Burning the candles at both ends..

It’s been about two weeks since I’ve updated this blog and I know some of you have been wondering if I’m ok. Everything is fine (kind of) it’s just been a hectic two weeks.

Not long after my last entry, Ade and I went to Scotland to stay with friends for a long weekend. Ade played golf and drank beer/whiskey with a friend, and I helped another with her quest to find her perfect wedding dress! A few days after our trip to Scotland, I met up with friends for two days of Metallica fun with the opening of ‘Through The Never’, then we had two days of birthday celebrations for Ade. Ade’s birthday weekend was brilliant, it started on Saturday hanging out with a friend who was over from America followed by a surprise party I organised for him when I was in hospital having my transplant. The weekend ended on Sunday with another day spent with some of fantastic friends.

Saturday was really special, not only was it a big birthday for Ade (40) but it was my way of partially ‘paying him back’ for what he’s done for me over the past year, though I highly doubt there’s anything in the world I could do that will show just how grateful I am. The party had been planned since the beginning of the summer and most of it was done from my hospital bed. I spent months trying to get our friends to keep the party a secret and even now I can’t believe we all managed it because trust me, there have been a few occasions where the stress of keeping it a secret has got to me so much I was just going to tell him. I’m so glad I didn’t because the look on his face when he walked into the venue and saw all his friends was priceless. Although Ade isn’t a big fan of surprises, he was ecstatic and had a brilliant night!

After a fantastic weekend, it was back to reality. I woke up exhausted on Monday morning with sore legs, a nasty cold and a general feeling of malaise. I really didn’t want to get out of bed, least of all to go to my hospital appointment for the check up and nebuliser appointment. My check up went ok today and my consultant wasn’t too worried about my cold. She basically said that half the country seems to have a cold so it was probably inevitable that I’d get it and that it would take an age to shake off. However, she was a bit more concerned with my actual immune system. Since my transplant, I’ve been having twice weekly injections at home. These injections contain GCSF which helps my bone marrow produce neutrophils which are essential to fighting off nasty bugs and infections, and for some reason my bone marrow is producing it, but they’re not surviving very long which isn’t normal. Two weeks ago, my consultant suggested that I could have Graft versus host disease in my bone marrow where my new donor cells recognise my neutrophils as ‘foreign’ and kills them off. My consultant then decided that they would try another treatment to see if it would help my immune system settle in a bit better and booked me in to have a IV of immunogobulins. Immunogobulins appear naturally in our body but after chemotherapy/transplant, it can take the body some time to recover them, some people don’t and have to have immunogobulin infusions for the rest of their lives (I hope I don’t). So last week, I had my first infusion. I was quite unhappy about this as it meant having to have a cannula in my arm and fluid pumped into me, I’d really hoped I would never have to have something like this again after my transplant, the only consolation is is that it’s not chemo, just an anti-body being pumped into me. On Monday, I had a blood test to see if the immunogobulins worked and the test showed my neutrophil count was for the first time on a Monday, above 1! My consultant said that it’s too early to tell if the immunogobulins are responsible. On the basis of this, I have now been given more immunosuppressant tablets to take which will take longer to be weened off. I was really hoping that I’d be off them by now, it feels like progress has been good and now I seem to have taken a little step back. My consultant said not to be disheartened, I’m still doing very well but my new immune system still needs a bit of support to get it up and running.

After my appointment, I went to have my monthly dose of pentamidine and ventolin through the nebuliser. This nebuliser treatment helps protect my lungs from illnesses like pneumonia and bronchitis. The whole thing lasts just under an hour and is actually quite unpleasant as inhaling the drugs can leave a bitter taste, but with the cold I have at the moment, I’m thankful for it especially since we’re now entering the season where everyone seems to be coughing and spluttering.

In other news, I’ve had an interview with an occupational health nurse at work to discuss my return work and it has been confirmed that I’ll be going back on the 4th November with a phased return (i.e. building up my hours). I’m hoping by the new year I’ll be back full time, but that all depends on how I get on and if the likes of occupational health, my boss and my consultant agrees on it. I really can’t wait to go back to work, not only is it a step towards normality but to relieve boredom! I honestly have no idea why anyone would choose a life of doing sod all, there have been times over the past year I’ve actually felt my brain turn to mush and craved mental stimulation.

On that bombshell, I’m off to watch Air Crash Investigation! As usual, some photos for your amusement!

The nebuliser equipment I have to use once a month:

Ade with his childhood best friend Gareth at his surprise party. He too has been an amazing friend to me over the last year:

At Ade’s surprise birthday party with 3 amazing friends:

Posted by littlemisskillingmachine in Uncategorized Tags: allogeneic, allogeniec, cancer, donor, donor transplant, double hit lymphoma, GVHD, immunogobulin, immunosuppressants, lymphoma, neutrophils, Non-Hodgkins, SCT, stem cell transplant