What happens after Chemo?



Apologies for poor quality of photo and the reflection of my hand.



I've talked alot about how my specific chemo regeime works but I haven't told you about all the other drugs I have to take to ensure that my body copes with the chemo. Before every chemo I get a nasty injection. When I say nasty I mean one that actually causes about 5-6 minutes of pain after it is injected. The nurses try to couter act this by slapping your arm after they have performed it. But it still causes pain.

Then there is the plethora of anti sicknes drugs. 4 tablets in total. I am lucky I do not seem to suffer with sickness during the chemo, but I have seen people vomiting while their chemo is being administered. It truely is horrible stuff. You cannot predict how someone will react until the chemo is being administered.

Once chemo is finished you get your bag of drugs. Yesterday, due to some of the staffing shortages I have mentioned before I had to collect mine from the oncology pharmacy. No great problem, it is on my way out, but it closes at 5pm and I was cutting it fine. The previous three chemo's I wouldn't have made it as my final infusion didn't finish til 5.30. As it is it wasn't ready for another 40 mintues so I was still waiting at 5.40.

So, when I get home I have to sort my drugs. Some have to be taken before food, some after food, some before a certain time. Some have to be taken 3 times a day, some 4 times a day and some twice a day. It is a real nightmare remembering what to take and when.

At the top of this post is a photo of all the tablets I took this morning.

The top two are the most important.

Morphine has to be taken 2 times a day, about 12 hours apart. This is slow release morphine and I can really feel it working now. I take this when I get up and before I fall asleep.
Paracetamol is standard over the counter paracetamol. No more than 8 tablets in 24 hours. What I also have to run alongside this is liquid morphine (oromorph) which I can take as and when I need it for 'breakthrough' pain relief. It works within 15/20 minutes and is amazing. The main problem is it is so liquid I need to take it with a syringe which looks a bit dodgy when you are out and about and need to take some.

The busacopan is a new addition this time as towards the end of this cycle of chemo I was suffering more and more with excessive cramping and discomfort. This has to be taken 4 times a day. I think that means Breakfast, Lunch, Dinner and before bed.

The next three are antisickness. All have to be taken with or around meals.
Domperidone is the nicest of the three. It has no nasty side effects and I can continue to take it if I feel sick through the whole of the cycle.
Dexamethasone is a steriod. Steriods keep you awake if taken to late in the evening. This I have to remember to take before 6pm otherwise I spend most of the night in fitful sleep rather than nice restful sleep.
These 2 I have to take for three days.
Ondansatron is another steriod. I have this before chemo and as a one of dose the morning after.

Finally Loperamide, better known as Imodium. I am sure you know what this is for!! However my dosage instructions are far more intense and to all intents and purposes I don't think it works. I take 2 after the first 'loose stool' and then 1 tablet every 2 hours, until things firm up. I normally only have to take this for 2/3 days as it is to counteract the evil side effects of the Irinotecan.

Finally I have my 5FU pump. Which some of you have seen and starts of as a hard tennis ball sized pump connected to my PICC line and gradually deflates over 46/48 hours when I go and see the most annoying IV nurse to get it disconnected.

So you see, chemo is much more than long day in Guildford!!!

Some technical stuff!!

My current chemotherapy regime consists of an infusion of Irinotecan, an infusion of folinic acid and a 46/48 hour infusion of 5FU. 

This is generic chemotherapy and works on a range of cells within the human body. Including my peritoneal tumour and my liver metastases.

There are also a range of cancer treatments called monoclonal antibodies. These work by targeting the specific proteins on the surface of the tumour, latching onto them and stopping the blood flow to the tumour. This stops the tumour growing. 

However they are not suitable for every type of tumour. I received the news last Wednesday that the histology, or make up, of my tumour means it is suitable for this treatment.

It means next Wednesday, I add another dimension to my treatment, and another level of side effects. 

But this is specific treatment, let's hope it works and Avastin can kick my tumours butt!!

The weakest link

Throughout all of todays activities the weakest link has been me and my crappy veins. 

After a lovely 6 hours of uninterrupted sleep, and then several more hours of dozing the failure of my veins to give up a drop of blood has resulted in me having to spend a second night in hospital.

After seeing my colorectal surgeon and his minions this morning, and maybe showing off a picture of baby Hope. He decided that he wanted me to have the blood transfusion that St Luke's had cancelled yesterday because the new HB level was worrying and we needed to stem the decline.

A blood transfusion should be a fairly simple straightforward procedure. This would be my 4th so I thought I knew what to expect. 

However you learn something new everyday and today's revelation was that before they transfuse the blood they have to do a crossmatch. This means that they need a sample of your blood to mix with the blood that they are going to transfuse and check it is not going to clot or react. Far bette for this to happen in a test tube, than in my body.

This meant that they needed one tiny little pink lidded vial of my blood. Could we get one, not before lunch. 

It reads like a bad joke, what do you get if you cross one secondary bowel cancer patient with crappy veins and low HB levels with 2 very experienced ward sisters in SAU? Frustration!!

I am now modelling several new bruises where butterflies (which are tiny needles) have been inserted into promising looking veins, the wiggled around a bit and no blood was forthcoming. I think there were 5 or 6 attempts this morning. I had more a patches than the Black Pearl!!

The last resort was to call an anaesthetist or Dr, but before that the sister had one last try, in the back of my hand there was a vein. This vein yielded enough blood to fill the vial and we rejoiced. I have never been so happy to see my blood.

This blood was o precious she walked it to the lab herself rather than rely on the normal systems. 

So blood taken, time to disconnect chemo. This also overjoyed me greatly as it meant that my blood transfusion could go through my PICC line, which means far less beeping when you move as you do not 'occlude' the pump so much.

Here we encounter another drama. Apparently it is fine for Tony to disconnect my cytotoxic chemotherapy pump in a hotel room in Cardiff and leave the sharps bucket knocking around the boot of my car for a week. But here, I have to be wheeled to the chemotherapy suite, where I am surrounded by curtains and the pump is disconnected all officially by an oncology nurse who is not used to this kind of pump as they don't deal with this type of chemo in East Surrey. Why I don't know, my life would be a lot easier if my chemo could be done in my local primary care trust, but that is a whole other story.

So back on the SAU, and time for the observations before the blood arrives. But that is rudely inteerupted by the arrival of my family. Perfect timing.

Here the nurses were superb. I needed to have my cannula removed as the blood was now going to be going into the PICC line, so the children went and hid behind the curtain while it was taken out. Then we needed to do my BP, O2, pulse and temperature. The sister was fab, she asked Isaac to read off the numbers from her machine and check that everything was ok. 

While we waited for the blood to arrive I enjoyed the freedom of not being plugged into anything, I cuddled and played  with my children and enjoyed the sense of normality they provide. 

The blood arrived and is decided it wouldn't hurt for the children to see what was going to happen. The sister let Imogen feel the bag of blood and how squishy it was and how it looks like ketchup!! Imogen asked how they were going to take mummy's old blood out and we explained that it is more like topping the car up with disease rather than taking away old blood and putting new blood in because I need my old blood too!!

More BP, O2, pulse and temperature checks with Isaac doing the reading and checking all the figures. We also checked Imogen's pulse and daddies pulse, but Isaac was not ready for that yet.

My first unit of blood finished just as the nurses hand over so the lovely sister was prepared for the night staff to start the second unit about the same time I would need my next dose of morphine. 

That didn't happen. Instead I am sitting on a new ward, with liquid paracetamol, considering making a complaint about one of the most uncaring members of the nursing profession I have come across. Someone who left me sobbing and screaming in pain on the floor and made no offers of help to me to move. & who told me that as I was complaining about the noise last night,I should have the decency to keep the noise down as I couldn't possibly be in that much pain. But that is a story for a later date. I need some time to reflect.