every day's and endless stream of cigarettes and magazines
So what’s it like being a cancer patient? For me it is perhaps still early to tell but every day I learn a bit more and survive a bit better.
I’m now 6 Chemotherapy sessions down and 12 Radiation sessions complete so not quite half way through treatment.
I can tell you what it has been like but the future still holds many unknowns and I have to wait and take them as they come. There is no running away from this.
Monday - Friday
My days Monday thru Friday are taken up as follows:
When I arrive at the center I report to the front door (in protective facemask), have my temperature taken and get booked in. I then wait in my car until called to come in for treatment.
Monday 11:45AM Hope Radiation Center - 9 miles away - treatment only takes about 5 minutes but delays going in are common so probably head for home about 12:20PM
Tuesday 10:AM - Hope Radiation Center - Chemotherapy. Once called in have weight and BP/Pulse measured and the off to the treatment room. My life port get connected and I get a small bag of Decadron Steroid followed by a bag of Benadryl (to stop any allergic reaction - also acts as a snooze juice!) Then the big one which is an hour drip of Cisplatin.
If things are running late then during my drips, I will be collected and taken through to the radiation room for my radiation treatment, while the drip continues.
Once all complete, the life port is bandaged over ready for the next day
Wednesday 10AM -Hope Radiation Center - Chemotherapy as yesterday and Radiation as yesterday. Lifeport is bandaged over for Thursday Blood Labs. Normally Wednesday is also Doctor Day when I get to meet Dr Murshed and we discuss progress, problems and can sort out any new prescriptions etc.
Thursday: 11:45AM - Hope Radiation Center - Radiation Treatment also Blood Labs Day. After radiation I get blood drawn for lab purposes.
Friday 11:45AM - Hope Radiation Center - Radiation Treatment.
Saturday - Sunday
Saturday and Sunday brings a well earned rest!
So, that being the routine, what is it actually like and how has it been so far.
Tiring is the first word that comes to mind. My body is being poisoned with Chemo drugs and dealt large doses of radiation. My immune system is being destroyed, my ability to fight sickness is being eroded. Exhausting may be a better word. By Friday PM I am toast - literally.
Up to now for me the major symptoms have been headache, nausea, some vomiting and mouth pain.
I have strong pain meds (Oxycodone - Acetamin 7.7 - 325) which I take every 8 hours. A also have Prochlorperazine 10mg) for anti-nausea every 8 hours as needed. On Chemo days, I get anti-nausea in my drip feed so stay off the anti-nausea pills until later on in the day but I find on days of Radiation only, even if I take the pills I still don’t ever feel great.
Strangely enough my best days are my Chemo days as the steroids give me a lift and I just seem to feel a lot better.
Today should have been Doctor Day but it was put off until tomorrow so I can discuss my nausea issues and see what can be suggested. Nausea is horrible. It takes away my appetite and makes me feel down and tired. I hope it can be fixed….
My mouth is sore. Even with pain meds I have a constantly sore throat and what feels like mouth ulcers around my throat and sides of my tongue. I get very dehydrated and my mouth gets very dry. Sometimes it is hard to swallow. I need to keep constantly consuming water to keep my throat lubricated and less painful.
On the plus side one of my original issues of nasal drip seems to be abating and is not nearly so noticeable, I assume because the tumor is shrinking.
Feeding can be an issue. So far I have mostly stuck to a regular diet and we are learning what is good to eat and what isn’t. My taste buds are changing and I have to be wary of anything which may taste metallic, acidic or spicy.
Linda is being great and making me plenty of soups, Mince and Tatties!!! (Yum!!), beef stew but we have mostly given up on things like grilled chicken and pasta as they are not so easy to swallow.
I have large supplies of Ensure and Boost Plus which contain all my needs to the day by drinking about 6 bottles, but what I try and do is eat some regular food and some liquid food throughout the day. Linda has also found some amazing milk/fruit drinks (high calorie) based on an Icelandic recipe and some super yogurts which are not loaded with sugar.
I do several cups of tea per day but am only otherwise drinking plain, filtered water.
Evening time is shower time. If my life port has been bandaged over I need to protect it from getting wet so that needs to be covered in plastic wrap and taped down.
I have a feeding tube in my stomach! The tube is about 9 inches long and is bandaged to my front in a little coil. The tube has an entry port and a clamp to stop anything coming out but there are about 3 inches of stomach content resident in the tube and this need to be flushed out every evening after showering.
It isn’t as bad as it sounds, I just un-bandage it, fill a syringe with warm water, loosed off the clamp and open the port and a quick sqoosh and the water flushes out the tube. Remembering to tighten the clamp I then bandage it up again.
I’m hoping never have to use it for feeding but in the weeks to come, if things get too painful/swollen then it is my survival backstop to get food in.
My saliva has changed. It feels like runny snot and sometimes I have to spit it out in great snotty lumps - it can get very viscous. Not nice. I am also having to brush my teeth several times per day as the radiation treatment is not good for them.
I’m not allowed out in the sun! Sun and cancer treatment is not good. A quick walk to the mail box is ok but definitely no sunbathing or extended periods of skin exposure. Hell, we live in Florida so I’ll get all the sun I need after this is over!
How is my mood? Linda would more likely give a truer answer but given what I’m going through I would say not too bad. I do get a bit depressed when I am feeling unwell and do get a bit grumpy when my head hurts and or am tired but I would imagine most people would feel the same way.
I can have a laugh and a joke when I go for treatment as all the nurses up there are wonderful and I’m in love with them all… 😉
Sometimes when feeling unwell I feel the length of time this treatment is taking and the distance still to go and that can be depressing. On the other hand I also remember how far I have come, how the medical bills are being paid and how all the many decisions I/we’ve had to make have turned out the be for the best.
I am getting better and I feel incredibly blessed and thankful for all the support, help, assistance, kind words, amazing people who have all had an influence on myself and Linda. It has not been an easy ride but (touch wood) it has been doable and here I am heading towards half way and feeling incredibly positive about the future.
I’ve also been blesses with having some wonderful clients who have kept a steady stream on new work coming in for me to do. Nothing overwhelming, but enough to get me doing some website design and website building and that for me anyway, is therapy in itself.
(twas on the Monday morning the gas man came to call, the gas tap wouldn't turn, I wasn't getting gas at all...) Flanders and Swann