Post 2nd round of Chemo - 17th July to 6th August

 The discharge from hospital on July 16th was on the basis that I treat my time at home as if I am still an inpatient. As side affects hadn't yet hit me and my blood numbers were still high (the chemo will make these drop to a flatline where they then have to build back up) I had been allowed home but would have to take everything incredibly careful. I need to be on the lookout for any bleeding, temperatures, rashes etc, on top of coming into hospital as an outpatient 3 times a week minimum while I go through this vulnerable period again. It wasn't expected that side affects to be as hard as they were after my first round of chemo, as the first round was a chemo set called FLAG-IDA, while the second one I'd just had was just FLAG, no IDA, and the IDA was a very intense part of the chemo (if you remember from the pictures it was the red liquid). All the chemotherapy I'm on is intense to be fair, but this was the less intense, I also started my second round of chemo in a much better way than I started the first round where I was already really suffering from the cancer. So a lot of things were in my favour and helped to let me be discharged early (but on watch).

The weekend passed without any incident. My GCSF injections into my stomach used in order to stimulate my neutrophils, which is effectively your immune system, were still under way, being performed by my mum. Impressively she's done a very good job of it, I was a bit worried about being jabbed with a long 4 inch needle, especially if I had annoyed her that day, which is most days, but mum has as always been fantastic.

Nurse Catherine

Monday 19th July confirmed that my blood numbers were continuing to drop and that I needed transfusions. There were some delays at the hospital so I had to come back the following day to get my red blood cells. On Wednesday 21st July while back at the hospital again, this time getting platelets I was informed by my transplant specialist Emma that we had had good news regarding my bone marrow transplant. Three 10/10 donors have been found and work is in process to start contacting the best one for a transplant date of the 6th/7th September. I would need to have my 3rd and hopefully final round of chemo immediately prior to the transplant, so I'd likely be going back in as a proper inpatient at the end of August, and would probably be in for up to 6 weeks. The chemo looks to be the most intense yet, which I'm sure will be a barrel of laughs and may provide some good pics of me looking very rough. The donor is apparently German, maybe I'll become a more efficient person as a result, who knows. There was no need for me to be in hospital on Thursday, which I'm sure my dad was pleased about as I'm not allowed on public transport he's been driving me back and forth every day with my mum. On Friday at hospital I was topped up for the weekend, getting a bag of platelets and red blood, my neutrophils still remained at 0.00, so low that it doesn't even show up on blood test results. Until my neutrophils have been over 1 for a few days, I will be continuing with the stomach injections that Mum has been inflicting on me, great. I got my hickman line (central line) dressed, finished the transfusions and was back off home for the weekend.

Making what I can of the summer

Back at Hospital outpatients on Monday 26th I was tested with a high(ish) temperature of 37.6. A temperature spike would be 37.9 and above, so I was near-ish. As a result I wasn't allowed into the Haemotology Outpatients ward, and was instead taken to an infection ward. My temperature was monitored and I received more red blood and platelets. The temperature lowered itself throughout the day and I was able to leave around 5pm with a temperature around 37. Unfortunately when I came back to Outpatients on Wednesday the 28th, I tested again with a high temperature, this time of 38.2, which is a proper temperature spike. I was taken into a private side room and began receiving a course of antibiotics, antibiotics are aimed to be prescribed within the hour of a temperature spike as spikes are so dangerous and it is key to trying to bring those down as soon as possible as well as find the source of infection. Just before the antibiotics was hooked into me I had blood cultures taken from both my line as well as from a vein in my arm, the goal of which is to see if it is in fact my line that is infected (please no, as I would then have to have the line removed, and then have the operation all over again as it's key to have a central/hickman line during the transplant, so that would be a disaster), or if its an infection in the blood, cultures take just over 48 hours to come back with results. After the antibiotics were prescribed, I also received blood and platelets, and then antibiotics again, I was put onto a 5 day course for 3 times a day, I wasn't going to be going home. In a glimmer of good news though, my neutrophils finally registered on a blood test result, coming in at 0.02, which is still obviously minuscule, but if they continue on an upwards trend it would be good news.

It was obviously massively disappointing to be readmitted, however side affects to the 2nd round of chemo were practically guaranteed. And so far things have been more than OK in comparison to the affects I suffered from from the 1st round, so I wasn't going to complain. I was back in Waddington Ward, so I knew a lot of the staff which is good. I continued receiving blood and platelets during my stay, as well as IV bags of fluid to help combat the temperature, problem with these bags is that they last 8 hours, blood around 2 hours and platelets around 30 minutes. So I was continuously being hooked in and out of things during the day and the night, on top of the frequent observation tests at times like 2am and 5am, so the days all began to merge. Pleasingly my temperature spike never came back after Wednesday and by Friday my neutrophils were at 0.08, so still tiny but it looked like the come back was beginning to start.

Nurse Catherine in hospital with me.

Over the weekend I continued to have a number of transfusions, watched the Lions lose the 2nd test of the tour and finished my course of antibiotics and was eventually discharged on Sunday afternoon. By this point my neutrophils had hit 0.25, I'm still neutrophenic meaning that if I came into contact with someone who even had a common cold this would be really bad news, but hopefully would be hitting and surpassing 1.0 sooner rather than later which would suggest the 2nd round of chemo has worked. Once this happens, I will be getting yet another Bone marrow biopsy to see how it's all going in my marrow and should also be able to see people again like I did back in June after I'd recovered from my first round.

This week I needed another bag of platelets, the drop in my red blood cells has begun slowing, probably linked to the increase in my neutrophils which is great. On Wednesday 4th I had the great news of finding out that neutrophils were above 1.0, they had hit 1.39, with the normal target being 1.5. I also begun my testing for the transplant and had a CT scan over my heart and lungs, this is where you lay on your back and go through a Stargate looking arch which has a strange 2001 Space Odyssey voice telling you to breath out or hold your breath. Thankfully both my heart and lungs are still good, there are still remnants of the ground glass infection I had back from the first round of chemo, but nothing to worry about, so far so good. I've got several more tests next week as well as the bone marrow biopsy. The only bad news is that my number one transplant match is proving a difficult person to get hold of and isn't responding to calls and emails from Anthony Nolan, he's probably still bitter about England beating Germany and doesn't want to donate to me any more. So now they're looking at my 2nd best match and in communications with him, he too is a 10/10 match so nothing for me to worry about too much really, and is also funnily enough German. Hopefully he's more responsive, I am still on track for everything to be happening on 6/7th September which is good.

I'm afraid I can't let you have that transplant Adam

On Friday 6th August my neutrophils had hit 3.16 which is amazing, I now no longer need the stomach injections. I did still require a pool of platelets, but I'm hoping that will be my last transfusion prior to being admitted to what I hope will be my last round of chemo at the end of this month.

Thankyou everyone who has been in touch with me, it continues to be so helpful and means a lot. Please do donate blood and platelets etc if you can, as I really am draining the NHS dry this year.

Is Dec brushing his teeth or joining the Anthony Nolan register? You decide!

All links for everything can be found here; https://linktr.ee/AdamRiley?

Joining the registers and donating blood really is so valuable to the NHS and people in similar positions to me.