WFH with Cancer — Weeks 5 to 8
So, round 1 drew to a close and I was off and running on round 2. I knew what to expect (sort of) this time around, and apart from the change in medication it was service as usual.
I had gotten into the routine of in for 8:30, get bloods done, meet the nurse and/or doctor, and then in for the injection.
Week 5, because of the rash and the problems with septrin, I met with the doctor who examined me to make sure there were no other issues. I explained about the stiffness in the legs and he went over what my fitness level was prior to starting treatments etc. I was a fun runner, doing 3 x 5km runs a week, walking with the family most days, and generally getting out loads, but since the operation even hitting 3,000 steps a day was difficult. The doctor said that as I have started back walking the muscles were just getting stiff after a longer than usual period of not being used, but to keep an eye on them and massage them after any walking or exercise. He also said that due to the increased amount of water I am drinking, there is also a water retention that could cause swelling but as long as there are no longer term issues he was fine with just leaving everything as is. If there was a continued swelling then they would look at an ultrascan to see if there was a blood clot causing the problem (one of the many side effects of the treatments).
The other change was to replace the septrin completely now with a monthly nebulizer starting from week 2. This would give me the antibiotics that the septrin would usually give, but monthly and directly into my lungs instead. The medication is called Pentamidine and it takes about 1 hour to administer.
My MRI results were also back and thankfully showed there were no other issues anywhere else in my body. The only concern was the tumor in the left arm, but apart from that all else was fine.
My bloods showed that I was slightly anemic again so green veg and meat to get those iron levels back up, and then I was off for the injection and then home.
For the rest of the week I was tired over the weekend, but there was no significant rash on my body which was great. It showed that the septrin was the root cause and oddly I also did not have any headaches this week either. However my bowel movements were not great so again the steroids were the cause of that, and I continued to drink my prune juice with my breakfast. Regular naps again helped with the tiredness, and work continued to check in and support me along this journey.
Week 6 was to be a new experience. After my usual routine, I met with the nurse that talked me though the plan for today and what was going to happen. Pentadimine is one of those drugs that is really well controlled and for administration of it, the nursing staff lock you away in a well ventilated room on your own for the hour and leave you there on your own. I thankfully had my headphones with me to listen to a podcast or 2, so was set for the lonely hour. My injection had been done before hand, and the nurse setup the nebulizer for me and gave me a quick guide on how to put the liquid drug into the system and how to breath though the mouth, and out though the nose. The nurses deal with a lot of radioactive materials on a daily basis, but for this drug they are not allowed to setup the drug for use as over exposure to it could be damaging to the ovary's, so its down to the patient to actually do the administration itself.
You are given 2 drugs. The 1st simply opens up the airways and readies the lungs to receive the drug, and takes about 5 minutes to complete. This is done using a standard mouthpiece. The other drug is administered using a handheld breather and takes 30 minutes. The rest of the time (25 minutes) is basically to allow the air in the room to be cleared and filtered before the next patient is brought in, and also to allow your lungs to return to normal and that you are not exhaling the drug in proximity to others. Again, considering the levels of radioactive materials I have been given, no superpowers…. Then it was off home to allow the treatments to complete.
Now the only way for me to to describe the nebulizer is by referring to movies. So if you watch any movies or tv shows based in Turkey, or have a Turkish based scene in there, there is usually a group of people smoking a Turkish Pipe or Hookah. This is basically what I was doing for 30 minutes. It gurgled, smoked, evaporated the drug into a vapor that I then inhaled, and it felt odd. The other thing was from time to time I had to move the actual nebulizer pump back to its starting point as it was moving by itself around the table it was sitting on.
For the rest of the week the rash came back slightly around the injection site, but apart from that everything was somewhat normal. My productivity on the Friday was really good (thanks to the steroid) and I found it hard to sleep both the Thursday and Friday of this week. I was also very hungry and thirsty on the Friday, and very talkative and hyper too for a few days. That lead to tThe weekend being very tiring. I had a few naps, and continued them during the week too. Seriously, the best thing that was prescribed to me.
Legs were fine this week, and actually extended one of my walks to 45 minutes this week which was great. I am slower than I used to be, but considering the lack of regular exercise over the past while, I am fine with just getting out. The weather also helped. Again bowel movements were off, but eventually that resolved itself. Ah the joys of treatment that nobody wants to talk about…..
The new side effect was an odd one. I had a craving for a bacon roll. When I told the nurse this she said that its the salt that my body wanted, and it knew that bacon was full of salt so that was what I needed. I did manage to get a bacon and sausage baguette with brown sauce (don't judge me) and loved every bit of it. Again the weight was up and down this week. 1/2 a stone up and down from the start of the week to the end. The exercise was definitely needed to make sure that was being kept under control.
Again this week there were no headaches or pain. Treatment was getting into its groove and I was able to kind of feel somewhat normal.
Week 7 then came around and it was back to the hospital for the next treatment and also the second round of Zometa (the bone strengthener). This time around it was only 20 minutes to get it as there were no side effects from last week so they were able to speed up the IV Pump to administer it quicker for me. Bloods were all fine and next week I will get the paraprotein checked so we can see how things are progressing with the treatment. All in all it was a quick turnaround in the hospital this week, and I was out within 4 hours.
On the Friday I had the surgical review for my arm and the xray showed that the top of the bone was getting stronger, the nail and screws were holding well and that the top and bottom of the bone was starting to join again and build up the outline of what a proper bone should look like. The doctor was really happy with the progress (only 2 1/2 months since surgery) and gave me the all clear to start some more physio exercises, and also to start doing short drives in the car again too which will take pressure off Kim now that the schools are starting back. It was such a relief to hear that this morning. Still need to keep the arm in a sling when out in public as a deterrent, and will have another review in 6 weeks.
Final week of Round 2, and things were looking up. Tiredness and the usual problems with waste matter was all that occurred this week. I was hungry a lot, but getting out in the car really helped to lift my spirits. Also, Andrew went back to school and soccer training and it was great to see him running around with his friends. The downside of being back in school however was more people seeing me with the sling and asking what happened. There is no nice way to tell people you have cancer, so the direct approach, while shocking to them, is the go to way for me. Giving them the fact that I am fine, and that its “treatable not curable” works and once they are over the initial shock then everything falls into place. Everyone has been supportive, knows someone who has gone though, or is going through cancer, and is happy to help when needed.
Thursday morning at the hospital was just bloods, BP etc, and then the injection. No other drugs needed, and I get my 1 week break from the Revlimid too. My doctor also gave me the results of the ParaProtein test that's done monthly, and it was very surprising. As I said before, I was 1/2 way into the levels they usually get when they 1st see patients, so my level was at 19% to start with (usually its 40% or higher) so I was starting at a good place. The goal is 0, but realistically after 16 weeks they want to get into single figures. Today, I was at 8.8%. In just 8 weeks I had hit the single figures.
Naturally, I looked back over my notes, and created a graph to show you all how its going. Such a relief to see this working after only 8 weeks, and feeling great too.
So as we draw round 2 to a close, I have to say that this round was a lot easier on me. Not sure if it was the change of med, or just that we are all getting into the swing of the weeks and what to expect, but the last 4 weeks have flown.
Side effects of note really were down to tiredness again, but work have been pushing me to take those breaks and naps, so they are helping. You do have restless nights (drinking a lot of water during the day does not help), but the weather is cooling down so sleep will hopefully come easier over the next 2 rounds, and the main issue I had was with the steroid just keeping me blocked up for a few days (but prune juice and strong coffee can help shift that). Another one to watch (especially heading into the winter months) is the steroid also gives you a sore throat for a few days. It generally clears up by the Monday, but you will feel a bit raspy for a day or 2 so do be aware of that.
Finally, I wanted to share with you a conversation that I overheard in the waiting room that has annoyed me more than anything else. A gentleman who is 2 years into his treatment was talking to a friend and said that he had to move his treatment to the Thursday morning to accommodate his job. He usually had a 12pm appointment for bloods, then 2 hours later would get his injection, and be gone with enough time to get to work. Last week there were delays, so at 3, and then 3:15 he asked for updates on when he would get the injection, but at 3:30 made the decision to leave. He thankfully arranged for the injection the next morning. Turns out that his employer had already reprimanded him for being late when treatments went over time and he was late for work.
The hospital moved his weekly appointments to suit his employer to the morning time instead, but this is just not right.
This should NEVER happen. Employees are your most important assets, and for someone going though a stressful time because of cancer or any other illness, the employer should be accommodating, understanding, and help out were necessary regardless of the size of the company. This could bring a lot of bad press to a company when customers hear that they are treating staff in this way. Now if the employer was going though treatment do you think the same pressure would be on them to get into work on time regardless?
It does not matter your role or where you are in the work pecking order, your health is the most important thing you have.
What you do you think of this?
