It's hard, at the end of the day….

I have come here many times to write a new blog but just end up sitting here looking blankly at the screen not knowing where to start or what to write!

I am not sure how I am feeling since finishing up all my treatment, if I am being honest as I usually try to be on here, it is pretty scary! I may have mentioned in a previous blog, i can't remember. But whilst you are on chemo you have the comfort of knowing that the cancer is being killed or kept away. Now i am off it the scary thoughts keep rearing their ugly heads and the fear and anxiety seem to creep back in every now and then. I know this is normal for someone who has been through something like I have so it doesn't worry me, it can just get a little annoying sometimes when you are going about your day and something will jump out at you and remind you of what you have been through or what your future may hold. At the end of the day, its hard. I fought something that tried to kill me and those memories won't disappear overnight. 

I have started seeing an exercise physiologist to help me regain my strength. He has been fantastic and I have noticed a great improvement even in the few short weeks that I have been going. Before I started seeing him my joints and body would ache any time I stood up and moved but now it is much better. I see him 2-3 times a week for an hour at a time. We do things like weights, treadmill, bike etc. 

On Friday 1st November I had my first clinical checkup with my Oncologist. It felt weird going back to the hospital after not having to go there for a month. He checked me over and didn't see or feel anything that he was concerned about! My next check up with him is 6th December. He said that he feels that I have transitioned from chemo well. 

Saturday October 26th I was asked to participate in the Candle Light Ceremony in the Murray Bridge Cancer Council Relay For Life. I lit the candle of the present. They have 3 candles that signify 'The Past, Present & Future'. It was an honour to be asked to do this in my home town in front of my family. 

Doing a lap with our candles

As above

During the ceremony

The band playing

Me with my candle (in the middle)

I also got asked to be the feature story in the latest Cancer Council bequest brochure and letter that accompanies it. I felt very privileged to be asked to do this and it makes me feel like I am doing some good out of a horrible situation and I hope that after reading my story people consider leaving money to the Cancer Council in their will.

The brochure

I have been busy planning fundraisers for the Cancer Council through Relay For Life. This will be the second Relay For Life I have participated in, it is great fun but also a lot of hard work! If you would like to donate here in the link: Relay For Life Fundraising Page  

I am also in the middle of planning a holiday to Tasmania for the start of next year! It is great being able to plan things! Life will never be the same again but I am trying to learn to live with the life I have been given and I am incredibly grateful that I am still here today to be able to share my story. 

I know a lot of people who have been through something like I have say that they now look at the world in a whole new light but its true. I now see what is important and what is not. I make time to just sit down, relax and watch the world go by! Life is to fragile and short to worry about the small things. I will always take time out for me and look after myself as no one can do that for you. Life is what you make it, have fun, be crazy and don't care what others think about you. 

I hate that I got Cancer but it showed me how to appreciate life as tomorrow is never promised and life can change or be taken away from you in a instant. Its also led me to some amazing people who I will be friends with forever. I believe I have been given a second chance at life and I am not going to waste it!

This song was sang at my very first Relay For Life that I attended in May this year. I was in the middle of treatment and had a blood transfusion the day before. I was standing with an amazing group of ladies in a massive crowed! As I looked around there was not a dry eye in the crowd! Whilst it makes me sad it always reminds me of how far I have come! 

  

So it seems this time I didn't have trouble finding something to write about! Until next time xxx

Picc removal

In my last entry I forgot to mention I finally got my picc line out! I specifically made my picc dressing appointment after my results appointment in the hope I would be able to get it out! 

With one deep breath it was pulled cleanly out! I didn't feel a thing. I asked the nurse if I could keep it! She joked that it might make some horrible science experiment In years to come lol! I need some sort of memory of what I had inside me for the last 11 months! I gave it to Dad, told him to put it with my hair he has lol! The part that ran from my arm into my chest is approximately 30cms long, the part on the outside of my arm, about 16cms long! Although annoying, it saved me many a jab and I don't regret getting it at all! 

                            

All the nurses in the oncology day centre were sad but happy to see me go! The receptionist was exceptionally sad! I had become friends with everyone there in the last 12 months! I am not sad to see the back of that place but am sad to say good bye to the lovely people I met! I promised Nikki the receptionist I would pop back in and say hello next time I am at the hospital! 

Chemo nurses are amazing, they help you through a very difficult time in your life! I will never forget the love and support they gave me! We shared jokes and stories and had lots of laughs together. 

I may have taken the long road but I got there in the end!

This is a post I have been waiting to write for a very long time!! Today I can announce I no longer have cancer!!

I had my results appointment on Friday 4th Oct. I was extremely nervous about it all week. Couldn't sleep much and on the day I felt like I was going to be sick. Lets just say I went in there with a feeling that it was going to be bad news. I had prepared myself for the worst. Sam and his mum Penny came with me. The Dr didn't keep us waiting too long so that was great. He asked how I have been feeling and I said I had a cold, he replied that he will want to know about that soon but first he's sure I want to know my results. I said it depends on if its good or bad news!! His reply was..... "It's all good"!! Phew! I felt like a tonne of bricks had just been lifted from my shoulders. From then on it was all good. He said the Pet scan showed no sign of activity and the Ct scan showed the nodes had significantly dropped in size. I found out that the biggest one in my chest at my last scan in January was 7cm x 4cm, whoa! I hate to think how big it was before i started chemo then! From memory he said its about 4 x 1cm now. I have another appointment with my Oncologist in a months time to have a chat and for him to feel my neck to make sure nothing is happening. I will have at least 3 CT scans in the next 12 months and blood tests routinely.

I have realised a lot in the last 12 months. I have figured out who will and wont be there for me. I lost a lot of people I thought were friends but at the same time I made some incredibly great new friends who have stuck by my side since the very start and are still there today <3 you all, you know who you are! 

Although I am technically 'free of cancer' physically, mentally I never will be. It will always be in the back of my mind. For the next few years until my hair grows long it will be a constant reminder of what I went through every time I look in the mirror. I have scars all over my body from the chemo. Every time I stand up my body aches. I have a scar on my neck that one day I hope I can look at with pride instead of wanting to cry at the reminder of what once tried to kill me. Life wasn't meant to be like this, I shouldn't have to live with the constant anxiety and 'what ifs' for the rest of my life. Not to forget all the scans, doctors appointments and blood tests I will have to have for the rest of my life. I was 25 and cancer took away my innocence, it took away my care free attitude towards life, it took away me. I now look at the world in a whole new light, I will do my best to help people that need help and always be there for my friends when they need me. I think now I am a lot more of a giving person and always try to think of others. You don't need to spend money to make someone happy, you just need to be there for them. Just sitting and spending time with them, sending them a card or a text to say you are thinking of them and ask how they are, that is all that is needed and really not that hard. It takes 2 seconds to send a text and honestly you will never know when you need your friends or help in return. 

I thank everyone who was beside me on this journey, love you all! 

So now onto the party planning!! 

Hope for the best, prepare for the worst!

Last weekend I spoke to my Uncle Graeme who I haven't talked to in many years, he mentioned that he reads my blog and that I haven't updated it in a while, so this update is for you :)!

It's been nearly 6 weeks since I updated this, oops sorry!! In all honesty though I have come here quite a few times to do an update, but just haven't known what to say and I guess no news, is good news, right?!? 

I officially ended chemo on Sunday 11th August 2013!! It has been great waking up knowing that I don't have to go to the hospital for more chemo!! I still have my PICC line in (my choice) so have had to go back to the hospital once a week for a dressing change and a blood test. 

In the last 6 weeks the lowest my hemoglobin has dropped to is 81 which was in the week after I finished chemo. My last blood test results from 6/09/13 it was at a 102, so slowly improving, every now and then it drops down a few but no where near the 80 zone which is great, so means no more blood transfusions for me!! 

I have been getting my energy back which is a great feeling! I spent a week back home at Mum and Dad's the other week, which was nice. I got to catch up with a few friends that I hadn't seen in a while. Have been on a couple of lunch dates with some other friends back in Adelaide, feels good to be able to start living life again! I have slowly been getting my house back in order too and have been able to help out with a bit of cooking and cleaning! The only real side effect I am experiencing at the moment, is joint pain in my ankles, elbows and hands. I also have the neuropathy in my hands and feet still, other then those 2 things I generally feel pretty good. I still get tired if I push my self too much though. 

So tomorrow marks the end of the 6 week mark since I finished chemo, so that means I have my scans to see what this nasty thing called Cancer is doing!! Best news will be that its all gone!! I have my PET scan Monday 16th September at 9am! CT scan is scheduled for Friday 27th September. I get my results back and find out where I go to from here on Friday 4th October. Which ironically is 1 YEAR TO THE DAY since I found out I had cancer! I got told on Friday October 5th last year! So lets hope that this year I hear the words "No active cancer"!! With cancer though I have learned you need to 'hope for the best, prepare for the worst' which is what I have done throughout my whole treatment! I can't believe its been almost a year, it has gone unbelievably fast. It does not feel like I have had a year off work! When the doctor told me what he thought I had, he told me that it would take a year out of my life, he wasn't wrong! I am looking forward to being able to enjoy my birthday, Christmas and New Years a lot more this year! Wasn't a lot to celebrate last year, with a cancer diagnoses not long before. 

I wish I had more to update you all on, but I don't! I will have more news in a few weeks! xx

Bag 18 & 19 of blood and a few other details!

So my assumption about needing a transfusion was right! I had my blood test on Thursday. I then got a phone call at 4:30pm from the RAH saying I needed to come in on Friday for 2 bags of blood as my haemoglobin was now at 76. 

Friday at 8am - Sam and I headed of to the RAH to be there by 9am so they could do a blood test to match my blood type and order my blood. They had originally booked me in to have my transfusion at 1pm but said the results should only take an hour or so to come back so I could wait and they would change my PICC line dressing while we waited so I don't have to come back on Monday! It took just over 1.5 hours for the results to come back but it was just easier to stay there and wait then go back. My transfusion started just before 11am and finished at around 3pm. This brings my total of bags to 19! I remember my first one like it was yesterday, it terrified me! I must say it did get easier as time went on, but I still never felt comfortable with them! 
Before I left I asked them to print off my blood results from the test I had the day before, I don't usually ask for them, but thought it would be interesting to see. My platelets were only 35! No wonder my nose has been bleeding when I blow it, nothing major though! My neutrophils were only .63 (normal 1.8-7.5) so I was advised to stay home over the weekend as I am at a high risk of getting infection with a count that low. I took their advice as I don't want to spend a week in hospital right at the end of my treatment!

Bag number 18!

I technically haven't finished chemo as I have a 21 day cycle, so the END is this Sunday 11th August and hopefully after that I can start to feel better. 

My muscles have completely deteriorated and I struggle to walk far or stand up for more then a few minutes. This is from the steroids that I have been on. Also my heart rate is erratic so walking a short distance from the bedroom to kitchen makes me feel like I have run a marathon. My hands and feet are still numb (called Peripheral Neuropathy) from the IV Vincristine I have on day 8, I am hoping this will go away now, but have read that it can hang around forever! 

I have a meeting with my Oncologist on Friday 9th August, so will hopefully find out more as to where I go from here then! 

The other night I worked out how much of everything I have had since I started this journey! I know I have forgotten some things, but this is the main list....


2 Neck biopsies 
1 Bone marrow biopsy 
1 Neck Ultrasound
2 Arm Ultrasounds
19 Bags of blood
9 Months of chemotherapy
3 Pet Scans
4 Ct Scans
6 ECG's
2 Gated blood pool scans (heart scan) 
1 Lung function test
Numerous bags of IV antibiotics
Numerous tablet antibiotics
70 Clexane injections in the tummy
10 Neulasta injections in the tummy
4 weeks in hospital 
5 chest x-rays 
2 Ambulance rides
696 Famciclovir tablets
170 Ozpan tablets
224 Procarbazine tablets (chemotherapy tablets)
336 Prednisolone tablets (steroids)
TOTAL of 1426 tablets in 5 months.. not including antibiotics!!
Liquid Potassium
Liquid Bactrim 
Over 70 blood tests
2 PICC lines 

13 bags of Adriamycin
13 bags of Bleomycin
5 bags of Vinblastine
5 bags of Dacarbazine
24 bags of Etoposide
8 bags of Cyclophosphamide
8 bags of Vincristine

Its crazy seeing it all written down!!!

I did it!!!

Wow I did it, I really did it!! I made it through 9 months of chemotherapy, who would of thought I could do it? Certainly not me! If you asked me 9 months ago if I thought I would be where I am today, the answer would of been no! I was so certain that I couldn't do it. I guess I proved myself wrong. 

So here is a rundown of my last round of chemo: 

Monday 22nd July - I arrived at the hospital at 8:45 and met up with Kirsty, we made our way up to level 7 and took a seat in the waiting room. As you may recall I was unsure whether or not I would be having chemo today as my platelets level on Friday were too low (50). I had a blood test and it was about a 2 hour wait for the results to come back! They finally came back at 11am and...... it was good news! They needed to be 80 or over and were EXACTLY 80!!! So I had my chemo and then Kirsty dropped me back at Sam's parents house and I spent the day there. 

Tuesday 23rd July - Sam's mum came with me for this one, we arrived at 9am for my appointment. All went well again. Sam's Mum and I did some shopping at Kmart then picked up his Dad and went to lunch at Barnacle Bills! 

Wednesday 24th July - Sam took me to this one, nothing to report. 

Thursday 25th July - Had a blood test today, haemoglobin was 89 so I am expecting that I will need at least one more blood transfusion before this is over.

Monday 29th July - LAST DAY!!! Sam came with me to my last chemo appointment! I had nurse Jeremy who I have had a few times before, he is the only male nurse in the chemo day centre, a lovely guy! All went well, had the usual indigestion pains during the night, but nothing too bad. My haemoglobin is obviously still ok because I didn't get a phone call from the hospital today.

Tuesday 30th July - I had my last nuelasta injection in the tummy today (Thanks Marit)! I woke up with really bad pains in the upper part of my tummy and the feeling I was going to be sick, about 30 mins after Marit had been I started vomiting, I waited a little bit and had a dry piece of toast so I could take my tablets and then try and get some sleep. I slept for an hour or so and woke up feeling a bit better. I wasn't sick for the rest of the day so not sure what caused this as the side effects of the 2 IV chemo's I had the day before don't cause nausea.

So that brings me to today, Wednesday 31st July. I woke up feeling better today, have had a little chest discomfort on and off all day, but I usually get this so not overly worried about it. I am feeling pretty flat and still have my crazy heart rate when I get up and walk around which is annoying and leaves me feeling pretty exhausted! I have a blood test tomorrow, a little worried that my haemoglobin is going to be low and I will have to go in for another blood transfusion. 

So now I wait 6 weeks until I have my scans to see what my tumours have done. I will have a CT and PET scan. If the PET scan comes back with any 'activity' then I will need another biopsy to confirm whether its cancer activity or just scar tissue. If it's cancer then I move onto weeks of radiation, or if it comes back as just scar tissue then I can move on with life! 

Now what to do with my time?? Chemo had become my life. I can't wait to start feeling good again though, I really have forgotten what that feels like. If I am honest its been years since I felt good. I thought feeling so tired and lack of energy was "normal".  

I do have that fear in the back of my mind that the chemo hasn't worked or hasn't worked well enough. Many people tell me to be positive and not to think like that, but I am a firm believer that you need to prepare yourself for the worst at least a little bit. I would hate to walk into the Dr's office thinking everything is going to be okay to be only told bad news. 

I guess time will tell!

Stupid platelets!

Monday 15th July I went into the hospital to have my PICC line dressing changed, the nurse told me that my haemoglobin was low last week so wanted to see what it came back as today and that she would call me when the results came in if I needed a transfusion. I was out for lunch with Sam, Kirsty, Michael and their kids when the nurse called to tell me haemoglobin was now 81, she gave me the option of having a transfusion on Tuesday or waiting to see what Thursday's blood test came back at, of course I said I would wait. She said that she would book me in for blood on Friday just incase otherwise I wouldn't get an appointment if I needed one. 

Thursday 18th July Sheena (IMVS Nurse) came and took my blood and I waited to get the phone call that I knew was coming from the hospital to say I needed blood. I can usually tell when I am going to need it as I feel really flat and tired when my blood is low. 4pm came and the nurse called to tell me my haemoglobin was now 77 so I would need 2 bags of blood on Friday at 10:30. She said I had to go the local IMVS clinic first thing Friday morning as they didn't have a group and match for me. I told her that I was pretty sure that Sheena had taken one that day, but she said that nothing was showing on her screen so go and get one anyway.

Friday 19th. Sam and I got up early and headed to the IMVS clinic so I could get a group and match done. I was talking to the nurse there and told her that I was going in for a blood transfusion at 10:30am that day, she said that my blood test wouldn't be picked up from her until 10am and the results wouldn't get back to the RAH until after 12pm so she didn't see any point in her taking my blood. I said that I explained to her that I was sure Sheena did one yesterday, she said that she could make a phone call and find out what was taken. A group and match was taken so she said the RAH should have my results by now. So of we went to the RAH hoping that they had my blood type matched and blood bags on order so we wouldn't have to wait around. 
We arrived in time for my appointment and I had to wait a few minutes in the waiting area. My nurse for today was a new one that I hadn't had before. I said to her about not having a blood test that morning and she said she would check to see if there was blood for me in the fridge. She came back with a bag of blood, yay! I had 2 bags of blood (bags number 16 & 17), when I was nearly done with my 2nd bag I realised I was going to be late for my appointment with my Dr and asked one of the nurses to call him to let him know I was going to be late. He came up and seen me instead. We spoke about what is going to happen when I finish my last round of chemo. I wait 6 weeks and then have scans, then possibly another biopsy and radiation. I asked him what he predicts is going to happen and he laughed and said with me he doesn't want to predict anything!!! He told me that my platelets from the blood test on Thursday were 50 and at that stage are too low to go ahead with chemo on Monday, they need to be over 80 for them to proceed. I need to get a blood test first thing Monday when I get to the hospital and they will make the decision then as to whether or not I can have chemo, if they come back too low still they will postpone my chemo until later in the week or possibly even the week after. This is the lowest that my platelets have been. I have pretty much slept all of the weekend so I am hoping that my body is repairing itself for tomorrow and that my platelets have at least gone up to 80 so that my last round isn't delayed! 

7 down.... 1 TO GO!!!

I am sitting on the lounge knowing I need to write another blog and keep "everyone" updated.. who ever you may be! Not sure anyone actually cares or reads this, but any who I will attempt to finish this entry tonight..!

Yesterday (monday) I had my last chemo day for round 7, so that means I have one round to go.. yes, you read that right, I have ONE round to go! I really can't wait to finish and I have many mixed emotions, but more about that another time. Now to tell you about round 7..

Friday 28th, I had my usual meeting with my Oncologist before starting the next round. He was happy with all my blood results, except my haemoglobin from my blood test the day before was 73 and that he wanted me to have some blood. He asked me to get another blood test done after my meeting with him just to check to make sure it was right. I explained that I was going away for the weekend and he said that I could still go and would ring me with the results from the new test. He was happy with how everything else was going and said that he could feel one lymph node that was under a centimetre. I went and had my blood test and headed off for the weekend. A nurse called me to let me know that Michael had booked me in for 2 bags of blood as my re-test had come back at 76, she asked me to get a group and hold blood test done (which shows what blood type you are) if I could but we soon realised that the IMVS clinic in Mannum isn't open after 12:30pm during the week and not at all on weekends. She said that it would be okay and I will have to have one first thing Monday when I come in. The weekend away wasn't what I had hoped it would be, I was extremely flat and pretty much slept the whole weekend away. One of my amazing friends Bec, cooked up an enormous amount of food for me to take home!! Its people like her that make this journey that little bit easier, so.. Thank you!!

Sam and I arrived at 9am on Monday 1st July, I had decided over the weekend that I would much rather have 2 bags of blood then have my chemo, I didn't fancy sitting around for 5 hours after having chemo. They took my blood and sent it off, lucky for me my chemo script hadn't been taken down so no chemo had been made and there was a delay. I was hoping that my blood type would be matched and the blood would arrive before the chemo did! I sat there for 2 hours waiting for something to happen! My chemo arrived first, but we knew my blood was just about on its way too! My nurse for the day said that she could give me one bag of blood and then chemo then another bag of blood. I asked her to have the 2 bags first. Both went through with no problems, this brings my total to 14 bags of blood! Then onto chemo, which also had no problems. While I was having my chemo, my blood results had come back from the test I had that morning. My haemoglobin had dropped to 68, that explains why I felt so crap over the weekend. They decided that I needed another bag of blood the next day.

Tuesday 2nd July - Sam's Mum took me today and we arrived at 9am. I can't remember (chemo brain haha) but I think I had my chemo first then my bag of blood. Blood = 15 bags!

Wednesday 3rd July - Day 3! Sam came with me to this one. All went well!

Monday 8th July - Sam's Mum is now on holidays so she took me to this one again. I had my chemo and a PICC line dressing. I asked for my blood results from my blood test I had last Thursday. Haemoglobin had gone from 68 on the Monday to 96 on the Thursday, so my 3 bags of vampire food really pumped it up!! Hopefully that means no more blood for this round... I can wish, can't I? I spent the rest of the day hanging out with Penny, we went out for lunch, did some retail therapy, watched a movie and then had tea, was great spending some time with someone other then myself. Was so tired by the time I got home, I went to bed at 8pm!!

Tuesday 9th July - I experienced the usual symptoms of indigestion from day 8 last night, but thankfully I went to bed so early that I was asleep before it got too bad. Today I also had my Pegfilgrastim needle to boost my white blood count, Thanks Marit :)!

Until next time... 

Blood Transfusion Confusion

Monday Sam and I headed into the RAH for my 9:30am PICC dressing appointment. When I got there I asked if my blood could be given earlier so I didn't have to wait around for it, the lady behind the desk said that she would ask the Nurse who was looking after me that day. I waited in the waiting room until my Nurse came and got me, I asked her about my blood and she said that she didn't know anything about it, so went to check with the ladies behind the desk. We then realised that no appointment had been made for me. I went back and sat in the waiting room while they tried to figure out what was going on. 

She came back and got me and said no blood has been ordered either. I explained to her who it was that called me and that she asked me to have another blood test on Saturday so they could match my blood. She then checked my blood results from saturday and said my haemoglobin was 86, so didn't need blood anyway! I was pretty happy with that because I hate having blood transfusions and didn't fancy sitting there for 5 hours while it happened!

Day 8

Tuesday 18th June was day 8. My appointment was at 9am and Sam's Mum came with me. My haemoglobin from the day before was 86. The nurse told me to make sure I get another blood test on Thursday (I always do anyway). Thursday came around and I woke up feeling pretty flat and tired so knew my level had decreased. Sheena (IMVS nurse) come's to my house at around 11am. I then wait until about 4pm to see if I am going to get a phone call from the RAH telling me I need to come in for a blood transfusion, sure enough 4:30pm came and I got that phone call. They can't get me in until 11am on Monday 24th though. Works out better as I was already going in for a PICC dressing anyway so means I don't have to try and find someone to take me on another day, but just means I will be feeling pretty flat for the weekend. Tuesday and Wednesday night I also had pretty bad indigestion, which mylanta doesn't seem to do anything for! 

I was just looking at my "stats" for my blog and thought i would share with you where my "readers" come from. It's interesting to see that it has readers in other countries and nice to know that people are reading this haha!

Entry	Pageviews
Australia	42
Sweden	29
Germany	19
Russia	4
United States	2
France	1
Netherlands	1
Poland	1

Time goes fast..

Wow that 4 weeks went quickly!! Tuesday 11th June I had day 1 of round 6! I would normally have it on Monday's but we had the Queens Birthday public holiday so it was postponed until Tuesday. I had a meeting with my oncologist at 8:30am before my scheduled appointment for chemo at 9:30am. 

I spoke with my oncologist about what is going to happen after my chemo has finished. He said I could get my PICC line out after my last chemo, but wanted me to wait at least 2 weeks to see if I will need blood that round. I think I might wait until after my scans in the middle of september though, so I don't need a cannula put in for each of them. I will have a CT and a PET scan. If the PET scan shows any activity I will then need to have another biopsy done to confirm that it is cancer activity and not just scar tissue. If its cancer I will then go on to have radiation, I am not exactly sure how much of this I would need. If the PET shows no activity, then that's great, I will not need radiation. If its activity and the biopsy shows its just scar tissue, then no radiation either!! He wanted me to get a blood test done before I started my chemo that to check my platelet levels were high enough to have it.

My appointment wasn't until 9:30am but they took me through at 9am to do the blood test as they knew it would take a while to get the results back. They did my PICC line dressing while I waited. I had to wait about an hour or so before my results came back and chemo started, my platelets were fine. We got home about 1pm, I was feeling a little nauseas so spent the rest of the day in bed. 

Day 2 and 3, were both ok. 

So that brings us to tomorrow, which will be day 8, last chemo day of cycle 6. After tomorrow I will have 8 chemo days left and 2 cycles!! 

Blood Transfusion

June 5th - I had 2 bags of blood today. I took my temperature before I left for the hospital and it was 37.3 so I was worried that by the time i got there it would be higher. At the start of each transfusion they take your blood pressure, heart rate and temperature. My heart rate was 150 and my temperature was 37.8! The nurse rang my doctor to ask what he wanted her to do. He said my heart was fine as that's normal for me, to keep going with the transfusion and to give me panadol to see what happens with my temperature, if I spiked at 38 to stop the transfusion and to call him again. She took my temperature about an hour after the panadol and it was 37.7. I had a beanie on that covered my ears so we thought it could be that, that was making me hot and giving me a higher reading, so I folded it above them to see if the next reading would be lower. I finished the first bag of blood and she took my temp again, this time it was 37.1, yay!! Blood cultures were also taken to be sent off to see if I had an infection. One more bag of blood was given and temp taken at the end, 37.2, so I was free to go home!! 

Round 5/8

Monday 20th May - I wasn't sure if i would be having chemo or not as on Friday my platelets were too low. I headed off to the IMVS clinic to get a blood test, she told me she didn't know if the hospital would have my results by the time I was due in for chemo. We went home for a bit and then headed into the RAH. My platelets had increased from 47 Friday to 100, so was able to proceed with chemo, yay! I started the base dose of BEACOPP, which now means I have 3 less tablets to take!! 

Tuesday 21st May - Round 5 Day 2. Nothing to report

Wednesday 22nd May - Round 5 Day 3. Nothing to report

Friday 24th May - Needed 2 bags of blood today as my haemoglobin was 78. This brings the total bags of blood to 10! 

Monday 27th May - Round 5 day 8! This time they just dripped the chemo through rather then pumping it. This seems to have made the side effects of these particular drugs a lot less! Tingling in fingers and toes hasn't been as bad and the indigestion, even though still there not as bad as last round.

Monday 3rd June - I went in for a PICC line dressing today and had a blood test while i was there. Blood results from last thursday for haemoglobin was 93 so I thought i would be alright and not need blood this round! I thought wrong, got a phone call when I got home saying it had dropped to 81, so I will need to go in on Wednesday and have 2 bags of blood. It does explain why I have been feeling so flat and tired the last few days. Total now 12!!

A week in my life...

The week that was... 

Monday 13th - I had a PICC line dressing today and a blood test. Sam and I went to the shops after this, I ducked under the railing and when I went to stand up, my legs were too weak and I couldn't, so that mixed with the ground being wet, I slipped over and hurt my arm. 

Tuesday 14th - The oncology centre rang to ask if I had the Pegfilgrastim needle last week as my white blood count was now extremely high. I told her I had it last Tuesday (7th). She thought this was the case and said that it must have taken a while to kick in. She also told me that my haemoglobin was 84. She asked if I was having another blood test this week and I said I have another one on Thursday, she told me don't be surprised if I get called in for blood. My arm is still pretty sore.

Wednesday 15th - Nothing to report other then my arm still being pretty sore. I think I may have pinched a nerve when I fell on it. 

Thursday 16th - I had my blood test and the pain has gone from my arm... yay! I did our first online grocery shop through Woolworth's today, it gets delivered on Saturday, can't wait :). 4pm and the oncology centre rang to ask how I was feeling as my haemoglobin was now sitting at 81. She asked if I wanted to come in for blood tomorrow or wait until Monday. I told her I was feeling ok and that I had chemo monday/tuesday/wednesday next week, so we decided it was best I had blood tomorrow. She asked me to get a blood test in the morning to get a "group and hold" done to match my blood type. I said I couldn't as I didn't have any blood forms but I was coming in tomorrow at 1pm anyway. She asked me to get there at 12:30 to have blood taken and that they would squeeze me in for 1 bag of blood after my appointments. 

Friday 17th - I woke up early (6am for the ones playing at home) so Sam could drop me at his parents on the way to work. At 11:45am Sams Dad drove me to pick up his Mum and take us the hospital. We went up to the Oncology day centre to have my blood test done and then we went and had something to eat and drink. 1pm we went and met the psychologist Olivia and then had my meeting with my doctor. I had a few questions to ask him this time. I am half way through my treatment now, so next round which starts on Monday 20th i go onto the "Base dose". 

Drug	Base BEACOPP	Dose-Escalated BEACOPP	Method	Cycle Day
(B)leomycin	10 mg/m²	10 mg/m²	i.v. push	day 8
(E)toposide	100 mg/m²	200 mg/m²	i.v. infusion	day 1-3
(A)driamycin (doxorubicin)	25 mg/m²	35 mg/m²	i.v. push	day 1
(C)yclophosphamide	650 mg/m²	1250 mg/m²	i.v. infusion	day 1
(O)ncovin=Vincristine	1.4 mg/m² (max 2 mg)	1.4 mg/m² (max 2 mg)	i.v. infusion	day 8
(P)rocarbazine	100 mg/m²	100 mg/m²	orally	day 1-7
(P)rednisone	40 mg/m²	40 mg/m²	orally	day 1-14

He felt my neck and said that he can feel 2 nodes, possibly 3, but they are all 1cm or under which is normal size for nodes... yay! I will have scans at the end of it all to see how good it has worked and whether or not I will need radiation at the end. If all goes to plan my last day of chemotherapy will be July 29th! We then went up stairs to level 7 so I could get my bag of blood and so my doctor could check my blood results.
Before each bag of blood they check your obs... so heart rate, blood pressure and temperature. Heart rate was high (like normal), blood pressure was good and temperature was 37.5 (eeeek, the nurse told me it wasn't allowed to go any higher then this lol). She manually checked my heart rate and told me she thought it was irregular so wanted to do an ECG just to make sure. I had the ECG done (they can bring the machine to you) and my doctor looked at it and said it was fine (phew)! My doctor checked my blood test results and said that if I was due to have chemo today he wouldn't let me as my platelets are too low. He said to have a blood test first thing Monday morning to see whether they have come up enough to have chemo. Fingers crossed they are high enough otherwise it will delay my treatment and end date! Sam's mum went and got my scripts filled for me while she waited. It takes about 2 hours to have one bag of blood. At the end they check your obs again, heart rate had come down slightly, blood pressure fine and temperature still 37.5 so I was free to go home. We had pizza for tea at Sam's parents and then headed home. 

Saturday 18th - Nothing to really report for this day. We got our groceries delivered, soooo awesome! Will be doing it like this from now on!

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!!

I get knocked down.. but i get up again!

Round 2 of BEACOPP nearly completed! This time my nausea kicked in a lot earlier then the first time. I was just coming to the end of the day and I started to feel quite sick, they gave me some Maxalon to help and wanted me to stay another 30 minutes on fluids, I told them I just wanted to go home, so they let me go. We got about 5 minutes from home when the vomiting/dry reaching started, this lasted for the next 4 or so hours until about 9:30pm when I tried to get some sleep. I managed a few hours sleep and then woke up again, laid awake for a while and then fell back asleep, thankfully no more vomiting through the night. Once again it was hard getting back up the next day to go back for more! Sometimes I think back and wish so badly that the ABVD worked so I didn't have to go through this chemo!! With this chemo I seem to have a lot more side effects including:

Vomitting
Sore skin... Yep it hurts haha!
Sore mouth, ulcers, burning etc
Blood noses 
Low platelet count
Low white blood count
Bone pain from the Nuelasta needle i have on day 9
Chest pain after day 8 chemo
Dry skin 

Like the song says... I get knocked down, but I get up again! This is what it feels like with the BEACOPP Chemotherapy regimen, it knocks me down.. but then I still have my "good" days! 

I also thought i would share some photos with you with what an oncology day centre looks like...

The lifts!

The corridor that I walk so many times a week! 

The waiting room! 

One of the bays!

Meet BOB! He makes a great cocktail....

Different bay - I take my Ipad to pass some time!

Nurse setting up to change my PICC dressing!