tr0gl0dite's blog

Getting There

2009-04-27T09:57:05Z

Things are finally happening. The funding for my sister to donate in Australia has been agreed and I have a new provisional date. We are just waiting for confirmation from the Australian hospital. I have been back to the hospital several times for lots of tests, these were not hard or painful they just involved lots of waiting around - see details below if you are interested. The lung function test is all about blowing in a tube with a clip on your nose. It's not difficult but it did make me want to sneeze. For the chest xray I had to strip to the waist and stick on a very stylish (not) blue gown then stand in front of a panel with my chin resting on the top. This one was so quick I didn't even realise they had done it; it took longer getting undressed! The ECG involved stripping off again, this time they put lots of tags on me (chest, shoulders and ankles) again it only took a couple of ticks once it was all set up. The GFR (kidney) was the worst one because of all the waiting around. Here they injected me with something then took blood samples 2, 3 and 4 hours later. Nothing hurt but waiting around and getting back for the 'blood letting' was a complete pain. The MUGA (heart) involved 2 injections 30 minutes apart. Then they lay you on a bed, put connectors on both sides of your upper chest and on the left side of your lower chest; a large round camera type thing is then placed at an angle over you and you have to remain still for about 10 - 15 minutes while they take pictures using the gamma camera. I still need a couple more blood tests which will be done next week and the week before I go in. I will also need the central line inserting which again will happen the week before I am admitted. I have seen the ward now and met the guy with the food trolley so that is me happy! Will post again when more happens

An Update

2009-04-01T07:27:20Z

I am getting really frustrated. I was at the hospital again yesterday and checked on the progress of my appeal for funding; no update, it is still with the commissioner’s panel. The results of my brother’s compatibility test have not come through yet and could be another week. It is looking more likely that the transplant date of early May will end up being put back which is the last thing I want. There is a lot of planning around taking around 6 months off sick and being in hospital for a month. People want to know what is happening, when, so they can make their own plans and now I can’t tell them. Ggrrrrr On a better note I am doing a sponsored hair freak and raising money for Cancer Research, this at least is going well. I have raised over £400 so far and money is still being pledged. I set up a donation web page and also have lots of forms doing the rounds with family and friends. Even complete strangers are donating because they think it is such a good cause; it makes me feel better to know that something good is coming out of this trying time. If anyone wants to take a look the web page is http://www.justgiving.com/thecheekymonkey

Stress Stress Stress!!

2009-03-17T10:18:07Z

Aagghhhhh I have spent ages trying to talk to someone at my local PCT regading the funding for my transplant. Each day I call in the morning, I call again around lunch time and then again in the afternoon. I speak to lots of voice mail boxes and leave lots of messages but no-one has attempted to get in touch. Today I spoke to the health service ombudsman who gave me the details of the chief executive of the PCT and what do you know as soon as I mention his name I get put through to a human. I was so surprised I couldn't think of what to say!! I also contacted my local MP's office, they called me back within 2 hours and were most helpful. At least some progress is being made, all I need now are some answers

Slow But Sure

2009-03-04T13:35:34Z

Not much seems to be happening from a hospital front, I have had an email saying they received the blood from my sister and are getting it tested but that is as far as progress has gone. I have another appointment next week so maybe I will find out more then. I also have a normal clinic appointment next week; I will only have been back on the drugs for 3 weeks by then so am not expecting any surprises in the blood counts but maybe they will have the results of my last PCR. Things at work at getting a bit manic, the bosses are just beginning to cotton on to the fact that I won't be around for 6 months! I'm just looking forward to spending some quality time in my garden and topping up the tan; heres hoping we have a good summer. More later

One Small Step

2009-02-26T10:26:12Z

Firstly thanks Comkick I appreciate the support, to clear up the point you made - yes I am having a mini transplant or using the hospital terminology "reduced intensity peripheral blood stem cell transplant" now isn't that a tongue twister if ever there was one! Secondly, hooray one of the things that has been causing me stress is finally being sorted out. As previously stated my sister lives in Australia and will be coming to the UK to provide the stem cells for me. As we are having to pay for her travel and loss of earnings within the family (much as the donor web pages say we shouldn't) we wanted to be sure she was fully compatible. The hospital need to check her for CMV as I am negative, before they finally confirm her compatibility so we asked for the test to be done in Australia. Instead of asking an Australian hospital to do the test they have asked for the blood to be sent back to the UK so they can do the test; I can only assume they don't want to pay for Australia to do it. It has taken several weeks and lots of chasing but the necessary bottles were finally received by my sister, she has had the blood taken and arranged for it to be sent back to the UK. Hopefully we will get the results soon and we will get the confirmation we need. For those that want to know Cytomegalovirus [CMV] belongs to the herpes family of viruses, which includes the viruses that cause chicken-pox/shingles, cold sores and glandular fever. CMV stays hidden unless our immune system starts to fail which can happen following a stem cell or bone marrow transplant. If this happens, the virus can attack the lung, gut, liver or nerves and in some cases can prove fatal. Anti-viral drugs are used to stop the virus becoming active. Anyway that is all for now

CML Transplant

2009-02-24T08:52:52Z

Well I guess it is one thing to decide to create a blog but quite another when you start thinking about what to put in it. I guess a little background is the place to start. I was diagnosed with CML in May 2007. Treatment with Imatinib and Dasatinib has failed, my blood counts fall too low and I can't tolerate enough of the drugs to work on the cancer. The decision was made in Jan of 2009 that I would have a stem cell transplant at Addenbrooke's hospital in Cambridge and the provisional date is May 3rd. My sister was tested just after I was diagnosed and found to be a donor match however there is a slight logistics complication in that she lives in Australia. There are lots of things going on at the moment and my mind seems to be in a perpetual state of whirl, I am hoping that putting my thoughts together for this blog will enable me to gain a better perspective. Or alternatively it will provide an anonymous place for me to rant. Anyway enough for now I will update later with where things are at the moment. "Life is always full of choices, just not always the ones you want"