There is something curiously intimate about being on a ward. This is with very simple things like bodily functions. The night chorus in this ward is complicated by a man with dementia, who on the first night urinated next to my bed and had to be talked back into bed by nurses at 4am. Every alarm is followed by him asking for the electricians to fix it.
There is also flatulence and sickness periodically as everyone struggles with treatment and their condition.
It’s also with more complex things, like emotional bleed. The patient opposite having a phone conversation with his wife. He’s been on the journey 15 months and she feels no one asks how she is, not even him. There is no privacy here, so when he finishes he tells me about it. He also admits she’s right. Cancer isn’t fair. People in the village ask after him. No one asks her. He has resolved to do better but also agreed this journey is tough on everyone concerned.
The patient next to me had a conversation with the doctor about his treatment not working. He’s reaching the end of his blood cancer and they have no more options. He is now looking into palliative care. He’s 70 and lives with his wife and they are making big and terrible decisions. He talks about his regrets and the things he wanted to do… But it’s too late now. I gather he was at work a lot. There’s an oft recited lesson there.
Finally another patient has an operation. It’s 52% likely to work. 48% not. He has no other options. Otherwise his gut will continue to abscess and he will die. The operation is high risk.
These are the emotional bleeds in a ward where you can see and hear everything. It is very humbling sharing these things with other people, whilst the nurses flit around constantly, and doctors make the big calls more sporadically. The job they do is amazing. Two of them cajoling the man with dementia to have a wash. Very patient ‘please don’t hit me.’ as they help him to the shower. They all care so much.
As to me. Nothing so radical. Probably the most well person in the ward. Certainly the youngest by about thirty years. We had a delay on rituximab as my bloods had dropped. So we took 10 vials of blood for tests. After discussion it seemed that my virus may have knocked my haemoglobin, so I had three more bags before rituximab.
Luckily we ruled out some nasties. Using the coombs test we worked out I didn’t have autoimmune haemolytic anaemia (my white cells were eating my red, rough cure, take out spleen). So we just thought virus in the end, or an antibiotic which they gave switched out. Time to wait and see if that works.
Then the Rituximab. This went…. Well. Four hours. Minimal reaction (bit of sickness, temp creep but not high). So a real win. Then I had Bendamustine this morning. With a heat pad (as suggested by Sari I think). This was much better and didn’t freeze my vein at all.
So all seems to be good. The counts are currently.
Hb 7. (Still low)
Platelets 142 (normal human normal)
Neutrophils 8.3 (super high, thank you G-CSF. This could be good for the reaction in 20 days).
Lymphocytes (where the cancer lies) 1.5. low normal and much lower than the 52 it was. This is good too.
All my other counts are looking good.
Finally they want to put a PICC line in. This will be semi permanent and run from the upper arm to the heart. It will mean far less canullas (which has been tough, my veins have had more hits than a junkie). I’ve had more than 150 needle pricks this year I worked out, probably around 70 have been failures and needed to be redone.
It does mean cleaning it once a week, probably by a nurse, so another visit. But it would make everyone’s lives easier when it comes to stabbing me and not getting anywhere. It comes with risk, (Pulling out, infection) but they seem keen.
I can have it under local and then an x-ray to prove it’s in the right place. That all sounds doable so I’ll go ahead with it.
So all in all I’m very lucky compared to the other stories I’ve heard during my stay. Dying people. People with tough decisions to make. All supported by the amazing team of nurses and doctors. It puts it all in perspective and shows how well off I’ve been to have indolent cancer.
Make sure you do the nice things you want to, like that takeaway tonight. Book that holiday (maybe not abroad…) Also ask how your other halves day was.
Finally if you know someone going through a tough time, ask their partner how they are. These are all good things to do and honestly if you can make someone’s day a little better then you’ve achieved something.