The car is ready, Mother is coming to dog sit. It’s going to be a long day at the hospital. Husband has been told to bring an overnight bag in case he has a reaction to the drugs. He insists on using the stairs up to the unit rather than the lift. I wish he wouldn’t. He says he wants to use the stairs while he can. I guess that’s that then 🙂 .
We walk into the unit at just gone 8 am, not sure what to expect and not wanting them to have wait for us. The nurses seem surprised to see us quite so early but very pleased.
We have to wait for the consultant to discuss the likely side effects of treatment and get Husband to sign the consent form. He gives us a rather brutal pep talk: ‘You will experience side effects – it’s just the way it is so you have to get on with it. You will get constipated, you will lose your hair, you will get tingling in your fingers or toes and that’s irreversible’. Husband is encouraged to tell them if and when he experiences any side effects but the doc pulls no punches: this stuff is toxic. Just in case we hadn’t realised.
A nurse puts Husband’s hands under a warming gel pack on a pillow – it helps to warm the veins up before putting the cannula in. It somehow makes him look very poorly. The dingy light in this oh so friendly and professional but desperately in need of a makeover corner of the NHS isn’t flattering either 🙂 .
We meet someone who reacts badly to Rituximab. She very sweetly tells us not to worry, that her reaction to the drug is unusual and even she knows that the drug is worth it. They have to give it to her as slowly as possible – 15 ml per hour – over 24 hours. She is painfully thin and clearly very ill but this drug she dreads having also works well for her. She may hate its temporary side effects but the cancer hates it more.
W, the patient next to Husband, takes us under his wing and explains that the drugs will arrive in orange cool bags but that there is a delay of 3 hours or so today because the pharmacist has been called away to an emergency. Apparently the drugs are usually made on demand, when they know that patients have arrived and are well enough – they can’t afford to waste such expensive drugs. Chemo is scary but all the waiting is hard too.
The ‘exciting drugs’ as the nurses call them arrive 🙂 . They’re covered in black bags – very kick ass Darth Vader :-). Apparently it’s because they’re light sensitive. The Rituximab has arrived…
They start the dose slowly, at 25 ml per hour. 30 minutes later and no side effects so they up the dose to 50 ml. He’s feeling a bit light headed (that could be due to the warm and airless room) but fine, snoozing on the rather shabby but fortunately comfortable recliner chair.
Lots of patients are sleeping through parts of their chemo. I’m not sure what I expected from the Cancer Unit. There are people at various points in their cancer but there’s a sense of camaraderie and good humour that I hadn’t expected and people are just getting on with it. The fact that they are reading, singing and watching sport on tablets normalises it a bit.
Cancer isn’t normal, it’s aberrant, cells are going haywire. But one can impose a degree of normalcy – for a while. Cancer isn’t ruling that unit, even if it is the reason it exists.
Husband has a brief moment of being really out of it and admits ‘it was quite pleasant’ 🙂 .
One of the chemo nurses warns us that chemo can control life if one isn’t careful, that it’s important to carry on with life as much as possible.
Husband is concerned that his face might swell with the steroids but is reassured that he isn’t taking them for very long so it probably won’t be too bad.
11.50 – His temperature’s up a bit – 37.1 – but they’ve upped the Rituximab rate to 75 ml per hour.
12.20 – rate upped to 100 ml 🙂 then 10 minute saline flush.
12.45 They’re going to give him the first lot of chemo while they wait for the full dose of Rituximab to be made up. Apparently this morning’s dose was a test dose, to see how he tolerated it.
The Vincristine is being given. Scary. This colourless liquid is chemo. It’s poison. The nurse stays the whole time in case it leaks – it’s a serious drug. And it’s going into my husband’s veins.
‘Wow. I can feel this one’, comments Husband. He can feel a slight burning sensation but says it’s not painful. Apparently it’s nasty on the veins so they flush it through with lots of saline.
We’re told that it takes 24-48 hours for the maximum side effects of Vincristine and Cyclophosphamide to manifest. If people are going to react to Rituximab it usually happens in the day unit. Steroids help.
The Cyclophosphamide is injected into the cannula – this one can cause a metallic taste. In the scheme of things that may be small but it sounds miserable. We have no way of knowing which of the smorgasbord of side effects he’ll experience. We just have to wait and see. We should be getting good at that…
We pick the chemo nurse’s brain. Are citrus fruits okay as long as he doesn’t have mouth sores? Yes.
If he gets constipation can he take a laxative? Yes – anything – Lactulose, Senna.
We learn the total dose of Rituximab today is 700ml.
1pm The main dose of Rituximab starts at 40 ml per hour then goes up to 50 ml at 1.35.
2pm His temperature is 36.8 🙂
We’ve just learned that someone booked chemo yesterday and didn’t turn up or let them know s/he wasn’t coming. The chemo had been made up – thousands of pounds wasted. Heart breaking.
There’s a surprising amount of laughter in the Chemo Unit as we chat to other patients. A visitor sings along to Wham’s ‘Last Christmas’ in the background. Oddly perhaps we find far more genuine festive cheer here than in the rather forced and frenetic environment of the shops we have to visit for food. I suppose we’ve all had to slow down, even stop life to some extent in order to face cancer or our loved one’s cancer so we’re inevitably focusing on the important stuff.
They’re giving Husband an anti sickness drug as part of one of his infusions. They’ve been tweaking treatments over the years to try to find what works best for most people and this is it.
4.45 and the Rituximab infusion has finished so now he just needs a saline flush.
Husband has a natty little carrier bag of drugs to take home… Anti sickness tablets – oh yes please. ‘If you start to feel sick don’t do nothing hoping it will go away – take something’. Will do!
Allopurinol – chemo toxins can crystallise as they leave the system – like gout – it depends on the tumour burden as it breaks down and leaves the system. We’re learning things we never thought we would and never wanted to but hey.
Prednisolone – 4 more days of steroids – 20 little red tablets for 4 days at breakfast time – so he isn’t still wired by bed time.
He graciously takes the lift down to the round floor 🙂 and I drive us home.
Side note: Husband ate well and even managed to enjoy mince pies and cream 🙂 .