38. Reinforcement of my post PET perception

September 24th to October 6th, 2013

Well, the two weeks after chemo round 5 reinforced for me why I wasn’t excited following the PET scan results. I’m not saying they weren’t good results, they were very good (not good like the good cancer). They could have been a bit better, but they could also have been A LOT worse. I was very thankful and extremely relieved that my lymphoma had responded to the chemotherapy and if I had have been told I didn’t require any more chemotherapy then I would have been very, very excited. I just could not feel excited when I only had 4 rounds of chemotherapy behind me and twice that in front of me.

I’ve already written about the ‘Look good…..feel better’ workshop which I attended the day after round 5 of chemo. That afternoon, I gave myself an injection of the bone pain causing Neulasta. Also known as G-CSF, or Granulocyte Colony Stimulating Factor, this injection stimulates the bone marrow to make more neutrophils (also known as granulocytes). Because the bone marrow is working overtime to pump out these neutrophils, it expands and that can cause pain. The injection was a simple subcutaneous injection, like a diabetic person would inject themselves with insulin. No big deal.

Wednesday was spent in bed, pretty standard, and I slowly improved over Thursday and Friday. Saturday was AFL grand final day and I had a few people over to watch the game while I ignored them and the game, as I was working on this blog (I had just started writing it several days before).  I remember well that cousin Sonya had been very unwell with the flu that week. She was planning to come to my house to watch the grand final but thought she had better stay away from me if she was sick. She was probably more sensible than me, and I don’t think that has ever happened before, as I told her to come anyway because I didn’t want this cancer to be calling the shots! I told her one or both of us could wear a mask. She didn’t come and I’m sure she’s glad she didn’t, as it turns out.

On Sunday, there was a bit of a spontaneous working bee at my property, which had become slightly (understatement of the year) overgrown with weeds. My dad was there, my mum was there and the quiet sister, Joanne, was there too. There was also another person, who does not wish to be named. I have not known this person for very long, but when I gave him the nod to go ahead and sort things out, he literally went crazy, working in pouring rain and organising everything. Within two weeks an old car had been removed, an enormous skip bin had been filled with weeds and rubbish and the place was looking as good as it did when we moved in two and a half years ago. I am humbled by the generosity of a lot of people, and so very grateful for everything this person has done. I know he doesn’t expect thanks or any form of repayment but I’d give him a kidney if he needed one!

I did a bit of weeding on that Sunday, although I had been told not to play in dirt. What a rebel! I was starting to get a few aches and pains which I assumed was from the G-CSF (Neulasta) and then at around 5pm, I suddenly felt cold and a bit shaky. I thought I’d better check my temperature and it was 37.8°C.  When you’re having chemotherapy, you’re instructed to call the hospital if your temperature is above 38°C.  If you have a fever, it might be due to a bacterial infection which can be pretty serious if you don’t have neutrophils to fight it. The medical terminology is febrile neutropaenia or neutropaenic sepsis. Since I’d been persistently neutropaenic and was at an all time low of 0.3 before the last hit of chemo, I thought I’d ring the hospital to see what their advice was rather than wait until my temperature went over the magic 38°C, which I suspected might happen in the middle of the night.

I called and spoke to the nurses and gave them a very detailed history. They had to call a doctor and then call me back. I did wonder if it would be easier if I just spoke to the doctor myself. As it was a weekend, my haematologist had someone covering him and it turns out it was the doctor who wanted to delay my last chemotherapy! He told them I should go to hospital. Just what I felt like on a pleasant Sunday night. I spoke to Cousin Sonya and she was very relieved she hadn’t visited me that weekend as she most certainly would have blamed herself for me getting a temperature. I kept checking my temperature and it crept up to 38°C, so I thought the hospital visit was probably worthwhile. I had dinner at home and then Joanne drove me in to hospital. By the time we got there, the front entrance was closed and we had to go through the night entrance, which is the same entrance I used when I had a baby there about 18 months earlier. I was hoping this admission wouldn’t be as painful as that one! The thing I was actually most worried about was this episode leading to a delay in my next hit of chemo.

We made our way around to the oncology ward, walking past the Intensive Care Unit. I wondered if I would end up in there. Unlikely, but neutropaenic sepsis can be very serious so it was not out of the realms of possibility. We arrived at the oncology ward and I was escorted to my room, where eventually a set of obs were taken and I didn’t have a fever! Weird. Somewhat embarrassing. Some blood was taken from my PICC line, which at that point in time I was quite pleased about having. When the results came back I was informed that I wasn’t neutropaenic. I can’t remember what the exact number was but I think my neutrophil count was between 8 and 10. An all time high!

So that night I had the pleasure of ‘sleeping’ in a very uncomfortable bed with frequent obs failing to record anything even close to a fever. I felt like I had a fever; freezing cold one minute and dripping with sweat the next, but no fever was recorded. That was embarrassing. The covering doctor came to see me the next morning and decided to send me home on some oral antibiotics for a possible chest infection. I don’t think I had one and I didn’t take all the antibiotics anyway because I kept forgetting. Good old chemo brain!

On Thursday of the following week I had the pleasure of catching up with Lisey in the city. She was staying in an apartment there while undergoing radiotherapy. It was great to catch up face to face again, as we haven’t done that often. In fact, it was the first time we had seen each other as cancer patients. Lisey’s hair was slowly growing back and mine had thinned considerably and been shaved, but I wasn’t bald. So, we decided to have a scarf off……

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And a ‘somewhat bald head’ off …………

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We even compared scars………This is my scar, all 3 cm of it! It may be difficult to see because of the steady hand and that beautiful subcuticular stitch my awesome surgeon used.

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And these are Lisey’s scars……..

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If you scrolled down hoping to see mastectomy scars and nipples, what is wrong with you???? I know you did, Simone.

There are no photos of Lisey’s scars but I can inform you that I won the scar competition hands down! And I think we both rock a scarf and a balding head, particularly for two girls who have had long hair almost all their lives!

Things were plodding along just fine. It was school holidays, so on Friday, Jenni and I took our children to Gumbuya park for the day. We had planned to do that on Monday but my hospital admission ruined those plans.

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On Saturday, I woke up feeling OK but then all of a sudden I felt unwell. I was cold and shaky and just felt really drained. I had spoken to cousin Sonya earlier in the morning and then again when I wasn’t feeling well. Without me even saying anything to her, she said I didn’t sound well. I checked my temperature and it was 38°C. Determined not to look silly this time, I waited a couple of hours to see if my temperature continued to rise or settled. It stayed around 38°C, with the highest being 38.2°C. I decided I had better make the phone call.

I called the nurses who in turn called the doctor (the same one was covering again) and I was instructed to go into hospital. I had to wait for my mum to come over to look after the kids, and cousin Sonya to come over to drive me to hospital. So many people impacted by one little temperature. I definitely felt sick this time and with round 6 of chemo due in only 2 days, I was sure it would be delayed. So, off we went to hospital where we had to wait for quite some time for the room to be cleaned. Eventually I was taken to my room and eventually obs were taken. And again, I didn’t have a bloody fever! I couldn’t believe it. Now this really was getting embarrassing. This cancer was making me look stupid! I was beginning to wonder if those new temporal artery thermometers that they swipe over your forehead and neck were accurate. One of the nurses said she didn’t think they were so she checked my temperature with another one and there was one whole degree difference between the two thermometers. Blood tests were taken from my PICC line and from a peripheral vein, and again my neutrophil count was fine.

Cousin Sonya stayed for a while, working on that favourite cousin status I think, and Joanne even visited, staking her claim on the fav sis status. The conversations were interesting and we got the phlebotomist (the lady who did the blood test) to take a photo of us especially for this blog.

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I didn’t really need to stay in hospital but I think it was a case of ‘you’re here now, you might as well stay the night’. So, another sleepless night in an uncomfortable bed with frequent obs and no fever! On the upside, I was discharged on Sunday morning and there would be no delays to round 6 of chemotherapy (my neutrophils were definitely fine) so I was still on track to have all this chemo over and done with in 2013.

When I got home from hospital, I looked up the side effects of G-CSF (Neulasta). There are many, with bone pain being the most common. Fevers and chills was also listed as a recognised side effect, so I decided it was the darned G-CSF that was causing my problems and making me look like an idiot with these disappearing fevers.  At least it was having the desired effect on my neutrophils. I also spoke to Lisey about my symptoms and she introduced me to yet another cancer term. She thought it sounded like ‘chemopause’ – that’s menopause caused by chemotherapy. Given that I haven’t had a period for several months (and I am most certainly not pregnant) I am in a state of, possibly temporary, menopause. So these sweats and hot flushes could be menopause, but I’m going with a side effect of G-CSF.

After these two hospital admissions, I think my family decided I just couldn’t be left alone, so since then, my mum has virtually moved in. Whilst the hospital admissions turned out to be nothing serious, for me they were a little reminder that I had a pretty significant illness and just reinforced that, although the PET scan was good, there was no need to get too excited as it wasn’t going to be smooth sailing until the end…..whenever or whatever that end may be.

4 thoughts on “38. Reinforcement of my post PET perception

  1. Okay, that just stopped my heart for a second! My brain was reeling back through the times my mastectomy scars were anywhere near an iPhone. Lol. I really think the person who was opened up with a chainsaw should win the scar off. What do ya think? Scarf off, scar off. Classic Mel. Classic!

  2. Hi Melissa. Lol have had the same experience as u with temperatures
    And hospitals felt so stupid
    Sending u big hug lots lov
    Wondering if uve seen my posts
    Would lov to catch up
    Katie

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