I’ll be posting status updates and general bits and pieces in the blog here… check back soon for updates!

Please sign this open letter!

NHS England announced at the beginning of July that it would not routinely fund second stem cell transplants for patients with blood cancer or blood disorders. This is so wrong and so very short sighted of our dear health minister Hunt and co. Many people who have gone through 2nd stem cell transplants are alive… Read more »

The Allergy Incident

So here I am after cycle 2 of Brentuximab. Of course, in the soap opera that is my life there’s been more drama… 2 weeks ago I noticed a rash on my lower arms. Wasn’t itchy or bothering me so took some Piriton (which didn’t seem to help) and showed it to the docs the… Read more »

What a difference a day makes

It’s been a long while since I’ve posted. But so much has happened since the 10 May! So this is a fairly long post… First off, after my all clear scan 5 weeks ago there was nothing much going on and I’d made the decision not to blog unless I actually had something interesting to… Read more »

Don’t look forward, look up

Today was clinic day. Time to get the results of the recent PET scan. I have learned not to expect anything, as I have been wrong before. On the roller coaster ride that this is, its best not to look forward. Rather look up, enjoy the moment …and take it as it comes. Today the… Read more »

PET Scan done, now it’s a waiting game

PET scanner

Went over to Jimmys for the PET scan this morning. You can’t eat for 8 hours prior to the scan so no breakfast or coffee for me. Made sure I had my fill last light before going to bed. This morning it was just bottles and bottles of water (you’re asked to tank up as… Read more »

Stem Cell Harvesting – It’s in the bag!

stem cell harvesting

Yesterday’s stem cell harvesting couldn’t have gone better! Arrived there bright and early and had a blood test to see if it could go ahead at all – to see if there was going to be enough stem cell floating around in my blood to even consider the harvest. We were asked to come back… Read more »

DEFCON -1 – Stem Cell Harvest Day Looms!

So it’s really just dawned on me that tomorrow is the day I’ll be going to St Jame’s for my stem cell harvest. And possibly Wednesday. And possibly Thursday. Depending on whether the harvest is successful, i.e. how many stem cells are floating around my blood over the next few days. I’ve been injecting these… Read more »

Post ESHAP 2 Day 12 – Sensitive Everything

So body not feeling so good 12 days into this one. If I can remember its very similar to the last cycle at this point: My scalp/skin/mouth/gums all quite sensitive. Taste buds a bit screwed up. Appetite is good but food not tasting how you’d think it should. My stomach is not acting normally (I… Read more »

POST ESHAP 2 – Early Starts, blue skies and snow

Hey so I’ve woken up, the sun has not long done the same, theres blue sky in distance …and its snowing..? Another rubbish nights sleep for me – was tossing and turning all night and had some pretty bizarre dreams. I had to take a second Lorazepam at around 3am as I know without it… Read more »

Post ESHAP 2 – Another trip to Jimmy’s

Been feeling pretty strange today. Woke up at 5am feeling refreshed, by 11am I was quite tired and ‘wired’ – presume it’s from the Dexamethazol steroids (which Im glad to say are now finished, took the last 2 of my pack this morning). Emotions a bit all over the place today as well. At least… Read more »