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!
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.
Wednesday, July 31, 2013
Sunday, July 21, 2013
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!
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!
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...
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