Before I start this post, I need to offer a health warning to family and friends: I’m ok, there’s nothing to worry about, I just had a bit of an emotional blip; but I think it’s important to be honest.
Day 39 first day home
I was looking forward to being home for 2 reasons: firstly a chance to relax again and regress back to childhood playing computer games while being waited on by Liz. Secondly there was a family gathering planned on the Saturday in aid of my Aunty’s birthday and it would be a convenient excuse to catch up with a bunch of relatives who I hadn’t seen for a while.
My blood counts, as noted previously, were on their way down, so the district nurse had been booked to arrive daily to administer the Lenograstim injection. On Friday the nurse arrived about 10 minutes before my Dad who kindly offered to make a cup of tea and finish the washing up. When she left, he foolishly asked if there was anything else he could do. Several journeys to the loft later it was time for him to go so I felt a little guilty that we hadn’t had time to catch up, but very grateful for the help.
otherwise the day was fairly un-eventful apart from completing a level of Halo!
Saturday was mostly spent sleeping and relaxing in preparation, I was feeling fairly well in myself but a little weak so took it carefully walking to and from the car and sloped off for a bit of a sleep on arrival. The party was good, nicely laid out with a good spread of food, music which the aunties could dance to and I managed to catch up with most of my relatives. My mum’s cousin came over with his wife who had been through a similar experience 4 years previous. They offered support and said that there’s a light at the end of the tunnel, a sentiment which was appreciated.
I generally follow a more scientific than theological ideology, but the words “I have been praying for you” spoken by a couple of relatives was also greatly appreciated, especially knowing that it was both genuine and heartfelt.
Even though I spent the time sitting down, I realised how tired I was when I stood up. To those who didn’t know me, I must have seemed like a drunken old man stumbling to bed early, but I felt a sense of achievement all the same.
During Sunday, I became aware that I had taken a couple of risks. I like to think of myself as a ‘pragma-realist’ I like to form decisions and opinions when I have all the information, although I understand that sometimes ‘all’ the information is un-available or difficult to obtain.
The risks therefore were as follows:
1: I hadn’t had a blood test since Thursday and the next was due Monday (I was aware of this on discharge, but decided not to press the point in case of jeopardising my release) this meant it was difficult to know how low my blood levels were.
2: I went to a party full of people in a public place. (I had discussed this with the doctor who said this might be ok, but again hadn’t been explicit about it with the nurse or doctors on the day of discharge in case it would jeopardise my chances of being able to go)
In the afternoon, I had started to feel quite weak and feeble so went to bed early. As soon as I started to drift off, my mind started wondering. Recalling a comment the doctor had made on Thursday; “I can feel the lump here, it’s much smaller than before,” began the start of my panic. Until this point, I had thought it had gone completely and suddenly could feel it again myself. On top of this, my skin was feeling really cold to the touch and I was sweating which is usually a late symptom and should have stopped by now. To top this off and noting that I’ve experienced every type, size, shape and colour of fluid and solid discharge during my treatment I had uncomfortable bowel passing which was quite bloody and I had strange blotches (like red freckles) appearing on my skin. Adding all these together I started for the first time to think of the ‘what ifs.’
The hardest thing to console myself over was not all the problems I’ve had or things I should have done, it was all the things I hadn’t yet done. As much as I’m comfortable with the experiences I’ve had so far and am confident that I have learned a great deal during my relatively short life, I feel I have a lot more to achieve and am capable of offering more. Obviously no-one knows what’s round the corner, but I would be deeply unhappy if I had to leave without having made a positive contribution to society, even in the form of offspring. With all these spinning thoughts and imagined conversations with friends, family and colleagues flashing through my mind I started to well up. As a pragmatic bloke the first tear dropping down my cheek is always a little embarrassing, but it happens; I’m not sure why we feel the need to instantly quell it, but perhaps that’s our way of coping. I managed to stop the tears before waking Liz, but felt a little refreshed when I woke up. Perhaps it was just a case of the Sunday blues.
Return to hospital
On Monday the nurse came round to take blood tests and flush my line. I got up late as I was extremely tired, so I asked Liz to bring her (and all the kit) upstairs. I spent most of the day asleep although managed to make it downstairs in the afternoon. Mum had the day off work so cooked lunch for me and Liz which was nice. I watched a bit of telly and sloped back off to bed. Nervous of the bleeding I decided To avoid going to the toilet before bed.
Tuesday morning, I had to go to the toilet. By this time, based on the discomfort and a bit of help from the NHS website, I was pretty sure it was heamorrhoids. I decided to call the hospital to see the best course of action. The nurse said that my blood counts weren’t back yet but that I should book in with the GP to get them checked out. She prescribed me cream over the phone, I was tempted to offer Skype but decided against it! A couple of hours later at about 16:30 I had a call from the hospital saying we need you to come in via A&E the blood results were as follows.
Heamoglobin – 76
White blood count – 0.2
Platelets – 10
Neutrophils – 0.0
I am now back in hospital receiving a bag of platelets (low count explaining the heamorrhoids, which the doctor here has actually said is an internal tear or fissure and not piles after all) I have a further 2 bags of blood to follow and the nurses were surprised I managed to get away without further or worse symptoms! I’m hoping they’ll send me home once I’ve had the transfusion, but recent experience tells me that’s anyone’s guess!