Sorry I did not update the blogg in the past week but it all got a little too much for me! I now have a new friend on board - port 2 - 2 because it is my second port and 2 because this port is double the size of the old one to allow 2 treatments to go through it at once! It is however on my left side and they did place it in a (hopefully) more comfortable position. The port went in yesterday afternoon and compared to last time I am feeling reasonably ok - just a little sore (I had a general instead of a local this time and am on good pain killers). I am grateful for small mercies though as I do have a lovely private room (lately they keep putting me in shared rooms). It has a balcony with a view of the city and a desk to put my laptop on so I am very happy considering this will be home for awhile.
Yesterday was a day of operations for our family - in the afternoon my port went in but in the morning little Tiernan had to have a colonoscopy. He had a few troubles starting on the weekend and we saw a gastric paediatrician on Thursday (they were lovely and managed to fit us in for an appointment this week instead of the usual 1 month wait). He then said he needed a colonoscopy to make sure there was nothing of concern and fitted that in for Friday morning for us. Tiernan was very excited about going to hospital and having an operation like mummy. All in all he did really well. There were very few tears and I am so proud of how he handled it all - he even coped with having a drip left in for a few hours after the op. All the nurses commented on how well he coped with it all - he was just incredible. His biggest issue was not eating - he had to fast from Thursday lunchtime and was only allowed jelly, juice and water until 6.30am Friday and then nothing until after the op. Every time a new person met him at the hospital he asked if he was allowed to eat and if they asked how he was he would reply “hungry” or “starving”!! Within minutes of waking up in recovery he was asking for food and once he was allowed to eat he certainly made up for lost time! He then accompanied me over to my hospital and held my hand whilst having my needles and was such a fantastic little boy.
An update on my situation - the needle biospy did not get enough tissue to get a conclusive result as to whether this tumour is Hodgkins or some other nasty cancer. To get a definitive answer I would have to undergo a full (open my chest up) biopsy which I am obviously not keen on. Kerry is also not keen on this as the recovery time (2 weeks) would delay my chemo. So we have opted to treat this as if it is Hodgkins (most likely scenario) and then do another CT in a few weeks and if the tumour has not shrunk then I will have the biopsy. So I will be starting a chemo regime called ESHAP on Monday. This is a continuous chemo treatment that goes for 5 days (as opposed to my old ABVD which took about 4 hours). I will be in hospital for this. My levels will all drop and I may require blood and/or platelet transfusions to recover. Once the chemo is over I will be given GCSF injections twice daily in order to get my white cell levels (immune) back up as well as to encourage my stem cells out of my bone marrow and into my blood. This will cause a fair bit of pain and I will probably be on morphine to cope with this. Once my stem cells go into my blood they will harvest the stem cells from my blood (kind of like giving blood - much less pain than the old way of getting it out of your bone marrow). Hopefuly they will be able to harvest enough stem cells from me - if not they will need to use stem cells from Nat, Ben or Tim or if they are not a match they will look for donor stem cells or cord blood stem cells. I will be on the GCSF for around 10 days and in hospital for this time. Hopefully at the end of this I will be well enough to go home for a week. Then I will come back into hospital to repeat the process all over again. Then I will be allowed home for another week break. Then I will have a CT to see how the tumour is going. If it has stopped growing or shrunk then step 1 is a success (success rate is 60%). If the tumour is under control then I will proceed to step 2 which is an intensive high dose chemo regime (as if ESHAP is not intensive enough!!) called BEAM. The aim of this is to kill the cancer completely. It will involve another week of chemo after which my system will be completely broken down - to recover I will be given a stem cell transplant which involves them putting the harvested stem cells into my system. It takes these stem cells 10 to 20 days to graft. This second step has about a 50% success rate. Then if all of that is a success I would have 4 weeks of radiation to kill any remaining lurking cells. So the success rates are no where near the original 90% for ABVD chemo but hopefully I will get through.
It has been a tough week for us as we had some questions answered like what happens if this does not work? and if it does not work the horrid question of how long would I have. We did not really like the answers we got. If this process does not work then they would keep trying different chemos to keep the cancer under control but eventually my body would not cope with this and things would start to fail. As for a time period instead of the years we were hoping for as an answer we were told probably a matter of months. But please do not focus on that. I am feeling very positive and determined as ever to fight this. I have everything in the world to live for and I am going to do it differently this time. I am going to accept help when offered and am going to fight this cancer with everything I have got - I am determined to beat it and see my kids grow up.
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