Monday 9th September, 2013
I usually see my haematologist prior to chemotherapy but he was on holidays so I’d seen the doctor who was covering him on the Friday before. That Friday was actually quite a busy day. A blood test in the morning to check on those damn neutrophils, a quick lunch with an old work colleague I hadn’t seen for a while and in to work to attend a cardiac genetics meeting. It was good to catch up with colleagues but there was no time for socialising after the meeting as I had to rush off to get to the doctor’s appointment. Bloody cancer!
I arrived at my appointment a couple of minutes late, thinking that wouldn’t be a problem as doctors are always running late. Not this one. Maybe because it was Friday afternoon. She took a few minutes to read my file as she didn’t know me or where I was up to with my treatment, and then called me in. I could tell almost immediately that she was different to my usual haematologist. She was female for a start. I told her about my two sclerosed or hardened veins and asked if I’d need a PICC line. She said if I was asking about one this early on, I was probably heading towards needing one. I told her I’d prefer not to have one and also told her that it was the last drug I was being given, dacarbazine, that seemed to cause the most irritation and pain when it was being infused, so I thought this was the problem drug. Dacarbazine is the fourth and last drug I am given and it is infused over 1.5 to 2 hours. I asked if it could be given even slower than that, not that I wanted to spend any longer in the chemo chair, but she didn’t think that would help as it wouldn’t change the fact that it was an irritant drug in contact with a small vein. I then asked whether it could be prepared in a bigger volume of fluid so it was more dilute when it was being infused. Perhaps that would cause less irritation. She agreed that might help and made a phone call to pharmacy to ask them to prepare the drug in almost twice the volume they would usually prepare it in. She asked if I had any problems with fluid retention after chemotherapy, which I didn’t, so it would be safe to give me a bigger volume of fluid without risking heart failure! I’m young and fit remember. Just hope that chemotherapy induced cardiomyopathy doesn’t kick in.
I asked her how my neutrophils were going as I’d had a blood test that morning. They were at an all time high of 1.5! 1.5 is actually still a bit low for a ‘normal’ person (ie. someone not having chemotherapy) but for me, it almost seemed excessive, three times what they’d been previously. Perhaps things were looking up. I later joked that maybe the chemotherapy wasn’t working anymore as it hadn’t knocked me around as much and my neutrophils weren’t being knocked around as much either.
She then looked at me with this knowing look in her eyes, I think it was sympathy, and asked how I was going. It wasn’t a simple “how are you?”, it was more “how are you really coping with the fact you’ve got cancer in your thirties with two young children and are having chemotherapy which makes you feel like shit, and you’ve still got 9 treatments ahead of you and you don’t even know if it’s working yet?” To be honest, I can’t even remember how I answered. I think I told her it was harder than I thought it would be but I was OK because the second and third rounds had not been horrendous like the first round. I told her the family were away at the moment so I had a lot of time to myself to relax and not worry about anyone else. I told her I’d even been out in the garden doing some weeding. She looked horrified. “You shouldn’t be in the garden with your neutrophils!” she said. I asked what was in the garden that was bad, thinking she might say some weird fungus or something but the answer was simple. “Dirt!” Yes, I suppose that makes complete sense. I just hadn’t really given it any thought. I could have a small cut on my hand, get a bit of dirt in it, and with no neutrophils to ward off any little bugs, I’m a sitting duck for septicaemia. “No more weeding for you!” she exclaimed.
She then told me about the ‘neutropaenic diet’ I should be following which is pretty much like the diet you are supposed to follow when you are pregnant. This was all news to me. She said that I probably hadn’t ben told all of this because I was a doctor and people assumed I knew. I am a doctor, but I’m a pathologist, not an oncologist, and my patients don’t have to worry too much about their diets.
We then had a quick chat about the upcoming PET scan which would be done about 10 days after the 4th hit of chemo. This would tell me if this chemotherapy was working or not. She told me to make an appointment to see her as soon as I got the appointment time for the PET scan, as my usual haematologist would still be away.
So, on Monday 9th September, I arrived for chemo number 4 (or day 15 of cycle 2 if you’re my doctor). Number 4 sounds much better. That’s one third of the way through chemo – once I got through the next two weeks that is, and provided the plans don’t change, which of course they could. I was seated next to my chemo buddy, Karine, again today. That day was her second last treatment. I was happy for her, and also very, very jealous. Soon enough (only 3 or 4 months later!) it would be my second last and then my last treatment. I cannot wait! The ladies next to me commented on my scarf and asked where I got it from so I was happy to be able to give them a pamphlet for Hat House and tell them how great the hats and scarves are there. I gave the rest of the pamphlets to the nurses so they could go on display with all the other information there and hoped that the next generation of chemotherapy patients would not have the same difficulties I did finding scarves.
The challenge. I mentioned in previous posts, and discussed with haematologist, the difficulties I have been having with my veins sclerosing after chemotherapy and the possibility that I may need a PICC line. I had already decided that if the vein sclerosed after this round of chemotherapy, I would get a PICC line. I’m not really strongly opposed to getting one. If I absolutely need one, I will get it. I just need to be satisfied the reason or reasons are good. It’s a bit like when I was pregnant and was searching for a reason to have a caesarean. The fact that ‘natural’ childbirth is ridiculously and unnecessarily painful wasn’t enough. No idea why not! I do not judge those that are too posh to push. I applaud them. My second labour was so intense and quick that there was not even time for drugs. That was not my birth plan. Actually, I didn’t have one. Anyway, I’m digressing. The PICC line. The reasons I don’t really want one are all relatively minor which is why I won’t really be shattered if I need one.
- It is a foreign body in my immunocompromised body so there is a risk of infection (probably low, but there), and having one in might sway my doctor to put me on bone pain causing Neulasta injections if my neutrophils remain low.
- I have a one year old child who likes to pull things, but it will probably be well covered and taped for that not to be an issue.
- Summer is around the corner so it will be constantly exposed for all to see. That one really is minor. I’m not that vain. I think it’s hard to be too vain when you’re bald.
- It will necessitate another weekly visit to hospital for flushing and a dressing change.
- I won’t be able to swim in my pool, as you have to keep it dry! Come to think of it, maybe neutropaenic people shouldn’t be swimming in pools anyway. Will have to ask my doctor that one.
A PICC line would however, save me at least 20 stabs over the coming months for intravenous access for chemotherapy and blood tests and would save my poor peripheral veins from further torture and constant pain when they sclerose. Some of you are probably wondering why I don’t just get one.
So when I arrived for chemo today the charge nurse mentioned the trouble I’d been having with my veins and we briefly discussed a PICC line. She asked if I was having 6 rounds of chemo. I wish! I told her it was 12 – still 9 to go! I told her I would get a PICC line if the vein that was used today sclerosed. I went through the ritual of soaking my hands in hot water to dilate my veins. When the nurse came over to insert the cannula she decided we wouldn’t waste our time with those small veins in my hand and wrist and would go for a big vein in my cubital fossa (front of my elbow). Big vein, bigger volume of fluid and therefore dilute chemotherapy, heat pack to dilate the vein, infusing over 2 hours instead of 1.5 hours. It had to work.
After the cannula was inserted the charge nurse came back and said “I think we’ll just book you in for a PICC line”. I was quite perplexed by that. I think she saw the cannula in my cubital fossa and assumed there were no veins lower down that were any good. I told her I would wait and see what happened after today and that I still had one good arm! The nurse who put the cannula in also reassured her that there was no problem. We just decided to go for a big vein. So, call me determined or call me stubborn. You can even call me stupid if you want. It is now my mission to avoid a PICC line. Chemotherapy number 4 went in with no problems. No pain during the infusion like there had been the previous two weeks and no pain when I returned home. We may just have found the successful formula.
I also received an appointment time that day for my PET scan. This is the one that will tell me how well the chemotherapy is working. Apparently, it should be negative! That’s what my usual haematologist had told me. Well that is the best case scenario. I am not expecting it to be negative but that doesn’t mean I am expecting it to still show signs of cancer. I’m just going in with an open mind knowing that it could show anything. I know the chemotherapy is working as the itch has gone and the lymph nodes in my neck are smaller. But how well is it working? Time will tell. My PET scan was booked for Thursday of the following week (19th September) at 9:15 am. After chemotherapy I went upstairs to make an appointment with the haematologist to get the results. I was informed that my haematologist would be back on 25th September so I could just wait and see him. Really? Wait six days for the result of the PET scan? I don’t think so. So I got an appointment for 2:15 pm on Thursday 19th September. Do you think I’ve learnt my lesson from the last PET scan and I won’t get the results directly from the radiologist? Probably not. But at least this time I’ll be seeing the haematologist the same day so if the radiologist gives me bad news again I’ll find out soon enough what it really means for me.