October was a mixed month in that the first 4weeks (long month) were great - being home helping out etc. but the back end was a nightmare.
Fundamentally that was the reason for "going dark" both in terms of keeping in touch but also mood and general well being. Basically I spiked a temperature and that meant I had to go back in to hospital on to the ward, I think it may have been triggered from the hip biopsy I had on the 16th October.
Frankly it was depressing after being back at home but the temperature came down quickly thanks to strong antibiotics and I was able to negotiate going home after just one night's observation so at least I was home Sunday evening.
However, the antibiotics combined with suspected mild GvHD meant lots of diarrhoea. This lasted probably a week and a half in total and as you can imagine was incredibly debilitating, humiliating, tiring and depressing to be blunt.
The depression was quite bad and really it was the patience of Sarah, kind words from my Dad plus various messages and calls from people that came in out of the blue and generally thinking about all the folks that have been routing for me that saw me through.
On the plus side, I learned though through talking to the hospital staff that:
- TBI causes extreme lethargy that can come back and haunt you
- Fatigue affects coping mechanisms you may have developed
- Steroids cause mood swings
Hopefully this information is of use to others then to help them when they're feeling blue, even if you are generally healthy - tiredness is a problem:
- Take time out & relax
- Find time for yourself, re-focus and start again
- Talk to people, be open & honest and rely on the support of friends & family you trust
- The world will go on either without you for a day or two or with you working at a reduced pace
- Visual under the microscope, crude but showed things looked quite good
- FISH test, a genetic test that was looking for the Philadelphia +ve gene that added complications to my leukaemia. The result from that indicated that things look good
- Molecular test - this is the most in depth test and showed 0% leukaemia cells
Obviously this still needs to be monitored, biopsies will be conducted every 3 months, I am still on a lot of meds etc. but this is clearly amazing news and hopefully gives comfort to others that all of the above can work if you keep the faith, follow the professionals' advice, take your meds etc. and generally try and get on with things as normally as possible (i.e. being positive).
So I just wanted to let you know, thank-you all and obviously ask you to still keep me in your thoughts(!) so that this may continue and I can start real recuperation now.
I probably won't be be blogging anything significant from here on in, as to be honest I find that doing stuff around the home, helping Sarah with copious admin, staying on top of work/personal e-mails and of course helping with the boys is starting to turn full time again and quite tiring!!
I will be tweeting the usual mundane stuff about hospital visits etc. :-) but will include general updates on status etc. as part of that. Plus geek boy that I am will likely start turning some attention to interesting (well to me anyway) technology & gadgets...
Any please stay tuned if you can, thank-you again, love and peace to you, your families and all.