A quick post to say that I am finally home. The portacath came out on Thursday and all was good - nowhere near as painful as when it went in. I then came home on Friday. My neutrophils were looking good but that was only because they made me have a neupogen before the op. They expect they will drop again by Sunday. Next week I have to go in for a blood test and a review and then also an appointment with the radiation oncologist. Not much else to report!
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Well today is the big day - my port is coming out. In the end they decided to take it out even though I am severely neutropenic. They are currently priming me up with heaps of antibiotics and I had to have a neupogen injection despite the side effects so that hopefully my count is above 0.5 by the time they operate this afternoon.
One more complication has arisen which is that my white cells do not seem to be recovering from chemo. It has been 16 days now and I am still severely neutropenic and seem to be going downhill quicker than up. If after 28 days my white cells still do not recover then they would like to investigate whether the chemo has done some underlying damage to my bone marrow and white cell production which will involve another bone marrow test. Obviously I am hoping they recover so I do not have to go through that again. Despite all of this I am still planning on leaving hospital tomorrow. I have totally had enough of the place and am very keen to get home. I will have to be very careful as I am neutropenic but I cannot just sit in here waiting for my white cells to recover as I will definitely go insane!! So I am sure I am going to have a battle on my hands tomorrow to be allowed to leave but hopefully I will be allowed home
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Well the results of my CT are good. The growth is the same size as it was in November which suggests that the remaining tissue is just scar tissue. Unfortunately because originally I was not able to have all of the staging tests they cannot be certain there is no active cancer left though. So the great news is that I do not have to have any more chemo and am having my port a cath out this week (just waiting for my neutrophils to return to normal). A radiation oncologist saw us tonight and discussed the option of having radiotherapy. After speaking with him, Cam and I decided that despite the risks associated I am going to have radiotherapy. The problem is that if the Hodgkins has not completely gone and in 2 months or 4 months or 6 months when I have a CT and it has started to grow again then I am up for very intense chemo (as if the ABVD was not bad enough) and a stem cell transplant. We decided it was not worth the risk and given that the best chance of long term remission when the mass was so large to start with is combined chemotherapy and radiatherapy, that we would do it. The risk with having radiotherapy is that it significantly increases my chances of developing thyroid cancer, lung cancer or breast cancer in the long term (now to 25 years). The breast cancer is the most concerning with ratios of 1 in 3 women developing breast cancer however chemo increases your chances of developing secondary cancers and the fact that my body already did a crap job at fighting off cancer cells does mean I could have a predisposition anyway. So we are taking the attitude of do everything we can now to cure me of Hodgkins and deal with anything else if it happens. At least if the Hodgkins does relapse I know I have done everything possible to cure it.
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Things were looking really good yesterday morning and all of my counts were behaving and doing what they were supposed to do (go up). I had a slight problem in the morning in that my blood pressure was way to low (90 / 45) and would not come up so I was put on fluids (saline and potassium). I had a lovely visit home last night in between the saline and the potassium. It was lovely to be at home and see Cam and Tiernan and Arielle.
I woke up this morning feeling terrible but thinking that surely this morning would be my morning of good news and that my blood pressure would be back to normal and my counts would have returned to normal seeing as they had been going so well. Well that was not to be the case - for some reason both my red and white cell counts took an absolute nose dive to being the worst they have been in the past 2 weeks and the old blood pressure although getting better was still not back in my normal range. So it was more potassium in the drip and I am up for a blood transfusion tonight and I am back in the severe neutropenic state - oh the joys of chemo!! Mum and dad visited today and then Cam and Arielle visited tonight so it has been a nice day despite my body not behaving itself!
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As you know dad was diagnosed with prostate cancer in September and had his prostate removed last month. He went to the specialist today for his 4 week check up and blood test results and the news was brilliant - his PSA levels which are the main indicator of his cancer have gone back to normal which indicates there is no remaining cancer. He will have to go back again and be tested in 4 months and then tested regularly again after that to make sure not so much as a cell remained but it is a wonderful result to start with. We are obviously all very pleased and relieved.
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Well I am still in hospital and will be here until Monday. My neutrophils are still low (as expected) and it is not safe to be out in the real world at the moment. So the plan is to stay until Monday by which time hopefully my neutrophils have returned to normal. I will have a CT scan on Monday morning and then get the results on Monday afternoon. Usually I see my time in hospital as a drag and grumble and groan about it. This time I am using it as an opportunity to rest up and do some long overdue tasks like arranging three years of photos into albums and converting 2 years of video into DVD. Luckily I am allowed passes out of here to go home for short visit (no visits to shops though - bummer I have missed all of the post Christmas sales!!!). I will let everyone know how the results on Monday go - fingers crossed!!
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