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...