Since the news about the Rituximab. My life has been in something of a holding pattern. The blood transfusion I had nearly four weeks ago has been fading and with today’s blood test in preparation for tomorrow’s next transfusion my Hb is back down to 4.6.
Accordingly I have been in bed most of the last week. I have been put though, for the MRI scan on my head (no results yet). For those of you nervous about a MRI because you’ve never had one before, don’t be. It’s pretty chilled out with sweeping fields shown through a screen which looked majestic. Probably. I had to take my glasses off so it was more a wash of green and blue that made me feel a bit weird. I just closed my eyes and listened to the radio, as well as the gentle clanging of the machine which was like an elderly elephant playing with a bucket.
So today I had a blood test and then had to go to a different hospital to have the second vaccine. (They moved the vaccine from Ipswich to Colchester on Friday). There was some minor concerns as they rushed the blood test results to me to make sure my platelets were fine and I wouldn’t bleed too much, but I got the results in the queue and at 67 they are pretty low but ok.
The vaccine was fine so far, and I didn’t have any side effects from the first. My saliva gland has been inflamed for the last few days and this has been painful, but I don’t expect this to interact with the vaccine. Given I’ve had no immuno response to the vaccine I’m not sure if my dodgy immune system will get much from it, but I live in hope.
The hardest thing though was the walk for the blood test, probably about 800 metres in total, and with a Hb of 4.6 it was as hard as any race I have done. The lady taking the blood clearly though I was about to die and was super nice to me, and again I got a little bit teary. So another lesson is, if you have Hb of 4.6, platelets of 67 and anaemia you may be a little weepy.
The same happened in the bath on Saturday. I had been playing with the kids some in the day and just felt I’d had enough. That it was all too much and that I had no more to give. I had a good solid hour cry whilst Jo put the kids down. I know I’ve mentioned tears a few times but I think it’s important for everyone reading this who has lymphoma or another condition to know it’s ok to cry. Don’t feel shame. It’s hard and sometimes it pushes you beyond where you feel you can cope. You do get back from it though. These blogs may appear to show dry humour and facts about my condition, but I’m as human as you or anyone else and sometimes it gets too much. So if that happens to you, it’s ok. Honestly. Even if you are a man and feel it’s not macho. Just let it out. This kind of thing can be hard.
So yeah, life’s been a challenge this last week as my blood has been running down. I’ve kept going as tomorrow I get more blood, I’ve now had my second jab, and in a week or so I can start some treatment that may give me at least a mid term solution. Having been to the hospital and for blood tests no less than seven times since my last transfusion a couple of days shy of four weeks ago it will be lovely to have a break from my amazing visits to the NHS, as kind and efficient as everyone there is.
For those of you who don’t know, I also part own a company called http://www.nutbourne.com with Patrick. Luckily we’ve grown the business to about 27 people so it’s not just us and there had been cover Everyone there has been great covering for me for the last month or so, and honestly it’s taken a great weight off my mind. If I’d had to be there as well I’m not sure how this would have gone.
We also have had some very kind friends and family. Max and Madelyn for innumerous driving, Cooking brags can go to Katy, Freddy, Patrick, Helen, Sam and Rob, Lizzie and Clare Derby (who dropped off a king’s ransom worth of frozen food). And also Gemma and Tom for sending Jo some cocktails in the post, which frankly she needed this weekend. My Mum also has had the kids for a couple of days and that has been great as life has not been easy. Still the end is in sight (and in a good way) so fingers crossed tomorrow goes well and I finally start treatment next week.
This was always going to be a tough period and it has shown how important it is to have great people around. But also to admit when it’s hard. It’s tough to put your hands up and admit frailty and I want everyone with Lymphoma or something else troubling them to realise this. Some days are good. Some bad. Others downright ugly. You can and will get through it, and you can’t be strong all the time. That will break you more than letting it out when you need to.
Thanks all. Much love.