15. Chemotherapy – round 2

Monday 12th August

For a while there, I didn’t think I’d make it to round 2, but I did.  I was greeted by the nurse who I’d seen when I was admitted the week before and I explained to her that it seems it was a reaction to maxolon.  I was escorted to my chair in the naughty corner and was disappointed to see that I had been separated from Karine, my newfound chemo buddy who I’d met a fortnight ago.  Did we talk too much?  We vowed we’d make sure we were next to each other next time.  She only had three more sessions after this one.  I still had 10 (all going to plan).  If I sound jealous it’s because I was!

A nurse put an intravenous cannula in (got it in first time) and took some blood to be sent to pathology.  I then went upstairs to see my haematologist.  It was a pretty quick appointment, which commenced with me saying, “I’m becoming a bit of a handful aren’t I?”  I can’t even remember what his response was but I don’t think he agreed.  Very polite.  He asked if my itch had gone.  I said it was better but not gone.  I told him I was pretty sure the lymph nodes in my neck were smaller.  He felt them but didn’t say anything.  Would he even remember what they felt like three weeks ago?  I asked a few questions to clarify things some of the nurses had told me.  Can this chemo regime be given every three weeks?  One of the nurses told me it could but that I was probably getting it fortnightly because I’m young and fit.  I didn’t think that was right.  He confirmed that saying she had obviously got her regimes mixed up.  Am I supposed to have antibiotics for viral respiratory tract infections?  One of the nurses told me I need to have antibiotics straight away to prevent a secondary bacterial infection.  That one really didn’t make sense to me.  Having antibiotics for a viral infection pretty much ensures any secondary bacterial infection will be resistant to those antibiotics, which cannot be good in someone with a weakened immune system.  He told me we didn’t need to be silly but needed to treat any bacterial infection early.

He asked if I’d had a blood test that morning.  I said I had and asked if he had the results.  He didn’t have the results and he said something along the lines of that not being an issue because I was having chemotherapy regardless of what the blood tests showed because I was well.  The most important blood test was that which measured my white cell count, in particular my neutrophil count.  Neutrophils are one of several types of white blood cells in our body that fight infection, particularly bacterial infections.  Normal counts are between 2-8.  The nurses had told me they don’t give chemotherapy if the count is less than 1.5.

I went back downstairs for chemotherapy and soon after someone slipped a piece of paper into the basket on the trolley next to me and said “Here are Melissa’s pathology results”.  Of course, I had a look at them. Doctors always look at their own test results. Neutrophils 0.5!  That is low.  I let out a chuckle and said to Jenni, “Ooh, the nurses are not going to like that!”  I told the nurse next to me and she asked if my doctor knew.  I said he didn’t but that I knew he wouldn’t care and he’d say I’m having chemotherapy anyway.  She asked another nurse to give him a call and as expected he wanted to push on with chemotherapy.

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This is what neutrophils look like.

My haematologist popped down a bit later to discuss my neutrophils, which in his words were “a little low”.  “A little low?” I asked.  “Almost non-existent”.   He didn’t think so.  I think zero would be considered low in his books.  He explained that sometimes the first chemo is a bit of a shock to the bone marrow and then it realizes it has to work a bit harder but if my neutrophils were still low before the next chemo, I’d need nuelasta (or G-CSF, granulocyte colony stimulating factor).  This is an injection that stimulates the bone marrow to produce more white blood cells.  I was also informed that in young people (that’s me!) it can cause pretty bad bone pain.  The good news just keeps on coming!  Go you good cancer!

The rest of the chemo session was pretty uneventful.  The nurses snuck through the first three drugs without me realizing and the fourth one was up before I knew it.  That one is infused over 1.5-2 hours.  It had to be slowed down initially as it was stinging but they sped it up again and I was out before afternoon tea.  I had a lovely nurse looking after me for most of the day.  She usually works on the ward but was helping out in the day infusion centre that day.  She was also the nurse Jenni had spoken to when I had my ‘bad day’. She said I needed to book something like a girls weekend in the near future so I had something to look forward to.  Sounds like a bloody good idea to me!

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OK, those quotes are a bit too deep for me so I won’t finish on that note.  I’ll tell you about Bali.  I mentioned in an earlier post that we had a family holiday booked at the beginning of September. My haematologist advised me not to go. Initially I thought I’d still be going, maybe for a week instead of two.  I thought if I got sick over there, I’d just hop on a plane and come home.  When I was sick after the first round of chemo, it occurred to me that if I was sick, I would actually be sick and possibly not capable of just going to the airport and jumping on a plane.  So, at that point, Bali was off for me. But then I recovered and felt pretty good, almost normal, in Queensland, so I was going to Bali again.  After turning up for round 2 of chemo and finding out how low my neutrophils were, common sense prevailed and I decided it really wasn’t worth taking the risk of getting sick over there.  With virtually no immune system, the risk was high. My husband was still keen to go with the kids and I started thinking that two weeks at home with no husband and no children sounded like a bit of a holiday too.  Oh, apart from a little bit of chemotherapy.

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14. I should be so lucky

Oh wait, that’s Kylie.  I’m Delta.  I had an ultrasound of my thyroid gland on Wednesday 7th August.  Just another test to throw into the mix.  A bit more pathology in my body because lymphoma isn’t enough.  The PET scan I had for staging of the lymphoma also showed some activity in the right lobe of my thyroid gland.  Something had been noted on the initial CT scan I had and this had been described as “a low attenuation area, likely a simple cyst”.  I know because I have a copy of the report.  The size wasn’t mentioned in that report.  The fact that this area showed activity on the PET scan meant that it needed further investigation.  It was not a simple cyst as that would be PET negative.  So what is it?  Is it benign (non-cancerous) or could I be so lucky to have another cancer in my body?  That was obviously the concern and the reason further investigation had been recommended. Ultrasound is the best modality for looking at the thyroid gland.

Just in case you're wondering where your thyroid gland is.

Just in case you’re wondering where your thyroid gland is.

I arrived at the imaging place for my 10:30 am appointment and waited half an hour to be seen (yes, even doctors have to wait.  I know, nothing compared to the public health system!)  While I was waiting, I got a text from my sister, “Thyroid ultrasound? Please explain!”   Before I left home, I casually mentioned to my mum that I was just heading out for a thyroid ultrasound.  Her jaw dropped and she had a look of horror on her face.  As soon as I left, she texted my sister to ask if she knew about the ultrasound.  She didn’t and was concerned. My sister and I exchanged a few text messages in which I explained the reason for the ultrasound and the possibility that I could be really lucky and have two good cancers to which she responded “Are you f%$#*g serious?”   I then explained that most thyroid lesions are benign but if it is cancer then it is unlikely to have spread so I would just need it removed, and if it was cancer then I really was lucky I got lymphoma otherwise the thyroid cancer would probably never have become apparent until it had spread. Talk about tension, worry and concern! I should have just told my mum I was going shopping!

The sonographer called me and I told her recognised her.  We had a brief discussion and worked out she had probably done one of my obstetric ultrasounds a couple of years earlier.  She had obviously done her research on my recent scans as she said “things have gone a bit crazy since I last saw you”.  She asked if I had started treatment and I told her I’d had my first chemotherapy and told her a bit about the horrible week following and my probable reaction to maxolon.  She told me she had also been through chemotherapy several years earlier (I didn’t ask which cancer she had but now I wish I had; I’ve got the cancer card so it probably wouldn’t have been intrusive) and she also couldn’t take maxolon while she was having chemotherapy.  She’d taken it prior to having chemotherapy with no problems.  That is a bit of an aside, but I thought it was very interesting.  So, she performed the ultrasound of my thyroid gland.  I could hear her clicking away, obviously measuring things, but it’s not like an obstetric ultrasound where they show you the screen and tell you what they are doing.  This one is all very secretive.

When she finished, I asked her how big the lesion in the right lobe was now.  There was no eye contact.  “About 3 cm” she said.  Hmmm, that’s significantly bigger than the 0.6 cm cystic nodule described in 2008, but it had been 5 years and even benign lesions grow.  It was the lack of eye contact.  I was pretty sure she thought it was cancer.  She wouldn’t be the one reporting the ultrasound, that is done by a radiologist, but sonographers usually have a pretty good idea.  So then I thought it was cancer.   I doubted the ultrasound would be conclusive one way or another and I thought they would be recommending further investigation – getting some cells or tissue to look at (pathology!).

The thoughts going through my head right then were that cancer would be annoying because that would mean an operation.   They’d probably want to do an FNA first (FNA is fine needle aspiration which involves sticking a needle in the lump, sucking out some cells and then looking at them under a microscope – cytology). I didn’t like cytology when I was doing my pathology training.  Not many pathology trainees do.   I didn’t want an FNA; results are often inconclusive and you’d most likely have to go on the have the lesion removed anyway.  I’d be opting to go straight for surgery.  Could I have an operation while having chemo?  I would assume not because healing wouldn’t be that great.  I doubt they’d stop my chemo for the surgery because it’s more important to get on with treating the lymphoma.  So once I finished chemo, I would then have another operation to look forward to.  I’d have to get in touch with Christian again to find out who the best thyroid surgeon is.  Are all the enlarged lymph nodes in my neck lymphoma or have some of them got metastatic thyroid cancer in them?  Have I really got two cancers?  What the hell is going on in my body?  If I survived this lymphoma and I did have thyroid cancer, I’d spend the rest of my life waiting for the next cancer to pop up.  I thought I’d arrange to get my uterus and one remaining ovary removed to eliminate to possibility of getting cancer there (I’ve already had one ovary removed for a benign tumour).  Despite all these thoughts crossing my mind, I remained calm.  Thyroid cancer doesn’t spread early, and has an excellent prognosis if it hasn’t spread (better than Hodgkin’s in fact and no chemotherapy required – you might even be allowed to call it a good cancer!) so I wasn’t worried about that.  It was just the thought of having not one, but two cancers at 38 years of age.  That is crazy and almost certainly genetic and I have passed my genes on to my two children.  What sort of cancers are they going to get?  There go the wild thoughts again.

After the ultrasound, I returned home, picked up my daughter from school and headed to the airport with the rest of the family to attend a conference in sunny Queensland.  This had been booked several months ago and it was looking like I’d be giving it a miss after the week of chemo round 1, but I came good just in time to go.  The timing could not have been better.  Leaving a miserable Melbourne winter after an awful week to go to sunny Queensland was probably just what I needed.  I should probably do it after every chemo!

I called my GP the next day to get the results of the ultrasound.  I controlled myself and didn’t go straight to my radiologist colleague this time, given the bad experience I had with the PET scan results.  It was my GP’s day off so the nurse said she would show the results to another doctor and call me if there was anything to worry about.  The call came at 4:55 pm, when I was in a lift with no phone reception of course.   I called back and the nurse told me she had shown the results to another doctor and he said to tell me there were nodules in the right lobe but no sinister features.  “Is that what you were expecting?” she asked.  Well, no, in fact it wasn’t.  I was expecting cancer but I told her I didn’t know what I was expecting.

Do you think I was content with that opinion?  No way!  The next day I texted my radiologist colleague and asked him to have a quick look at my scan, at his leisure, and let me know what he thought.  The response came back within minutes.  “You have several lesions – solid and cystic in right lobe of thyroid.  Not avid on PET.  Likely to be benign.  We would suggest surveillance with ultrasound ie. 3 months but a biopsy is not a big deal if you are really worried.  I am not.”  There are not many people who have access to second opinions within minutes via text message.  I am fortunate in that respect.  And I’m not worried.  I probably won’t even have another ultrasound in 3 months.  I’ll leave that until after I’ve dealt with this lymphoma.  I have to say though, a thyroid biopsy probably isn’t a big deal for a radiologist who has probably performed hundreds of them, and it probably isn’t a big deal compared to a bone marrow biopsy, but it is still something I’d rather not have done on myself without very good reason because having a needle stuck in my neck would not be pleasant.

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A thyroid biopsy. Not my idea of fun! So why is she smiling?

So there you go.  It seems I have only one cancer.  How funny are all those irrational thoughts now?  Lisey introduced me to the term ‘cancerchondriac’ and I think my thoughts may have just been an example of that. Oh, and I wonder if the sonographer did actually think it was cancer but she got it wrong.

13. Depression 101

On Sunday 4th August, I had a short course in depression.  This was the one really bad day I referred to in my first post.  After coming home from hospital the day before, still exhausted from lack of sleep and being physically unwell, I went to bed and had a couple of hours sleep.  Apart from tiredness, I felt better than I had for the past few days so I was pretty confident I was over the worst of it. I went to bed early on Saturday night, hoping to wake feeling normal at last.

We have an intercom in our bedroom which we have set up so we can hear our son from his bedroom. I woke to him crying at about 7 am.  Physically, I felt pretty good, at long last, but I just didn’t want to get up to him, and I didn’t know why.  I had hardly seen him all week because I’d spent so much time in bed and now that I was feeling better, I still didn’t want to get up to him.  My husband got up, gave him a bottle and breakfast and then took him for a drive so I could sleep in longer.  I stayed in bed with our daughter.  I think she had slept in our bed that night.

My sister, Jenni, had offered to dry and straighten my hair in an effort to earn the title of favourite, and because, having hair similar to mine, she knows what an effort it can be.  I thought that was a very generous offer. We have come a long way since she told me she hoped my plane crashed when I went overseas in 1997! (For the record, she took it back before I left). I actually managed to wash, dry and straighten my hair.  I probably should have stayed up then but I got back into bed with my daughter, as she wanted a cuddle, and I started thinking.

I started thinking about the week and just how hard it had been.  It was so much harder than I had expected it to be.  I had been so sick that I really just focussed on how awful I felt and wasn’t thinking about anything else.  Now that I was feeling physically better, I was able to think about the impact of this cancer. I knew from the start it wasn’t going to be “all about me” (even though I joked that it was).  I hated the impact it was having on my family; being so reliant on them because I couldn’t look after my kids, having them see me so sick, having my daughter see me spend days in bed and not being able to take her to school or pick her up, neglecting my son.  The emotional side really hit me hard.

I knew it was normal and completely OK to have a bad day like this, but then I started worrying that it wouldn’t just be one day.  Maybe that was how I was going to feel for the next six months. Maybe I would not be able to do anything for my children, or worse, I wouldn’t want to.  It was awful.  I think I almost became catatonic.

I texted my husband to tell him I was having  bad day.  Jenni also texted to see how I was. I wasn’t keeping anything a secret.  I told her I was physically good but emotionally fucked.  She said she thought that would happen and offered to come over but I told her I just needed a day of self pity and didn’t want to see anyone. Lisey had posted her Kylie and Delta post the night before, which I had read and thought was beautifully written, as did everyone who read it.  Jenni shared it on Facebook and told me her account was going mad with responses.  She asked if I wanted to read the responses and I said it might be a good day to read them given I was already fucked up.  She sent them through and I think all of them made me cry. They probably would have made me cry even if I was having a good day.  The support was quite overwhelming.

Meanwhile, Adam had called to tell me he’d been fined for driving an unregistered car.  $700!  He had taken my car that morning and was pulled over and told the car wasn’t registered.  WTF??!! I had been leasing my car and the registration and insurance were due in late July.  I usually paid them myself and got reimbursed by the lease company.  For some reason, this year I passed on the invoices to the lease company so they could pay the suppliers directly. I did this in early July.  I received an email on Friday 5th July to let me know the payment had been processed.  I didn’t read that email properly.  On Monday 8th July, I went to see my GP and this whole Hodgkin’s adventure began.  I didn’t give my car registration or insurance another thought.  When Adam called me to say he’d been fined, I went back and checked my emails.  The lease company had only payed the insurance and not the registration!  Gotta love the timing.

My husband came home and suggested that I get out of bed and out of the house but I couldn’t be convinced to move.  It clearly wasn’t good to have the kids see me so miserable so he took them out for lunch.  That gave me uninterrupted time to think about the awful week I’d had, the effect on everyone around me and to worry that I wasn’t just having one bad day.  If I was due to have chemotherapy that day, there is absolutely no way I would have gone. I thought I needed ’emergency psychology’ to get me out of the situation I was in. I considered calling upon my resources yet again; a psychologist or a psychiatrist I knew, but in the end I sent a text to Jenni at about 3 pm, telling her that I needed her to come over.  She arrived within about 5 or 10 minutes.  Little did I know at the time, she was on her way to a friend’s place with her family. She turned around immediately when she received my text. Bloody cancer impacting my family yet again!

Jenni came into my bedroom and I told her everything I’ve just talked about above.  She was close to tears herself. My husband arrived back home soon after and this time he wasn’t taking no for an answer.  He forced me to get out of bed. I remember my legs feeling like lead.  They were so heavy. I went out for a hot chocolate with Jenni. I can’t remember what we talked about but I don’t think it was me or cancer. It was definitely the right thing to do, getting out of the house. It stopped me just lying there thinking and worrying.  I felt a lot better when I got home.

Jenni called the chemo ward at hospital to ask their advice as we thought it was definitely time for me to see a psychologist.  Third phone call to the chemo ward for the week – not a good start! The nurse she spoke to was very nice, and told her what was happening was completely normal, happens to everyone and doctors are the worst! The nurse called my haematologist who gave her the number of a counsellor and suggested I call her the next day.

Lisey texted that evening just to see how I was going and I filled her in.  She was full of good advice, yet again, having probably been where I was herself.  She told me I would plummet quickly and recover quickly; it’s the nature of the beast. And of course she was right.

On Monday morning, my husband went in to work late so he could get our daughter off to school.  It would seem I couldn’t be trusted!  I felt a lot better that morning, not normal, but a huge improvement on the day before.  My husband and I both went to school assembly and at 9 am on the dot, Jenni rang and made an appointment for me with the counsellor at 10 am.  My husband went off to work, my mum came over to look after the one year old and my sister took me to the hospital to see the counsellor.  One person out of action and three people affected!

The counsellor was nice but there were two questions she asked which made me think she wasn’t the one for me.  She asked me if I had any spiritual beliefs I could turn to, to help me through this time – no. She also asked if I had faith in my body’s ability to heal itself.  I raised an eyebrow and asked “this body that is trying to kill me at the moment?” I do not mean to criticise her at all as seeing her definitely helped.  I felt much better having just talked and gotten things off my chest.  I knew that the next major hurdle was to get through the next round of chemotherapy, with no maxolon, and if the aftermath wasn’t a repeat of the first round, I would be OK.

By Monday afternoon, I had, as Lisey predicted, bounced back quickly.  If I had to have chemotherapy that day I could have faced it, unlike the previous day.  I saw my GP later in the week to get a referral to see a psychologist.

(Almost two months on now, I still haven’t made the appointment.  I guess that means I haven’t had any more really bad days but I really should get on to it).

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12. The aftermath of round 1 chemotherapy

The week after chemotherapy turned out to be what I hope was the worst week of my life.  It was nothing short of horrendous.  On Tuesday, I felt a bit fuzzy in the head, similar to how I had felt after arriving home from chemo on Monday.  I was able to go to my daughter’s school fun run which I was happy about.  I wouldn’t have been able to go to that if I didn’t have cancer! I didn’t feel 100% but things weren’t too bad.  After the fun run I went to the bank before returning home.  I ate a normal dinner that night and went to bed.  So far, so good.

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The fun run. The only fun thing about the week!

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Looking pretty good one day post chemo.

On Wednesday the fatigue was starting to hit.  I was trying to carry on as normal so I dragged myself along to school with my daughter and did reading with her class.  My mum had come over to my house to help out with things so I didn’t also have to take my son with me which made things easier.  After reading, I went home and had a lie down in bed as I was feeling tired.  I then had to see my GP to get a referral for a thyroid ultrasound, as something had shown up in my thyroid on the PET scan.  He said I looked well and asked how I was coping emotionally.  I said I was fine but several people had already suggested I get a referral to a psychologist just to talk about things.  I think it is something that should happen automatically when you are diagnosed with cancer. After the GP visit, I went home and went back to bed.  I was starting to lose my appetite and get a bit of diarrhoea but overall I didn’t think things were going too badly.  I think my mum picked my daughter up from school while I stayed in bed.  She had her acting class that night and she wanted me to take her.  I dropped her off there and went to the supermarket on the way home and then went back to bed yet again.  I was starting to feel a bit cold and shivery and had pain across the back of my neck and shoulders.  I checked my temperature and it was fine.  I didn’t think I would be neutropaenic (you’ll hear a lot about this later so I won’t go into detail now) that soon after chemotherapy but it was important to check my temperature if I felt unwell.  I ate a small dinner in bed that night and went to sleep early, hoping to feel better the next day.

On Thursday, I woke still feeling quite drained.  I had a bit of nausea so thought I’d take a maxolon tablet to knock it on the head.  I had been given two stronger tablets for nausea to take on Tuesday and Wednesday and then had maxolon to take for the following days if I needed it.  As the morning went on, I started feeling worse and worse.  It’s hard to describe how I felt.  I was just completely drained, had no appetite and was struggling to even drink anything.  I think I managed half a sustagen (which came from one of my cancer show bags) for breakfast.  The diarrhoea was worse and I just really felt disgusting.  I wasn’t answering my phone and didn’t even have the energy to read text messages or emails; a sure sign I was unwell.  My friend Ev had planned to visit me that day but I had to let him know I wasn’t up to it. The nurses had told me I should drink two to three litres of water a day after chemo.  I would have been lucky to have drank one litre since Monday so I thought I might be dehydrated. I was trying to sleep to pass the time quicker and hoped I would feel better when I woke up but I don’t really think I slept much.

I was quite unpleasantly surprised by how bad I felt and just could not believe my haematologist had suggested I might be able to work.  I think there was also probably a bit of fear, as being the first round of chemo, I had no idea how long I was going to feel this bad for.  The nurses had told me days 3-5 after chemo would be the worst and Thursday was day 4.  I was starting to think that I might not be able to do this for 6 months.  People had told me I was tough, ‘if anyone can get through this, you can’, but I was not feeling at all tough then.  I was thinking I’d be better off dying rather than have my family see me so sick for 6 months and then I might die at the end of it anyway.  I know that sounds a bit dramatic, but it really was horrid and I’m not sure my description has done justice to how bad I felt.

One of the nurses had said to me on Monday that if I was really dehydrated and struggling, I could go into the day infusion ward (where I have chemo) for some intravenous fluids and then go home.  My haematologist had given me the impression that chemo would be pretty easy but I felt horrendous and knew I hadn’t had much to drink.  I thought I must be dehydrated.  I remembered a time a few years ago when I went to New Zealand for a holiday to visit some friends.  I contracted Giardia and was sick the whole time.  I was still sick on the last night there and the prospect of a three hour drive to the airport and a four hour flight home with an almost two year old was daunting.  I went to the local hospital in the middle of the night and was  given a few litres of intravenous fluids.  By morning, I was almost skipping out of the hospital.  The rehydration made a huge difference to how I felt and the recovery was quick.

I’m not the sort of person who goes to hospital unless I really have to.  I could tell you many stories about people who have presented to accident and emergency departments, who really shouldn’t have, and I never wanted to be one of them. I once avoided hospital because I was studying for exams. I was so sick during the last exam that I went straight across the road to hospital after the exam. I got put in a wheelchair and was admitted with pneumonia.  In the midst of feeling so unwell on the Thursday, I was thinking about how quickly I’d improved after some intravenous fluids in New Zealand. Although I really could not be bothered, I thought maybe I should just pop into hospital for some intravenous fluids and then I’d be able to drink more when I felt better.   I’d either spoken to Jenni or texted her during the day so she knew I was feeling unwell.  In the afternoon I told her I thought I might need to go to hospital for some intravenous fluids.  I was looking for a quick fix to get me back on track. She told me to ring and speak to the nurses (that’s the protocol; if you’re feeling unwell or have any questions, you call the nurses and if they can’t help you they’ll speak to your doctor).  I told her I didn’t even have the energy to make the phone call so she said she would come over.

When Jenni came over and saw me, I think she was a bit shocked by how unwell I was.  I recall her saying “this chemo has hit you like a freight train”, and it certainly had.  She called the chemo ward and spoke to the nurses who in turn spoke to my doctor.  The message from him was that I just needed to drink more. We decided he was trying to teach me a lesson, that I had to be more vigilant with my fluid intake and there would be no quick fixes.  I did think that was reasonable as they wouldn’t want me to keep going in for intravenous fluids just because I couldn’t be bothered drinking.  My mum and Jenni went to the supermarket and stocked up on gatorade, vitamin water, lucozade etc, anything that would be easier to drink than water.  I forced myself to drink a bottle under their close watch and by early evening I finally made it out of bed and onto the couch.

I was definitely starting to feel better by the evening and started returning text messages, telling people I thought I had turned the corner and that I hoped I’d be much better the next day.  I managed half a cup of soup for tea and read a story to my daughter when she went to bed.  Something so simple but it was a bit of an effort. I hated that I’d already spent so much time in bed and that I was relying on other people to do simple things like drop her off at school and pick her up.  She wanted me to do it but I think she understood that I just couldn’t. The next day was day 5 and I hoped I was over the worst  of it.  I went back to bed early hoping to be almost normal when I woke.

I woke to several text messages on Friday and I responded to them, so that was a good sign.  I said I was feeling better than yesterday and hoped to stay that way. I had a bit of nausea and still had constant pain across my neck and shoulders so I asked my husband to get me a couple of panadol and a maxolon before he left for work. He suggested I have an endone for my neck pain so I could ‘float through the day’ but I didn’t want one as I didn’t like the way the fentanyl made me feel before the lymph node biopsy (they are similar drugs).  He got me two panadol and two maxolon which I took and stayed in bed.

A short while later, I got up and was even thinking about having breakfast when I started feeling really unwell.  Again, it is hard to describe how I felt but if I thought the day before was bad, it was nothing compared to the way I felt then. My friend Simone had been asking me for a score out of 10 each day for how I felt.  The scores had been getting progressively lower and that day was a 1, possibly even a zero! I felt like my eyes were rolling around in my head, my head was spinning, I couldn’t talk properly, I was breathing heavily, I couldn’t eat or drink.  I just described it as disgusting! I contemplated taking a photo of myself and sending it to everyone to show them how the ‘good cancer’ was treating me. I managed to text my husband and asked him to come home as I really didn’t think my mum needed to see me the way I was.  He called me and I asked him if he’d slipped me an endone because I thought that might explain the way I was feeling. He couldn’t understand my slurred speech so he called my mum and she told him what I had said.  He said he hadn’t given me an endone but the maxolon tablets were out of date so he was a bit worried about that.  The maxolon was only a few months out of date and I knew that wouldn’t cause any problems.  I just thought I must be really, really dehydrated but it wasn’t making complete sense to me as I had improved the night before and then gone downhill again in the morning.

My mum then rang Jenni and she came over.  She must have been even more shocked than the day before and it can’t have been nice for anyone to see me then.  I was telling them that I couldn’t do this for 6 months. I meant it and I think they understood.  At that point I was thinking about all the people who have a cancer that doesn’t have a good prognosis; if I made it through this horrendous treatment, there was a good chance I’d be ‘cured’.  There must be people who go through this only to be told at the end, ‘sorry, the chemo hasn’t worked’. Unthinkable! Jenni rang Lisey, who again had lots of good advice.  She had also ended up back in hospital with dehydration but not not after her first round of chemo!

I think Jenni decided then and there that I was going back to hospital.  She rang the chemo nurses and told them how bad I was.  The nurses couldn’t give her the OK to bring me in to hospital until they spoke to my doctor but she made it clear that she was bringing me in.  She was a bit concerned about how I would get into the car and wondered if she would need to call her husband (I can call him that, rather than her partner, since they got married one month earlier!) or even if she would need to call an ambulance.  I slowly sipped away at a gatorade while we waited for the return phone call. Finally, it came back after about an hour.  I was being admitted to hospital and would be there for one or two nights.

I dragged myself out of bed, put some clothes on and walked feebly to the car. We were only about 10 minutes from the hospital so the nurses were surprised when we arrived there so quickly.  I was told a bed wasn’t ready on the ward but to go to the day infusion area (where I have chemo) and they would get treatment underway there.  I sat in a chair and some observations were taken.  I remember my blood pressure being 120 systolic (that’s the top number) which is high for me and the nurse commented that she thought it would be lower if I was dehydrated. I was then told a bed was in fact available on the ward so I was escorted there. On the way there the nurse mentioned that perhaps the dose of chemo might need to be reduced and perhaps my haematologist had ‘hit me hard’ because I’m young.  I asked if the first round was always the hardest, hoping the answer would be yes and she said it wasn’t always and that some people cruise along in the beginning and then ‘lose the plot’ towards the end.  I wondered if this was considered losing the plot and if I had more of it to look forward to.

Once I was in the bed in the ward, which was about 1 pm, I started feeling a bit better and was then embarrassed about being in hospital.  I was being admitted with dehydration but I started feeling better without any treatment, so it didn’t make sense.  It was about another hour before a nurse came to see me to insert an intravenous cannula and commence intravenous fluids.  The cannula was put in the front of my elbow so every time I bent my arm the machine beeped and a nurse had to come in.  I was given one litre of fluid over a ridiculously slow rate of 12 hours.  If I was my own doctor, I would have pumped that fluid in over one or two hours.  I was beginning to wonder if this was being done on purpose; putting the cannula in an annoying place, ensuring I didn’t get any sleep with that constant bloody beeping, fluids so slow it could not have assisted in rehydration. Let’s make this hospital admission as painful as possible so she never comes back! The nurses were lovely.  One of them got some dry biscuits and lemonade for me and after not eating breakfast or lunch, I managed to eat and drink that, and I even managed a bit of quiche for tea.  Routine blood tests were done and the results were all normal. I was actually hoping they would show that my bone marrow had been completely wiped out which might mean that I had been given too much chemo and would explain why I felt so terrible. Not so.

I was now convinced that I wasn’t dehydrated and it would appear I hadn’t been hit with a huge dose of chemo.  I wondered if I’d had a reaction to maxolon, which seemed odd as I had taken it so many times in the past (doctors always have it on hand to self-treat hangovers) with no problems.  Or maybe this was just how it was going to be for the next 6 months.  This was how chemo was going to affect me.  Many people were texting me to see how I was and I was not making any secret of the fact that I did not think I could endure another 11 rounds of chemotherapy, regardless of the good prognosis at the end of it.  I had a sleepless night thanks to a hard bed, constant beeping every time I moved and unrelenting neck and shoulder pain requiring pain killers every time I was allowed to take them.  I even asked the nurses to speed up the infusion rate of the intravenous fluid to just get it through but they didn’t oblige.  I should have just ‘accidentally’ done it myself.

I woke on Saturday morning feeling much better, not 100%, but much better.  I had a small breakfast and showered.  I knew I would be going home that day as there was no reason to keep me in, so I packed my things ready to go.  My husband and children came in mid morning to take me home but I was told I’d have to wait for my doctor to come in and see me.  After a while, the one year old was getting restless so my husband took him to the car and my daughter waited with me and made a card from the paper place mat on my breakfast tray.

My doctor arrived and the first thing he said was, “It’s not supposed to be this hard”, to which I replied, “I know, you said it would be easy?”  He said, “Oh, I never said it would be easy.”  That is true, he had never said it would be easy, but that is the impression I got from him; well not easy, but not too difficult.  He asked what had been happening and I told him about the past few days.  I told him I had asked my husband if he had slipped me an endone and he said he had wondered if I had taken anything because what he had been told about how I was did not seem like a normal response to chemotherapy.  I then asked him if he thought it might have been a reaction to maxolon as I’d taken it on Thursday and Friday, and these were the worst days, and I seemed to have improved without any treatment.  He said he had seen a few strange reactions to maxolon and that’s probably what it was.  It certainly made the most sense.  He also agreed that the maxolon being out of date was not the reason for the reaction.  He had more time on this visit, not that consultations in his rooms were rushed, but he obviously didn’t have the pressure of waiting patients, so he sat down and talked a bit.  No, no, still no sympathy but he asked about my job and talked about himself a bit, which I liked.  He also asked me if I had tried to go back to work that week! Seriously! I can honestly say that the thought did not even cross my mind!

So, it was all a reaction to maxolon. My husband was relieved that it wasn’t the maxolon being out of date that caused the problem and also gave himself a pat on the back for giving me two tablets, instead of one, as the two tablets gave me a reaction severe enough to land me in hospital.  Otherwise, he thought, we would never have suspected the maxolon and I would have kept taking it and kept feeling like crap.  Hmmm, he might have been right but I didn’t thank him.

I left hospital very relieved that it probably wasn’t the  chemotherapy that had made me so sick, so there was a good chance the next rounds would not be so brutal.  I had the card my daughter made, safely tucked away in my handbag and I headed home, hoping for a better week if I stayed away from maxolon.

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The beautiful card made by my daughter from the paper place mat on my breakfast tray.

For those of you who don’t have children in prep, I will translate for you:

Dear Mummy,

I hope you will get better soon and I hope you are OK.

Love from M.

And I hope your cancer gets better. I love you

Well, I guess I’ll just have to suck it up and face the next ELEVEN rounds of chemo!

11. Chemotherapy – round 1

Monday 29th July, 2013

I spent most of the week or so leading up to this day working from home, trying to finish as many reports as I could.  This was not forced upon me.  My work had been great; I had received many supportive emails and phone calls.  Again, I am very lucky.  There was no expectation that I return to work prior to starting chemo, or at any time in the near future.  There was no expectation that I complete my reports.  That was my decision.  My job is quite busy and I was very aware that everyone was that bit busier now, being another pathologist down.  I didn’t want to burden everyone further by having them do even more work by completing my reports.  The offer was certainly there though.  I was fortunate also, that I had accrued a lot of sick leave.  I had enough to continue on full pay for the duration of chemotherapy.  I didn’t know if I’d be able to go back to work during the next 6 months but at least there wouldn’t be financial pressure to do so. Several people suggested that I shouldn’t use up all my sick leave.  I will say I was a little perplexed by that.  If you’re not going to use your sick leave when you’ve got cancer when the hell are you going to use it?

In the day or so before chemo, people kept asking me how I felt about starting chemo.  Was I nervous?  It wasn’t an inappropriate question, and certainly not up there with the ‘good cancer’ comments, but I just didn’t find it helpful.  How would you feel about starting chemotherapy? Whilst I very keen to get treatment underway, I would have preferred that I didn’t have cancer and didn’t need chemotherapy.  But I did need it.  I wouldn’t say I was nervous but I wasn’t looking forward to it.  I don’t even know what my advice would be regarding what to say to someone about to start chemo.  Perhaps just let them know you’ll be thinking of them.  Support is important so I don’t want you to feel you can’t say anything right to someone with cancer, just be aware that whatever question you ask (i.e. are you nervous about starting chemo?), they have probably been asked 50 times already.

The day before chemo, I received two ‘cancer showbags’ containing all sorts of things like books, magazines, hats, moisturiser, lip balm, chocolate, lollies, sustagen, fresh vegetables, tissues and even a spew bag! These were put together by two friends, separately, who had researched what might be useful for someone undergoing chemotherapy.  Very thoughtful indeed.  Thank you Lisa and Simone.

My sister Jenni, the one who refers to herself as the favourite, (and in fact, is the favourite at the moment as there have been no comments from my other siblings) had volunteered to take to me chemo as she doesn’t work on Mondays (although she is very busy).  It was a generous offer, which of course I appreciated.  I had asked the chemo nurses if I would be able to drive myself to and from chemo, but my family would not allow it! I went to school assembly in the morning, as my daughter likes me to go, and then I met my sister at home and off we went.

I signed myself in to the hospital and was directed around to the ‘day infusion’ ward. I introduced myself to the nurses who were expecting me, of course.  My first impressions were ‘ there are a lot of people having chemo and they all have hair!’ I probably shouldn’t have been surprised by the number of people having chemo as I have worked on an oncology ward which was always full. I was shown to my chair in the far corner of the L shaped room. I felt like I was being put in the naughty corner.  The woman next to me looked like she was in her 40’s but everybody else in the room looked much older, so it seemed intentional they had put us here.  I don’t actually know if it was but it seemed that way.  Jenni arrived soon after, having parked the car, and was armed with a big camera ready to document my adventure.  She was quite pleased when asked if she was a professional photographer.

There were about 10 chairs in the room.  They are big chairs, a bit like ‘gold class’ chairs but not quite as comfortable.  Things moved pretty slowly.  There was a lot of talking and education which went on all day.  My veins, which are usually good were an absolute disgrace that day, so I had to soak my hands in a bucket of warm water to make them more prominent.  Not a good start for the first of 12 chemo sessions.  Finally it was time to put a cannula in and get things started.  Of course, the nurse missed on her first attempt.  Always the way when cannulating doctors. So she called the charge nurse and a cannula was inserted successfully.

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Sitting in gold class (not quite) trying to bring out those veins!

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In goes the cannula second time around. Ready for take off.

My haematologist popped in to see me.  I think he thought it was going to be a short visit just to say hello before I started chemotherapy but I told him I had a lot of questions. I pulled out my phone because I had saved all my questions in ‘notes’ so I wouldn’t forget anything I wanted to ask.

  • The first question was about the bone marrow biopsy.  He told me it was negative, as expected.  I asked him if it was really necessary and I think he admitted that it probably wasn’t.  He then started talking about conferences and research and I think he said the way lymphoma is staged is all going to change soon and bone marrow biopsies probably won’t be part of staging.  Great timing by me to still ‘need’ one.
  • I asked him if someone with Hodgkin’s has an increased risk of other cancers and he talked about the long term risk of secondary cancers, which is lower now with the current treatment regime (ABVD) than it was years ago with other regimes.   The aim of treatment is to give as little as possible to achieve remission to minimise the risk of long term complications.
  • I asked if there was an increased risk of Hodgkin’s in family members.  He said there is a slightly increased risk of any haematological malignancy in first degree relatives (that’s children, siblings, parents) of people with Hodgkin’s but there is nothing special that’s needs to be done in terms of screening.  So don’t panic first degree relatives!
  • I asked him if you die from Hodgkin’s what do you actually die from?  He didn’t answer that one.  I actually think he said “let’s cross that bridge when we get to it” and I said “well I hope we never get to it”. I assume you die due from multi-organ failure due to all your organs being infiltrated by those bastard cancer cells.
  • I asked him if this chemotherapy works, when would I be considered cured?  He talked about the difficulty in saying someone is cured, and instead use of the term ‘complete remission’ when there is no sign of cancer.  He mentioned again the PET scan I would be having after 2 cycles (that’s 4 sessions!) of chemo and said he expected that scan to be negative!  I was surprised by that.  I didn’t realise the chemo would work that quickly.  He then said that even if that scan is negative, research shows that 2 cycles of chemo is not enough and the cancer would come back if we stopped then, so we’d still have to continue on with the 6 cycles (12 sessions!).
  • I asked him again about going to Bali and again he said not a good idea, but I still thought I’d go.
  • I asked him about my prognosis now that I was stage 3, as he’d said 95% chance of cure, or long term remission at stage 2.  He didn’t give me a definite answer but he again talked about my small volume disease and absence of adverse features and generally gave me the impression that the prognosis wasn’t that much worse than stage 2, despite the fact that stage 3 and 4 are considered ‘advanced stage’ and stage 1 and 2  with no bulky disease are considered ‘early stage’.
  • I then asked him some questions about the risk of tumour lysis syndrome and the need to take the allopurinol and ural he had prescribed but I won’t bore you with the details.

I thought that was enough questions for a quick visit and I’m sure he did too.

Finally it was time to start chemotherapy.  I actually thought I’d be a bit more emotional about the reality of starting treatment for cancer, but I think I remained calm.  You’d have to ask my chemo buddy (that’s Jenni) how I went. A ‘pre-med’ was given first; dexamethasone (a steroid, given to prevent nausea) and granesitron (another drug to prevent nausea).  The first drug that went in was Adriamycin (the A in ABVC).  This drug is red and I was told it goes in red and comes out red, and it did.  I thought I might come up with cocktail names for all the drugs so I could pretend it was fun, but never got past thinking about it. Adriamycin is given as a slow push which means the nurse stands there the whole time.  Bleomycin was next (the B in ABVD) followed by Vinblastine (the V).  Both of these are also given by slow push so again the nurse is there the whole time. Dacarbazine (the D) was last.  This one is given as an infusion over 1.5 to 2 hours.  It stung at times so they slowed down the infusion rate.

While I was having chemo, I noticed my file on the table beside me.  In true doctor style, I opened it and had a look through it.  I’m not sure if anybody else does that but I think it’s pretty uniform amongst doctors to have a snoop. It really only contained a few letters from my haematologist to my GP and in the first letter he described me as a ‘pleasant lady’.  I was quite happy with that although also aware that ‘pleasant’ and ‘difficult’ are the two pretty standard words used to describe patients, so I’m glad he chose pleasant.

At one point early on in the day, the nurse asked me if I’d like her to close the curtain around my chair as she was worried I might see some of my patients.  I had a bit of a laugh and explained that would not be a problem.  I was served morning tea, lunch and afternoon tea so I didn’t go hungry.  There was even enough to share with my chemo buddy.

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Afternoon tea time. Long day!

It was quite a busy day with all this education about mouth ulcers, low neutrophils, look good feel better seminars, wig libraries, excreting chemotherapy in body fluids, looking after myself, etc etc.  When we were discussing the local wig library, I thought to myself, ‘oh that’s why everyone has got hair, they’re all wearing wigs!’.  So, I had a closer look at the lady next to me to see if she was wearing a wig.  Nope, it was definitely her hair.  But then again, I was having chemotherapy too and I had hair, so maybe hers just hadn’t fallen out yet.

There wasn’t much time for socialising with all this education.  Jenni thought she recognised the lady next to me and her chemo buddy so I was busy looking at her name on her drug bag and guessing what cancer she had.  I guessed breast since that is pretty common in women!  Finally, after all the education we started talking to her.  Her name was Karine.  I wondered if I could ask her what sort of cancer she had.  Was that the done thing in the cancer world?  I assumed it wouldn’t be offensive but then she asked me what I had so I didn’t have to wonder any more.  She told us she has stage 2 bowel cancer (that means it is confined to the bowel and hasn’t spread to any lymph node or other organs) and that day was her second cycle of chemo.  She explained that she had noticed blood in her stool (she probably didn’t use that word), and thought she better get it checked out, so went to see her GP, had a colonoscopy and they found bowel cancer. She was fit and healthy, ate well and had no family history of bowel cancer. She had surgery about 6 weeks earlier to have a bit of bowel removed. She would have 6 cycles of what was considered ‘mopping up’ chemotherapy (and in bowel cancer, 6 cycles means 6 cycles), she wouldn’t lose her hair and she had an excellent prognosis with the risk of recurrence being extremely low.

I know what you’re thinking.  “Aha, she got the good cancer!”  But consider this. She’s in her 40’s, she had a bit of blood in her poo and had a colonoscopy, probably expecting they’d find nothing wrong.  She was then told she had cancer. She then had to wait to have an operation to have this cancer removed, and I don’t know how long that wait was but let’s say a week.  It was probably at least that.  Once she’s had this major abdominal surgery, she then has to wait for the pathology results to see what stage this cancer is.  Is it confined to the bowel or has it spread to the lymph nodes?  Given that she’s not a pathologist and can’t pull favours to get early pathology results, let’s say she waited another week for those results.  So that’s about two weeks of agonizing waiting from the time of being told she had cancer to finally being told she had an early stage cancer with a good prognosis.  What sort of thoughts do you think she would have been having during those two weeks?  Probably thoughts very similar to the thoughts I described in my third post.  But that’s not all!  After receiving the great news of her early stage bowel cancer, she gets rewarded with the joys of 6 cycles of chemotherapy and all the side effects that go with that.  Then she gets to worry about long term complications of the chemotherapy and the possibility of developing another bowel cancer, so regular colonoscopies it is for her. So, does anybody think stage 2 bowel cancer is a good cancer?  I certainly don’t.

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Round 1 chemo with my chemo buddy. The favourite sister!

10. Pre-chemo brain?

‘Chemo brain is a well described entity’ which refers to problems in concentrating, learning and remembering that are commonly experienced by patients undergoing chemotherapy.  Lisey describes it very eloquently in her ‘Chemo braino draino’ post which you can read here (such creative post titles!).  It is said that problems with memory and concentration may improve once chemotherapy is complete but there is a possibility that they will be long term problems.  Awesome!

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In the week or two before starting chemotherapy I had quite a few vague moments.

  • I went to a doctors appointment and when I got there I realised I’d left my handbag at home.  Lucky he bulk billed me!
  • I parked my car and turned the ignition off and was about to get out when the car started rolling as I hadn’t put it in park or put the handbrake on.
  • I put my son’s bottle of milk in the microwave for 5 minutes instead of 50 seconds.  Don’t worry, I didn’t let him drink it.
  • There were several occasions when I would say something to my daughter, she would say pardon, and then I’d have no idea what I just said to her.
  • I arranged to meet a school mum for coffee/hot chocolate and went to the wrong cafe.
  • I made myself a piece of toast and cut it up like this:

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Which is how I cut up toast for my one year old son!

And all of this was before starting chemotherapy, so I couldn’t blame it on chemo brain.

(I know what you Tomo’s are thinking.  That all sounds like a normal day in the life of Sonya!)

What about pre-chemo brain?  It hasn’t been described as far as I know but it seems like a true entity to me.  There are many eponymous syndromes and diseases in medicine.  This refers to a syndrome or disease which is named after someone; usually the first person to describe the condition but sometimes conditions may be named after a patient.  Hodgkin’s lymphoma is an example of an eponymous disease, named after Thomas Hodgkin who described it in 1832! Other examples are Parkinson’s disease, Down syndrome and Alzheimer’s disease. There’s even a Baker’s cyst.

Eponyms are a long standing tradition in Western Medicine and being awarded an eponym is regarded as an honour.  However, it is regarded as bad form to attempt to eponymise oneself.  I don’t care about that.  I’ve got an eponymous cancer, I think I’m the first to describe this pre-chemo brain and clearly, I had it, so I’m claiming it.  From now on, anyone who displays problems in concentrating, learning and remembering (what may be better recognised as blonde moments) in the weeks prior to commencing chemotherapy has ‘Baker’s brain’.

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9. The bone marrow biopsy

Wednesday 24th August, 2013

Well this is not something I was looking forward to. I wasn’t terrified, I just knew it wouldn’t be pleasant.  The doctor who would be doing it had called me the day before to make sure I was happy for it to be done under a local anaesthetic as opposed to a general and to ask if I had any questions.  I was OK, not happy, with a local anaesthetic and didn’t have any questions.

I was being admitted as a day patient for the biopsy which meant I had to fill in some paperwork for the hospital.  As per usual, I left this until the last minute and was filling it in that morning when my cousin Sonya arrived at my house to take me to hospital.  There were a lot of questions.  Now, I need to tell you something about my crazy family; not the wogs, the other side, the Tomo’s.  We have this ongoing competition where we try to make any particular occasion “all about me”. Sonya is usually the best at it but I think I’m winning hands down at the moment. There is also a competition, as you may have gathered from some of the comments, about who is the favourite.  My mum and dad have received many cards from their ‘favourite daughter’ over the years.  They have more than one daughter! The competition is very fierce amongst the cousins, (and their partners who are honorary cousins), in particular.  Everyone wants to be favourite cuz!  My sister took full advantage of me living in a country town for several years, but now that I’m back, I’m gaining on her and may have just overtaken.  The real competition now is to be my favourite, especially with my life insurance policy! I’ve digressed.  On this form that I was filling in for hospital was a question about who was going to look after me after discharge.  This is what I wrote:

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Sonya loved it! A quick photo was taken and sent to my sister and off we went to hospital.  I should add here that Sonya is also single.  Given the pathetic response to my offer to conduct interviews for a date with Christian (only a married woman and a cougar expressed any interest!), I think I’ll just send Sonya and Christian on a date.

I signed the necessary forms at the reception desk and went to the day theatre area where Sonya and I sat in the waiting room.  After short wait, I was called in and Sonya was left in the waiting room.  I was taken to a bed where a nurse took some observations (temperature,heart rate etc) and told me I was next on the list of bone marrow biopsies for the day (4th out of 5 for the day).  She also told me that I wouldn’t need to get changed into a gown. She asked me if I had anyone with me in the waiting room.  I said my cousin was out there.  She said “Oh yes, your favourite cousin.  I saw that in your file.”  I said, “Sonya will be ecstatic that you noticed.”  She then said that Sonya could come in and that she would go and get her.

I wasn’t there for this bit, but Sonya tells me that the nurse went out into the waiting room and called out quite loudly “Favourite cousin Sonya”.  Sonya stood up proudly and the nurse told her that she could go through and see me.  She was grinning from ear to ear when she came in.

The rest of the morning was not so enjoyable.  Sonya left when it was my turn for the biopsy.  I think she wanted to stay to watch but I told her that wouldn’t be necessary and off she went to the shops.  The doctor came over and introduced himself.  He looked about 12.  I must be getting old.  He told me he was a pathology registrar which means he is training to be a pathologist, sort of like an apprentice.  I asked him how far he was into his training and we had a bit of a chat about that.  He then must have seen on my hospital stickers that my title was Doctor and he asked what sort of doctor I was.  “I’m a pathologist”  I said.  I could see his heart sink and he really tried his hardest not to show what he was thinking which I’m pretty sure was “Oh fuck!”  As a registrar, it would be pretty nerve racking to perform a procedure on any doctor, but to perform a procedure on a doctor who is a consultant, or specialist, in the area in which you are training would probably be close to the top of the list of things you hope you never have to do at work.  We continued the chit chat, talking about an exam he would need to do which would probably mean he would need to come where I work to get some specialised training.

He then explained what he was going to do.  In the area of pathology I trained in, there was never a need for me to learn how to do bone marrow biopsies.  I had a fair idea of what it involved but didn’t know the specifics.  I was then asked to roll onto my side and pull my pants down a bit.  The biopsy was going to be taken from the back of my hip/waist, as illustrated in the image below.

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Unfortunately I got a look at the needle he was going to use and it was BIG!  So, pants were down, drapes were placed over me, he put his gloves and gown on then put some antiseptic over the area of interest.  He put the antiseptic over quite a big area and I could feel it going in to my natal cleft (that’s my bum crack for all you non-medico’s).  He then injected some local anaesthetic.  He waited  a while and then asked for another vial of local anaesthetic.  At that point I said, “ooh, special treatment?”  He was putting in extra local anaesthetic as he really wanted to make sure it didn’t hurt.  He muttered something under his breath about every patient being the same and just following the same procedure.

The procedure is actually called a BMAT which stands for bone marrow aspirate and trephine.  So, once the local anaesthetic had taken effect, he performed the aspirate part of the procedure.  This involves sticking a needle through the bone of my hip into the marrow, like in the picture above, and sucking some marrow out.  I think he said about 10 ml, maybe more.  He told me I would feel a sharp pain and a drawing or pulling sensation, which I did.  It probably lasted about 5 to 10 seconds.  Not too bad.  The next bit was the trephine.  This involves actually drilling a core of bone out.  He drilled into my bone and I could feel some vibration but not really pain.  He then had to jiggle quite hard, apparently to make sure the core of bone separated and stayed inside the hollow needle.  As he was doing that, he explained that sometimes the core doesn’t come and out if that happened he would need to have another go.  “That won’t happen”, I said wishfully.  He pulled the needle out and I could hear the fear in his voice when he said “It’s happened.  I’ve only got cortex.  I’m going to have to do it again”.  Cortex is the outside of the bone.  He needed to go through the cortex and into the spongy bone of the marrow.

So we went through the process again.  This time it hurt a bit more and the result was the same.  No marrow.  So he had to drill into my bone a third time.  This time it was a bit more painful again.  It wasn’t excruciating but it was uncomfortable.  It was quite possibly the thought (and feeling) of having a great big needle being twisted around in my hip bone and having it go in so deep that it felt like it was going to come out the other side, that was worse than any pain I was feeling.  The nurse looked at me and said “you’re over it aren’t you?” to which I replied “Yep!”  The needle came out and there was a sigh of relief.  “Got it this time”.  He had the core of marrow but he told me it was three quarters hanging out of the needle so he almost lost it again.  I don’t think I would have let him have a fourth attempt.  He put a dressing on and I had to lie on my back with pressure on it for about half an hour.

Whilst I still had my back to him, he asked if I had to have another bone marrow biopsy, would I ask for a general anaesthetic.  I said I probably wouldn’t and I think he was relieved by that answer.  I told him it was probably worse for him than it was for me.  I didn’t enjoy but I think he was VERY nervous doing a bone marrow biopsy on a pathologist.  As he moved on to the next patient I said something to him about coming to my work for his specialised training and exam.  He just scurried away quickly.  I think it was the bum crack.  I don’t think he could look me in the eye professionally knowing he had seen my natal cleft.  I joked with my colleagues that if he did come to our work to do the exam, I would examine him and fail him three times to get my revenge!

Sonya returned soon after that and I gave her a run down of what happened.  Then my haematologist unexpectedly popped in to see me.  I thought I wouldn’t see him again until Monday when I had chemotherapy.  He asked how it was and I told him it wasn’t too bad but certainly not pleasant having three goes at the trephine.  No sympathy of course.  He then said “So your PET scan showed some lymph nodes around the spleen so you’re stage 3”.  I asked him about the bone marrow and told him the radiologist had already called me and told me the bone marrow might be involved.  I can’t remember his exact words but he said something along the lines of radiologists always overcalling it and saying the bone marrow is involved.  I asked if the bone marrow involvement was mentioned in the report and he said it did but he ignored it.  All the while, I could feel Sonya’s eyes darting between us.  She later told me that we were talking “doctor talk” and she had no idea what we were saying but she heard stage 3.  She had thought I was stage 2 because that is what I had told everyone based on the CT scan.  So I was stage 3, not stage 4.  I was pretty happy (perhaps not the right word) about that. The bone marrow biopsy hadn’t been looked at of course but he seemed confident it wouldn’t be involved.  He explained that Hodgkin’s tends to spread in a particular pattern going from lymph node group to lymph node group and I got the impression it would have been more widespread in the lymph nodes in the abdomen before it went to the bone marrow.  I also asked him if lymphoma is in the bone marrow is it everywhere in the bone marrow or could it just be in some areas.  He said no, it’s not everywhere.  Which begs the question.  What is the point of taking that tiny sample of bone from the hip and diagnosing bone marrow involvement based on that?

Anyway, I was stage 3.  Stage 3A to be precise. When the haematologist left, Sonya and I had a conversation that went like this:

  • Sonya: “Oh my God, are you OK?”
  • Me: “Yes. Why?”
  • Sonya: “You’re stage 3”.
  • Me: “Oh, I already had the results of the PET scan and I thought I was stage 4”.
  • Sonya: “You bitch! You didn’t tell anybody” There was probably an expletive in there too.
  • Me: “Well if I told you I was stage 4, you all would have panicked wouldn’t you?”
  • Sonya: “Yes, probably”.
  • Me: “Wel that’s why I didn’t tell anybody”.

I still believe it was the right decision not to tell anybody I thought I had stage 4 disease.  They would have panicked and I wouldn’t have been able to reassure them because I didn’t know how that would affect the prognosis.  The visit from my haematologist was fleeting so I didn’t get the chance to ask him what my prognosis was now that I was stage 3, but I got the impression it was only marginally worse.

For the next couple of days I felt like I’d been kicked in the backside by a rather large horse but the pain was manageable and it was soon a distant memory.

5 sleeps til chemo……..