42. Chemotherapy – round 9

A quick bit of housekeeping first. A few people have told me they think they’ve missed a few posts so I’ve now numbered them all to make it a bit easier to follow, as there have been quite a few.  This is number 42! Someone also asked me if I really thought I had the good cancer! Clearly they haven’t read the first post. If you’re reading this blog for the first time or you’ve joined some time down the track, the most recent post is at the top and you need to scroll all the way down to the bottom, a very long way, to start from the beginning, or click on a month under ‘blog post archives’ to see all the posts for that month, again in reverse order.

Monday 18th November to Sunday 1st December, 2013

Just when I thought things were getting a bit boring, there was a bit of excitement thrown in to round 9. The day started like any other chemo Monday; taking my daughter to school, staying for assembly and then returning home to meet Jenni for the drive into hospital.

I had my usual pre-chemo appointment with my haematologist and this one commenced with him saying “two thirds of the way there”. He was right. At that point I was two thirds of the way through treatment. People constantly tell me “another one down” on the Monday I have chemo, or on the Sunday before, and whilst it is technically correct if you’re referring to the chemo infusions, I don’t really cross it off as done until I’ve come through the other side of the effects of the chemo. That’s just the way I look at it.  The chemo infusion is the easy bit. The side effects are the hard part. Every time I’m bed bound feeling like crap after chemo, I say to myself “only three more times (or whatever the number may be) I have to do this”. I don’t get annoyed with the people who say “another one down” on the Monday. I just see it differently.

What I did get slightly annoyed about at this point in my adventure, was when people said “Wow, that’s gone quickly” when I told them I’d had eight rounds of chemo and had four to go.  Yes, time may have gone quickly for those who had not been hooked up to chemo every second Monday since the end of July and spent a good part of the next week in bed with no energy to do anything, and endured all the other pleasantries associated with cancer, but it most certainly had not gone quickly for me. I suspect it hadn’t gone quickly  for the fav sis, my mum or my daughter either.  As I said, I was only slightly annoyed as this comment elicited a look and a raised eyebrow from me which led those who said it to quickly reconsider their statement and understand that time probably hadn’t gone quickly for me.

I have digressed again.  Back to the appointment with the haematologist. It was at this appointment that I finally remembered to tell him about my skin. For months I’d had patches of dry skin and areas that I described as looking like pigmented stretch marks. I had a lot on my left shoulder and underarm area extending onto my breast and also some over my abdomen. They were not pretty, but in the grand scheme of things, I was not too bothered.  When you’ve got away with a 3 cm surgical scar, you can’t complain too much about other skin changes.  He told me these skin changes were very common and reassured me they would go when I finished chemo. Time will tell if he is right.

I also asked him a lot of questions about G-CSF (Neulasta – the injection to increase neutrophils) as I’d been told what I thought were some strange things by one of the nurses, like “G-CSF kills the chemo”. Logic and the ongoing side effects of chemo after the injection told me that one was not true.

He asked me about my mouth and if I had any ulcers. I didn’t but the fact he was asking made me wonder if I should be getting them now and if it was something I had to look forward to.

I mentioned an intermittent burning pain I’d developed in my hands since the last round of chemo. I knew this was a side effect of chemotherapy – peripheral neuropathy, but I didn’t know if it meant the culprit drug needed to be removed from my chemo cocktail.  The pain was intermittent and the motor function (the movement) of my hands was still OK so he wasn’t concerned. Then again, he doesn’t get concerned about much!

I also asked him if there was any chance I would need more than 12 rounds of chemo.  His answer was “probably not”.  That was not the definite answer I was looking for.  I suggested that he might want to hide under his desk if the time came that he needed to tell me I needed just a few more rounds of chemotherapy.  I think I asked that question because the end was in sight, and I wanted to be certain that it really was the end.

So, what was the excitement in round 9? After the appointment with my haematologist, I headed down to the hospital reception desk to sign myself in to hospital as I get admitted as a day patient for chemotherapy. I told the receptionist my name, although she probably knew it by now, and she looked through her very small pile of paperwork. The conversation then went something like this.

  • Receptionist: There’s nothing here for you. You’re not having chemotherapy today.
  • Me: Yes, I am.
  • Receptionist: No, there’s no paperwork here for you. The chemo ward is closed today for renovations. You’re not having chemotherapy today.
  • Me: Yes, I am.
  • Receptionist: There are a few patients having their chemo on the oncology ward today but they’ve already come in so you’re not one of them. You’re not having chemotherapy today.
  • Me: Yes, I am.
  • Receptionist: I’ll call the Director of Nursing.

I sat down in the waiting area and thought I’d check my appointment card so I could prove to the Director of Nursing that I was supposed to be having chemo today! I always have chemo on Mondays! If my chemo wasn’t delayed when I had neutrophils of 0.3, it sure as hell wasn’t going to be delayed by renovations!

So, what did my appointment card say? 19th November, tomorrow! Not 18th November which is what it should have said. WTF?! I remember the nurse handing the appointment card to me at my last chemo session and saying “your appointment is at 10:30”. No mention of the day. Was it a mistake that she’d booked me in for Tuesday? Surely, if I’d had 8 rounds of chemo on a Monday and round 9 was going to be on a Tuesday, you’d point that out, especially to someone with chemo brain! Oh well, I was there and I was going to get my chemo. I was beginning to feel like a drug addict again.

The Director of Nursing came and I was ready for a fight, but she was very pleasant. She was very apologetic and told me they’d made a mistake and I was booked in for Tuesday. I pretended to be surprised, but made it clear that I always had my chemo on Monday and I  was determined to have my chemo that day! She told me that she would see what she could do and she would have to check with pharmacy as one of my chemo drugs was made up on the day I had chemo and since I wasn’t booked in, it hadn’t been made up.  I knew that was actually true. The good old dacarbazine, the one that caused all my vein problems and led to me having a PICC line inserted, was made up on the day of infusion.

I waited for her return, wondering if she would actually come through with the goods and thinking about how annoyed I’d be to have chemo delayed by renovations when it is supposedly so important not to have any delays in the treatment of Hodgkin’s lymphoma. It would delay the post chemo fatigue and other symptoms, only by a day, but it would annoy me.

She came back about 10 minutes later and told me I could have chemo that day but that it wouldn’t be until the afternoon, at about 4 pm, because pharmacy had to make the drug up.  She said she had called in a nurse to give me the chemo and it would be given on the oncology ward. My own, private nurse. Wasn’t I getting special treatment? I was ‘happy’ with that, I just wanted to have that chemo over and done with and did not want to wait another day for it. It was a nice day that day so going home to enjoy a bit of sunshine before chemo was not such a bad thing. I suggested I have a blood test first so there wold be no further delays when I came back and I could be hooked up to chemo straight away, assuming those neutrophils were behaving. I went to the ward, had the blood test, and then headed home to enjoy some sunshine.

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Maybe I should be the author of this book.

When I got home, I sat outside by the pool (I couldn’t go in the pool because of my friend, the PICC line) in the sun. I ate some lunch, sent a few texts and emails, and basically just relaxed. I got a phone call just after 3 pm to tell my the drug was ready so I could head back in as soon as I could. My mum dropped me off at the hospital. No chemo buddy for me this time. Everything ran very smoothly. I had a private room with a private nurse. There was space. No trolleys banging into each other like in the chemo ward; hence the need for the renovation. This room had a bed rather than a gold class chair and what I did notice was that this bed was very comfortable, unlike the beds I’d had the pleasure of trying to sleep in during my previous three hospital admissions. This one had an air mattress and it was comfortable! I was hoping there wouldn’t be another hospital admission before the end of treatment but if there was I’d be requesting a bed with an air mattress!

My private nurse was lovely. She fully understood the flow on effects of a delay in chemo, even if only one day. The chemo infusion started at about 4 pm and was finished by about 7:30. I then had the dressing on my PICC line changed and Jenni picked me up at 8 pm, accompanied by my daughter, as she likes to visit me in hospital. She got to see the PICC line being dressed and she was very happy about that as she wanted to see what it actually looked like. Inquistive mind.

The aftermath of chemotherapy was fairly standard. I spent Tuesday, Wednesday and Thursday in bed with a complete lack of energy. The nausea was worse this time and I was popping those Zofran wafers. Fortunately they did the job and there was no vomiting. I also had a lot of muscle aches and pains this time too.  There was no bone pain from the G-CSF, just flu-like muscle aches and pains. I recall at one point telling someone that I felt like I’d been run over by a truck, but fortunately it only lasted a day or two.

By Friday, I dragged myself out of bed and caught up with a couple of high school friends I haven’t seen for many years. We have reacquainted ourselves thanks to good old Facebook! Sally, another high school friend who has had several mentions because she is such a good friend, came over on the Saturday to entertain my children and allow me to relax. Ev even popped in too.  I hadn’t written the ode to Ev at that stage so I think he was just making sure he got another mention.

The second week, the ‘good week’, was quite smooth.  I was supposed to go to a helpers morning tea at my daughter’s school on the Tuesday. I had RSVP’d and said I would go, had joked about it on Facebook, I think I might have even put the notice on the fridge.  Tuesday came and went and then on Thursday, I suddenly thought, “Oh shit, I forgot to go to the morning tea”. I have definitely got chemo brain!

Friday night was the pathologists Christmas dinner for my work. Luckily my colleague, Sarah, had organised this in my ‘good week’ so I could go. She even gave me a bed at her place so I didn’t have to drive home tired, from the city, and sent me on my way the following morning with a bag full of home cooked treats! On the  way into the city, I called in to Hat House to buy some more scarves. I had one favourite style and I only had one scarf in that style so I was getting a bit sick of it and I needed a bit of variety in the colours. It was a quick visit, unlike the first one, as I knew exactly what I wanted. I got another three scarves in my favourite style.

It was good to catch up with all my colleagues at dinner in a relaxed atmosphere. Only two people asked when I was coming back to work. They didn’t get a straight answer because I didn’t know.  It all depended on the results of the PET scan at the end of treatment, which I was assuming would be in mid-January. The topic of conversation for the night, conversation with me anyway, seemed to be hair loss. The men in particular seemed to be very intrigued about where hair loss due to chemotherapy occurred. Was it a dumb question? Probably not. I remember being told at university that there are no dumb questions. I was told that if you are wondering about something, chances are a lot of other people in the room are wondering the same thing.

So given that a lot of males at that dinner were wondering about hair loss, specifically whether pubic hair was affected, I assume a lot of people reading this blog are wondering the same thing. So, I will answer that burning question. Yes, you do lose pubic hair. The degree of hair loss is different with every chemotherapy regime and some people may lose more hair than others with the same regime.  I haven’t lost all the hair on my head, although it has thinned considerably. The same goes for my pubic hair. Ripped off! I can’t believe I am discussing my pubic hair in a blog!

I can’t end this post on that note so I will end with Uncle Max (also known as Uncle Fucker) and his efforts to raise money for ‘The Good Tittie Team’. Uncle Max had a garage sale at his home and raised over $600. He put up a sign with a photo of me, and explained that he was donating all the money from the garage sale to the weekend to end women’s cancers so that he can walk alongside me in March. Some people simply donated money to the cause without making a purchase at his garage sale. Nice one Uncle Max!

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Uncle Max’s sign. I can’t read it all either but you get the idea.

41. Chemotherapy – round 8…..ho hum

Monday 4th November to Sunday 17th November

It’s all getting a bit boring really. A bit of chemo, a few days in bed. Nothing particularly interesting happened this fortnight…or maybe it did and I just can’t remember it. The chemo brain is quite bad now.

Chemo number 8 took place on the day before Melbourne Cup Day. Like many people, my haematologist had a day off so there was no pre-chemo appointment with him and no hard questions to be asked.

Jenni had to work that day so Joanne stepped in as my chemo buddy. She is definitely putting in the hard yards for that favourite sister status. The results of my blood test took ages to come through so there was quite a delay before chemo actually started. My neutrophil count was fine thanks to the G-CSF injection so there was no need to consult with any doctors before hooking me up. Once it started, it was pleasantly eventful. I was informed that renovations would be commencing in the chemo ward in a couple of weeks and go through until just before xmas. The area was quite cramped so anything that would give the staff more room to move without trolleys crashing would be good. If they finished the renovations on time, I would have the pleasure of receiving my last chemotherapy infusion in the newly refurbished ward.

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My chemo buddy for the day. I’m getting quite good at these selfies.

I started feeling tired while I was having chemotherapy and I may have even had a little nap. When I got home, I pretty much went straight to bed and again spent the next three days in bed. The chemo definitely seemed to be hitting me harder in terms of the fatigue but I had been told to expect that.

Apart from exhaustion and the feeling that I really couldn’t be bothered doing anything (which is probably exhaustion), there were no other significant ill effects. I didn’t have bone pain from the G-CSF this time which was good. The nausea seemed to be lasting a bit longer each time so I was popping the anti-emetic tablets more frequently. There was no vomiting; that pleasure was bestowed upon my daughter this time.

She came into my bed on Tuesday night and said she had a sore tummy. Shortly after she said she was going to be sick so I ran to get a bucket, hoping she’d hold it in until I got back. She didn’t hold it in but she got out of bed and took herself to the bathroom and vomited in the sink. I was so proud of her! I really expected vomit all over the bed. Perhaps I should have taken her to the bathroom myself and not worried about the bucket, but as I said, the brain isn’t working too well now. My mum was there and offered to take my daughter in to bed with her so I didn’t get sick too. I wasn’t trying to be a hero but I figured that I was going to feel like crap the next day anyway and I needed my mum healthy to look after the 20 month old ball of energy. If she got sick, I’d have to call in more back up. So I took my chances.

The vomiting continued all night, pretty much on the hour. Nine times in total but who was counting? At 7am I did a quick google search on zofran wafers and found out it’s OK to give them to kids, so I popped one on her tongue and there was no further vomiting. Wish I’d thought of that earlier! Zofran is a strong anti-emetic (anti-vomit) drug commonly used to treat nausea and vomiting after chemotherapy. The beauty of the wafers is that they just dissolve on your tongue so they work quickly and are perfect for kids. I am also happy to report that with frequent hand washing and extreme care, I actually managed to avoid getting gastro myself. Very surprised but very relieved.

I came out of the exhausted phase by Friday, and by that I mean I made it from the bed to the couch. The ‘good’ week was spent madly blogging, fundraising and recruiting new members to ‘The Good Tittie Team’. Jenni and I had a meeting with our uniform supplier to discuss what options were available. It was a long but productive meeting. Girls discussing colours is never going to be quick.

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The team uniform meeting. Yes, another selfie!

Since there is not much else to talk about, I will give you a quick update on the current status of ‘The Good Tittie Team’. The team was formed 6 weeks ago and started with two members. We now have 29 members and have raised almost $32,000. Eight members have raised over $2000 and have therefore officially qualified to walk. That leaves 21 members who are yet to qualify and it’s definitely not too late to donate!

Our fundraising efforts saw us race up to third top fundraising team, but we have now slipped down to fifth. We have three members in the top 100 fundraisers too. I did get up to 8th at one point but have now slipped out of the top 10, to 11th.

Our newest recruit is Bonnie. She has now taken the title of the youngest member of our team and will only be eligible to walk (by age) a couple of weeks before the event. Bonnie is my niece and daughter of Amanda (also on the team and a breast cancer arse kicker). She was my flower girl, shares the same middle name as my daughter and is a real sweetheart – being born on Valentine’s Day, she doesn’t have much choice. She has already kicked off her fundraising efforts with a massive $500 donation! Welcome to the team Bonnie!

If you would like to donate to ‘The Good Tittie Team’, simply click here.  This will take you to our team page.  Simply scroll down to see the members of the team and click on whoever you would like to donate to, preferably somebody who hasn’t reached $2000 yet (or me).  When you are on the page for that person, click on the big green ‘DONATE ONLINE NOW’ button.  It’s that easy.  If you’d like to make it a bit more difficult, go to http://www.endcancer.org.au and then you can search for our team (The Good Tittie Team, in case you’ve forgotten) or search for an individual by name. Any person or organisation donating $500 or more will be rewarded with their name on our team T-shirts. We are the second biggest team in the walk so we will stand out. Pretty good advertising.

This is also a final shout out to anyone who would like to join ‘The Good Tittie Team’ for something that is going to be so much more than raising money for a good cause. It is going to be a huge reunion of family and friends showing their support for two girls who had a pretty shitty 2013. Above all, it will be fun.  We will be ordering uniforms very soon so we need to finalise team numbers. If you would like to join, click on that ‘here’ button above, scroll down and click on ‘Join Team’. Let me know if you’re joining and I’ll give you the password. Go on, do it!

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40. Chemotherapy – round 7……and an ode to Ev

Monday 21st October to Sunday 3rd November, 2013

I turned up to my routine pre-chemo appointment with my haematologist with a bit of attitude this time. I walked in, sat down in the chair and said “I need answers. I need to know what the future holds for me.” I left the last appointment with him a fortnight earlier really having no idea if he thought my PET scan results were good, or if he actually thought they were bad because I didn’t have bulky disease and the scan wasn’t negative.

I think he was a little surprised by my assertiveness. He turned and faced me and looked me in the eye. I asked him a lot of questions about whether he thought the PET scan at the end of treatment would be negative, what would happen if it wasn’t, what my chance of relapse was and what sort of treatment would be involved if I relapsed.

He said if the PET scan after 4 rounds of chemo had been completely negative he would be “super bolshy” (I think that means arrogantly confident or something like that) about the PET scan at the end being negative. Since that PET scan wasn’t negative, he said he was “bolshy” rather than “super bolshy” about a negative PET scan at the end. If the PET scan is not negative, I will probably have radiotherapy to any spots still showing activity, as long as they are not widespread.

If the PET scan at the end is negative, does that mean I am cured? He said he hoped so, but of course there are no guarantees.  I will continue to see him every three months initially to see how I’m travelling. I had asked him at one of the very first appointments about how we would know if I relapsed. I assumed I’d be having fairly regular PET scans but he told that wouldn’t be the case. Apparently they do that in America, but not here. Obviously it comes down to money. If I relapse with lymph nodes involved in my neck, armpits or groin, I can feel them, but if it’s in my chest or abdomen, I can’t feel those lymph nodes, so the lymphoma could just march along with me completely unaware….unless I get itchy again. I didn’t really go into it too much at this appointment, but diagnosing a relapse is definitely something I’ll go into in great detail if I am given the all clear after the next PET scan.

If I am given the all clear, there is about a 10% chance of relapse in the first two years. After two years, the risk of developing other cancers is actually higher than having a relapse of lymphoma. The risk of other cancers is higher than the general population because of the chemotherapy I have received! Good chemo for the good cancer. It might cure the lymphoma but then give you another cancer. Awesome! If I do relapse, the treatment is likely to be a stem cell transplant. He was a bit hesitant to go into too much detail or commit to what sort of treatment I would have, as any treatment for a relapse is likely to be performed in Melbourne under the care of a different doctor.

I left the appointment feeling a little clearer about his thoughts on my prognosis. He doesn’t have a crystal ball so I guess I couldn’t ask too much. It seemed to me that a negative PET scan at the end of treatment was the most likely outcome but the possibility of a relapse and how that might be detected was a concern.

I went downstairs to be hooked up to chemo and was back in the naughty corner again. Getting number 7 under my belt was a bit of a milestone as it would mark the first time I had less chemo ahead of me than behind me. The nurses informed me that my neutrophils were 0.6. I was neutropaenic again having not G-CSF after the previous round of chemo. I wasn’t even the slightest bit concerned that I wouldn’t be having chemotherapy that day but the nurses told me they’d have to run the results past my haematologist to make sure he was happy to proceed. I was OK with that. They were just following protocol.

Of course, my haematologist was happy to proceed but he also told the nurses that I would now be having G-CSF after every round of chemotherapy. I guess I had earned it now, being persistently neutropaenic. My lazy bone marrow hadn’t realised that it needed to work a bit harder so it would be getting some help. My chemotherapy infusion was otherwise very uneventful. Given my episode of vomiting after the last round, which I forgot to mention to the haematologist, I made sure I was sent home with some extra anti-emetic drugs.

The fortnight after chemotherapy was fairly uneventful too in terms of the effects on me. I spent Tuesday, Wednesday and Thursday in bed feeling completely drained, but there was no vomiting which was very fortunate. I hadn’t spent three days in bed after previous rounds of chemo. I had been told the tiredness would be cumulative and it felt like that was exactly the case.

It was in this fortnight that I started the dodgy hodgy chemo cuts reveal challenge and formed ‘The Good Team’, which was soon after re-named ‘The Good Tittie Team’. So it was quite fortunate there were no particularly nasty after effects as I was very busy fundraising and blogging.

I had to go back to the hospital on Monday 28th October for a routine flush and change of dressing on my PICC line. I was fortunate to have an earlier than usual appointment that day which meant I could get out in time to pick up my daughter and her friend from school and take them to gymnastics. This has always been left to the parents of my daughter’s friend, which they have been very happy to do and for which I am extremely grateful. They also usually take my daughter back to their place for tea and then deliver her home, fed and happy. Thank you Tash and Richard! The support from the school community really has been amazing. Although taking my daughter and her friend to gymnastics is really no great feat, it is important to me that I do simple things like that in the ‘good’ weeks as I know my daughter hates the ‘bad weeks’ when I spend a lot of time in bed and everyone else runs her around to school and other activities.

On that Monday, I developed quite severe bone pain, due to the good old G-CSF. It was a strange, throbbing pain around my hips and sacrum. It was constant but made much worse with any change in posture or position, like moving from standing to sitting or vice versa. I also had a band of throbbing pain around my chest when I moved. It was quite a bizarre kind of pain but fortunately it settled considerably after that day. I didn’t take anything for it. As I later told a nurse, I just sucked it up.

This fortnight was also the first time I was asked what once would have been a very confronting question by a complete stranger. I was in Adairs, doing a spot of Christmas shopping (taking advantage of the good week and getting organised early) when a man who looked like he was in his 70’s came up to me and said “Excuse me, have you got cancer?” I thought it was really quite odd to ask that question to a stranger and I did wonder about the state of his frontal lobe (for the non-doctors reading, people with frontal lobe problems are disinhibited and often socially inappropriate) but I wasn’t upset or offended. I actually thought it was pretty funny that he’d just blurted it out so I smiled and said, “yes, I have cancer”. He then told me that his wife had died of cancer about a year ago. I think my behaviour then was even more inappropriate than his! As I was in full-on fundraising mode, I thought “Hmmmm, I could get a donation out of this”. I asked him what sort of cancer his wife had and he said “ovarian”. Bingo! A women’s cancer. So, I told him about the walk to end women’s cancers that I had signed up for but he just said “Oh, good luck with everything” and walked off.

I mentioned in the previous post that my hair loss had not been quite as advanced as I had expected it to be. I think every chemotherapy regime is different and every person is different in their response to it. My hair had thinned considerably, so there was no question it had to be shaved off,  but I had very thick hair to start with so I was far from completely bald. The hair that was there was even starting to grow so I really was starting to look quite a sight with very thin hair exposing much of my scalp. I thought I was looking like a balding old man. In fact, I thought this hair style was quite similar to that of my good friend Ev! I promised Ev that if he joined ‘The Good Tittie Team’ or made a sizeable donation, I would dedicate a blog post to him. Everyone loves a blog mention! Unfortunately he couldn’t join the team due to work commitments (whatever!) but he did make very generous donations to both Lisey and myself. So Ev, this is your time to shine……sort of, because it won’t all be nice.

I’ve already mentioned Ev a few times throughout this blog. He is a high school friend and one of the very few high school friends I have kept in contact with in the now 21 years since we finished. Ev was a cycling fanatic in high school; he still is but age has slowed him down a bit. He used to call cycling hammering, so I bought him a hammer, and got it engraved, for his 21st birthday. I wonder if he still has it. As we got older and our lives got busier, the face to face catch ups became less frequent but there were still fairly regular phone calls and text messages between us.

After I was diagnosed with cancer, Ev stepped it up and really has been a tremendous friend and support to me. When you’re diagnosed with cancer, you really find out who your true friends are and Ev is definitely one of them. There have been many text messages and phone calls, a good percentage of which haven’t been responded to but he hasn’t given up on me! He has visited me several times, once straight after finishing night shift and he even brought dinner! He did confess however, that his beautiful wife prepared that meal, not him. That visit was the day before my PET scan so that Shepherd’s Pie became the celebratory meal when the results were good. We went out for brunch that day and I remember the day well as I talked like a woman possessed and I don’t think poor Ev got a word in, but he sat patiently and listened.

Sadly Ev’s father passed away very recently. Fortunately for me, the funeral was in my good week, so I was able to attend. There were at least seven people, and a few partners, from high school at that funeral, which I think says a lot about Ev. I told him that to have that many high school friends there, so long after finishing high school, really is testament to the great guy that he is. I’d say Ev’s wife is lucky to have him but I actually think he’s luckier to have her!

Sorry Ev, but it can’t all be nice. With any glowing reference there needs to be a bit of a slap in the face too. When I told Ev I thought my current hairstyle was resembling his, I asked him to send me a photo of himself so I could put it next to mine on this blog. To my great surprise, he did send me the requested photos with the accompanying text “Very uncomfortable doing this. It’s just for u and that fucker cancer”. I was also very surprised to learn that these were not Ev’s first ever selfies. So here is Ev and myself sporting our very similar hairstyles.

The front on view……..

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And the more telling, top of the head view……..

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Fairly similar I think (although Ev carries it off much better), so I have dubbed that hairstyle of mine ‘The Ev’ as a tribute to my good friend. After taking that photo, I shaved all my hair off again as it really was looking very average. Quite vain of me!

So that was the end of the fortnight after chemo round 7. Seven down, five to go wasn’t sounding too bad.

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39. Chemotherapy – round 6……the half way mark

Monday October 6th, 2013

I’d only been discharged from hospital the day before and I was back there again for another hit of chemotherapy. I hadn’t seen my haematologist since 26th August as he’d been on holidays. I was looking forward to seeing him so I could ask him what his opinion of the PET scan result was. I was fairly certain it wouldn’t be as overwhelmingly positive as his sympathetic female colleague. Jenni came into the appointment with me. She likes to sit in on them when she can as she finds my haematologist’s lack of sympathy quite entertaining.

I filled him in on what had happened over the last month or so, including the insertion of a PICC line and the recent hospital admissions. I told him I was feeling stupid turning up to hospital and not having a fever and asked him if I should bother coming to hospital if it happened again. His advice was to take some panadol and see if the temperature settled. Quite funny really, as my standard advice when people complain to me about any sort of illness is “take a couple of panadol and have a lie down.” I told him I had really felt quite unwell when I was admitted the second time and that I was surprised I didn’t have a fever in hospital. He said there was nothing sinister on my blood tests.

I then told him about the night sweats and I’m pretty sure that made his ears prick.  Hmmm, could that be B symptoms? (In case you’ve forgotten, B symptoms are fevers, night sweats and weight loss in people with lymphoma, and are associated with a slightly worse prognosis). Surely not so soon after a nearly negative PET scan, and I didn’t have B symptoms when I was diagnosed. It was enough for him to get me on the bed and examine me. He felt my neck and abdomen and listened to my chest and reported that everything looked pretty good to him. That was comforting.

I asked him if he’d seen the results of the PET scan and he said he had. I asked him if he thought the results were good and he said “they’re OK”. I then said “you said you expected it to be negative and it wasn’t. What does that mean?” His response was “it’s not worth splitting hairs at this stage”. That was not so comforting. I didn’t really know what he meant by that but for some reason I couldn’t be bothered going in to it.

I asked him if I would be having G-CSF after this round of chemotherapy and he said “No”. I asked him why not, not that I wanted it, I was just interested in his reasoning. He said there was no point stirring up the bone marrow. I wasn’t really sure what the meant but figured I just had to be severely neutropaenic to ‘earn’ the G-CSF, and since I’d had it after the 5th round of chemo, I wasn’t neutropaenic going into this 6th round.

I also asked him if I was actually going to lose all my hair. I was now over 2 months into chemo and although my hair had thinned considerably, I was far from bald, and some of my hair was actually growing. I took my scarf off and showed him how much hair I had. He asked if he’d told me I’d lose my hair and I reminded him that he definitely had. It was pretty much the only side effect of chemotherapy he had been certain about. No mention of nausea or extreme fatigue.  Oh, he did also mention the cessation of periods. He conceded that I probably wouldn’t lose all of my hair.

I wasn’t annoyed that I’d shaved my hair, because I had to do that with the amount that was falling out. As strange as it might sound, I was actually a bit disappointed that I wasn’t going to go completely bald. It’s not something many get the opportunity to experience, not that everyone would want to, but if you’re going to lose most of your hair, you might as well lose it all! Also, a lot of people who have lost their hair due to chemotherapy find that it grows back completely differently, like my sister-in-law, whose hair grew back completely straight (I was going to say dead straight but that could be inappropriate). So, I was interested to see how my hair would grow back and I didn’t know if the fact that it hadn’t completely fallen out meant it would just grow back the same. I was hoping for completely straight regrowth but actually thought I might just get another twist of the knife with it growing back grey.

After the appointment with the haematologist, I headed downstairs for chemo number 6. The half way mark. Quite a milestone. Although I didn’t really feel that I would be half way until I got through the effects of chemo, it certainly was a good feeling to be able to start counting down the remaining sessions. I didn’t feel I could do that when I had more ahead of me than behind me.

There was nothing particularly remarkable about session number 6, which is good. No threats of delayed chemo, most importantly. Karine wasn’t there as she’d had her last session a fortnight earlier, and Jenni and I didn’t find a new friend that day.

The after effects of round 6 were fairly kind initially. Wednesday was the worst day, as it usually is, but as far as Wednesday’s go it was pretty good. I dragged myself out of bed before 5 pm and even managed to take my daughter to and from her singing/dancing/acting class, something I usually leave to my mum. I had  lovely dinner, cooked by somebody else and went to bed early looking forward to a good nights sleep and the possibility of feeling relatively normal the next day. Unfortunately, that was not to be. I woke up at 4 am and started vomiting! Now I know that nausea and vomiting are pretty standard side effects of chemotherapy, but this hadn’t happened with the previous five sessions, so why was it happening now? Just when it looked like I was going to get off lightly with the after effects!

I didn’t know if the vomiting was due to the chemotherapy or I had just been ‘lucky’ and had a bout of gastro. It didn’t matter really. What I was hoping would be a good Thursday was a day spent in bed feeling completely and utterly drained. Nausea and vomiting is not pleasant at the best of times, but I think when you’ve had chemotherapy and you have virtually no reserve, it hits you even harder.

I think the fortnight after chemo number six was one of the hardest. Perhaps it was cancer’s way of saying “don’t be too excited about being half way through your treatment!”  I was completely physically and emotionally exhausted and my catchphrase became “drained is the new normal”. I was feeling guilty about not being able to do things with my 6 year old daughter and because I felt crap, I had no patience and felt like I was constantly yelling at her and telling her off. I felt like she was suffering too and that was not fair. Although having a 20 month old son is bloody hard work when you’re going through chemotherapy (and even when you’re not), the blessing is that they are (hopefully) too young to remember anything. I do feel guilty about neglecting him too, and I’m sure he thinks my mum is him mum at the moment, but he is happy and I’ll make up lost ground in 2014.

Sally (high school friend, member of ‘The Good Tittie Team’) came over on the Saturday to entertain my children, to give both my mum and I a break. The girl is a star and I can not thank her enough! She cleaned up the playroom, brought dinner and entertained a very busy, young boy. By the time she left in the afternoon, I thought I was starting to feel better but then I performed the rather simple tasks of feeding and bathing my son, and I was exhausted. It really was quite frustrating. Cousin Sonya came for a sleep over that night, to catch up and to let me sleep in on Sunday. My darling cousin has been so supportive during this adventure.

I also discovered a new talent in this fortnight. That of making people cry. Well, it’s actually not a new talent if I think about it. From what I have heard, there have been a few tears shed by people reading this blog but I think that was mostly at the start so perhaps I was rediscovering this talent. I took my daughter to swimming on Saturday morning, and a good and honest friend told me I looked like crap. I told her about what had been happening and my physical and emotional exhaustion and I started crying. Then she started crying. On Sunday something else set me off and there were tears again. Sonya also started crying and then Jenni, who had popped in for a cup of tea, started crying too. The three of us were standing in the kitchen crying, so then I started laughing and wanted to take a photo of us all crying.

At the end of an exhausting fortnight, I was feeling like I needed to book some sort of holiday (local of course, because I wasn’t allowed to go overseas). I needed something to look forward to. The problem was, this cancer and the effects of treatment were so unpredictable. I could book something and may not be able to go because I might be in hospital with a non-existent fever, or I could just be so drained that it when it came time to go, I couldn’t be bothered. There just didn’t seem much point.

The fortnight ended on a nice note with my daughter writing a short but beautiful message for me. I felt I’d been so short tempered with her and was neglecting her, but I guess it just proves that a mother’s and daughter’s love is unconditional. Six down, six to go!

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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.