This post is dedicated to my mother, for all she has done and continues to do.
Days +1, 2 and 3 passed relatively quickly and without significant issue. I started a raft of supportive medications - everything from antibiotics and antifungals to antiacids and antivirals. Unfortunately, the days were beginning to drag in and despite the positive tone of "War and Peace" doubt was starting to manifest itself....will it work? What happens if it doesn't? The usual negative thoughts that come when you have done all you can do.
Day +4 was probably the worst both mentally and physically. The lump of scar tissue left in my neck had shrunk, and this left me convinced that there was still active lymphoma there (never did I think something getting smaller would be a worry!) Physically, I had no energy, no appetite, and to top things of the world was falling out my arse! And when I say falling, I mean pouring...
My white blood cell and neutrophil count hit a grand total of 0 on day +5, leaving my immune system wholly annihilated. And the bacteria made sure to take advantage of this - spiking a fever and beginning antibiotics to tackle sepsis caused by a bacteria called Staphylococcus heamolyticus. Staph Heam is typically found on your skin but poses issues when it enters the bloodstream of those who are immunocompromised or indeed in my case immuno-nonexistent.
The following day my temperature remained under control until a flare-up around bedtime led to a sleepless night with the constant antibiotics and my first ever blood transfusion. I received platelets due to a platelet count of 10. Platelets are the cells in your blood responsible for clotting, and the normal range is between 150-450, hence the transfusion. After, this things calmed down on the infection front. The only goings-on for a few days was the replacement of the salts in my body, potassium and magnesium were being replenished most days and calcium was being reinstituted daily.
Day +8, my white cell count went from 0 to 0.1, and on day +9 my neutrophils went from 0 to 0.1, a sign that the stem cells had reached my bone marrow and were now starting to create cells. At this point, the diarrhoea started to subside too, slightly.
By day +10 my neutrophils reached 0.5 the level at which you could go home if they remained above that value for a few days. But, from then on, they only continued to increase, and by day +12, they were in normal ranges for an adult.
By this point, we were all ready to get home. With the aim of being discharged day +13. Pretty speedy and cutting the average stay short by four days. However, I spiked a temperature and again started antibiotics and got some more platelets. The antibiotics had no effect and my bloods showed no infection nor did a CT scan or an echocardiogram. The CT scan was exciting none the less as it was the only opportunity I had to leave my room in the four weeks we were there.
The only other thing that could have caused infection was my Hickman line - so out it came too. It felt brilliant, and life has been great since. Namely the care-free showers and long baths. However, I do miss fiddling with the clamps on it which had become somewhat of a habit.
All these tests brought us to day +17 where a rash appeared on my legs and arms. At this point, the doctors made a diagnosis of Engraftment Syndrome (ES.) ES is a pretty rare complication of autologous transplantation, occurring in about 7% of people...I know what you are all thinking, of course it would be me. The cause of ES remains largely unknown but is thought to be related to the release of inflammatory chemicals called cytokines in response to the creation of one's new immune system. ES is treated with a short dose of steroids to suppress the immune response and stop the symptoms. I started steroids on day +17, and almost instantly, the symptoms stopped.
Day +20 I argued the case for my freedom, which I was duly granted—the most infuriating day waiting on everything being in order to allow for discharge. Living of a bag of harribo tangfastics a day for three weeks ensured the weight fell off me, 20kg in total - I couldn't wait for a decent, homely meal. The staff from the ward queued up outside to watch me ring the bell and make my proclamation of the end.
My humble abode
Since I have been discharged, things have improved every day. My blood counts now all rest within normal levels, and I have been slowly building up my stamina through short walks. I even started my new job this week.
I am glad that I can now look back on this experience and get on with life. It has been unyielding, but we have made it relatively unscathed. Although it may not sound like it the whole experience wasn't as bad as I anticipated - mind you, I still wouldn't recommend it.
Is this the "some day" that I have yearned for? Let's hope so.