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!
In October 2012 at age 25 I was diagnosed with stage 3 Hodgkin's Lymphoma, this is my story about the fight for my life.
Sunday, July 21, 2013
Tuesday, July 9, 2013
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...
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...
Tuesday, June 25, 2013
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!
Friday, June 21, 2013
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!
Monday, June 17, 2013
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!!
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!!
Friday, June 7, 2013
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!!
Monday, June 3, 2013
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!!
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!!
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