was coming in, called Sam to come home from work and packed my bags. This time my heart rate was 150, still got taken straight to resus though! Had a chest x-ray and started on IV anti-biotics. Was then taken to a bay in emergency to wait for the doctor. Thankfully this time i didn't have to wait as long. He came and checked me out and said they would admit me and i just had to wait for a bed. This took about 2-3 hours. This time i wasn't so lucky and had to go to B6 which is a ward for Radiotherapy and Palliative Care Patients (pretty much all OLD people that can't look after themselves)! I was taken to bed 3 and had to share a area with 2 other old ladies and a old man. 

I was hooked up to 2 IV pumps until 4am in the morning :( I needed 2 bags of potassium as my levels were too low and also 2 blood transfusions. 

Friday 19th April - Finally got to go home! 

Sunday 21st - I had my second trip in an ambulance. I had been having weird feelings in my chest since thursday. I had mentioned it to the doctors then but they didn't seem concerned. I was worried that i had a blood clot as i have previously had one. Mum and Dad had come down for lunch and they were just about to leave when i decided we should call the ambulance to get me checked out. Mum called them for me. They came and checked me over, my heart rate was high (like normal), but oxygen levels and blood pressure were good. They took an ECG of my heart to make sure it was beating ok and it was. So off to Flinders Emergency i went. They also took me off to resus as my heart rate was high. They took some blood to check for blood clots and to check my heart, these all came back clear. I had a chest x-ray this also came back clear. My oxygen levels and blood pressure were still good, so they had no indications of blood clots. The fact that the pains were on and off and only lasted a few seconds they didn't believe it was anything to worry about, so sent me home. I was there for about 2 hours all up. 

Monday 22nd April - I had a PET scan to check to see if there is still active cancer or not, i will get the results back friday when i see my oncologist! Fingers crossed for good news!!