It is amazing what a difference a week makes in the life of a cancer patient. Towards the end of last week I developed some pain in my arm near the PICC line entry point (this central line travels from a vein in my left arm directly to my heart for blood tests/transfusions etc). The pain moved to my armpit over the weekend. I emailed my clinical nurse, Ming, on Friday and he suggested to monitor it over the weekend. A call to Ward 7B on Saturday night confirmed that it might actually be a blood clot but monitoring it was one option or I could go into Emergency at RMH (10.00pm on Sat night). I chose to monitor it rather than spend all night in Emergency!
On Monday after contacting Ming again he requested I return to hospital for an ultra-sound scan and indicated the PICC line had to be removed. He said they usually only last up to 8 months with mine being inserted back in January – well past its use-by date. The ultra-sound showed a partial blockage of the vein with a large blood clot.
The PICC line removal is a tricky procedure. If my platelets are below 20 then I would require a top up of platelets to prevent excessive bleeding. And if they are above 30 then blood thinning medication would be required to assist with the removal of the clot. The removal of the line could also dislodge the clot sending it into my lungs!
Given that my platelets were just 21 last week I was convinced that I’d be in the right zone of above 20 but below 30. A blood test was required to confirm.
And when the result came back it showed my platelets had climbed to 42! How does this happen? In one week the count had doubled – incredible. This was a double edged sword as a high platelet count was good news but it now meant I needed to go on a course of blood thinners for 2 weeks – which are injections not tablets!
Luckily the removal happened without any complications.
Meeting with Amit Khot
On Tuesday we had our monthly consult with Amit Khot – the lead BMT consultant working on my disease. He was pleased with my blood results (Hbs 91, Wcc 5.0, neutrophils 1.9) and has now moved me from weekly blood tests to fortnightly blood tests – another huge (but somewhat scary) milestone.
This is because as bone marrow transplant patients we tend to live from blood test to blood test. However Amit has advised me I now need to go more on how I feel rather than what the blood tests show.
He has indicated I will now be ready for my childhood immunisations (all these are lost with the stem cell transplant). This will happen over the next week or so.
And he also reduced some of the tablets – meaning I am now down to just 6 tablets a day! This is absolute bliss!
He ordered a study of my peripheral neuropathy to assess the nerve damage of my feet. I still experience numbness of my feet on a daily basis.
So all in all things are moving along well and this week is another great step in the right direction towards regaining my health.
On Tuesday we celebrated Oscar Sheridan’s, our nephew, 21st birthday party at a quiet family/friends dinner in South Melbourne. Oscar is the son of Jan’s brother (Michael) and my sister (Fiona) so we are super related and he is a fine young man!
On the weekend we attended the Leukaemia Foundation Conference in Melbourne. This was an interesting conference which covered the latest advances with treatments. We also had the chance to meet up with other patients recovering from Leukaemia and swap notes. This is generally re-assuring but you often learn that people deal with complications long after their transplants. This is a timely reminder that I will probably need to deal with issues for a number of years.
On Sunday morning we tried out the Melbourne train service and headed over to Claire’s new place in South Yarra for morning tea and to meet her new Kiwi flatmate Lilly.
That afternoon we spent some time with Simon and Cathy Kemp and enjoyed a lovely afternoon tea which morphed into sherry and nibbles as the afternoon wore on! The Kemps have a fantastic apartment in Footscray overlooking the Maribrynong river if we look hard we can see them from our balcony in Docklands.
And on Tuesday we had a surprise visit from Nicole Gilfedder who was in Melbourne for the Fine Foods Exhibition.