3. Meeting the haematologist

Tuesday 9th July, 2013

When you get cancer, you suddenly own a lot of people.  My haematologist, my surgeon, my chemotherapy nurse, my chemo buddy.  The list goes on.  I’d done all the preliminary checks on the man who would be my haematologist – googled him, asked colleagues if they knew him.  I found out he is an associate professor, so that means he’s been around for a while, and somebody who used to work with him told me he is brilliant and ‘only does blood cancers’.   Sounds like somebody I want in my corner.  He is also a great cyclist and follows Le Tour avidly, so I am told (so you will approve of him Ev).  I was happy with the doctor who had been chosen for me and didn’t think I’d need to be seeking a second opinion from the outset.  I had an appointment to see him at 3 pm.

I think I spent most of the day in bed prior to the appointment, mostly thinking about dying.  I thought about my funeral.  I thought about how my children would be without me.  I knew they would cope but it would completely change their lives.  I wouldn’t be there to help them with homework, give them a hug when they hurt themselves, go to school plays, go to their weddings.  Would they become drug addicts because they didn’t have the influence of a mother in their lives?  I thought about buying them birthday presents for the birthdays I wouldn’t be here for, but then thought that might be selfish, constantly reminding them of me when they’d need to move on.  I was more worried about my six year old daughter because she knew me and I’m pretty sure she’d miss me.  I’ve read about other people being more upset about leaving the younger children who didn’t get the chance to get to know them, but for me it seemed better that my son was too young to really remember me.  He is also a complete daddy’s boy at the moment, so that makes it easier.  I even thought about making caramel slice (I make a devine caramel slice, if I do say so myself) for everyone to eat at my wake.  I knew I didn’t have a certain death sentence but these are the things you think about in the early days.

Now is probably a good time to talk about the staging of lymphoma.  There are four stages:

  • Stage 1 – one group of lymph nodes involved
  • Stage 2 – two or more groups of lymph nodes on the same side of the diaphragm involved (eg. Lymph nodes in the neck and chest)
  • Stage 3 – lymph nodes on both sides of the diaphragm involved
  • Stage 4 – involvement of one or more extralymphatic organs (eg. Bone marrow, liver)

There is then an A or a B placed after the stage depending on the presence or absence of ‘B’ symptoms – fevers, weight loss, night sweats.  Based on the findings of my CT scan and the fact I didn’t have B symptoms, I would be stage 2A.  Obviously the earlier the stage, the better the prognosis.  The presence of B symptoms also gives you a slightly worse prognosis.

So, just before going to see the haematologist, I was sitting on the couch and I felt hot so I thought I would check my temperature.  I checked it about four times and it ranged from 37.8°C – 38.2°C . I had a fever, so I decided I had B symptoms, which probably meant I was going to die.

Off I went to meet the haematologist, stressed and tearful.  It was a fairly quick consultation.  He was very matter of fact.  No sympathy but I wasn’t looking for that.  I just wanted facts.  He took a history and then I got on the bed to be examined.  He felt the lymph nodes in my neck and also felt in my armpits and groin.  He felt my liver and spleen to see if they were enlarged.  I wondered why since he would have known from the CT scan that they weren’t.  I then sat up and he thumped my spine, listened to my heart and lungs and asked me to put my arms above my head and hold them there.  I knew why he was doing all these things – thumping my spine to see if I had any pain from bone marrow infiltration, holding my arms above my head to see if my face went red due to enlarged lymph nodes obstructing my superior vena cava (SVC obstruction – an oncological emergency!).   I didn’t have any of the signs he was looking for.

I sat down on the chair again and asked about treatment.  His response was “usually we walk before we run” or was it crawl before we walk?  It was one of those.  He didn’t want to go into too much detail until the diagnosis was confirmed.  I looked at him with a raised eyebrow as if to say “Come on, you and I both know what we are dealing with here.”  He said it was either Hodgkin’s lymphoma or sarcoidosis but his money was on Hodgkin’s.  If it’s Hodgkin’s, he told me he expected good things as I had small volume disease (that means small lymph nodes) and no other adverse features.  I didn’t know what the adverse features were then and I didn’t ask.  I told him about checking my temperature four times and asked if that meant I had B symptoms.  He chuckled at the fact I’d checked it four times and said I didn’t.  He told me treatment would probably involve 6 cycles of ABVD chemotherapy.  He told me what ABVD stood for (the drugs that are given) but didn’t say much more.  I probably wouldn’t have radiotherapy because the field would be too big.

So, the next step in this adventure was a lymph node biopsy.  That’s an excision biopsy which means removing a whole lymph node under general anaesthesia.  He asked me if I had a favourite surgeon and I said I didn’t know any local surgeons.  He said he’d refer me to a surgeon of his choice and then see me again one week after I had the biopsy.  I went out to the reception desk to get an appointment made with the surgeon.  The receptionist mentioned the name of the surgeon.  It was somebody I went to university with.  I haven’t seen this person since university as we worked in different hospitals.  I am sure he is a very capable and accomplished surgeon but I just wasn’t happy about someone I went to university with operating on me, even if its an operation he could probably do with his eyes shut.  Chances are, he might not have been happy about operating on someone he knew either.  The receptionist called and fortunately the surgeon was on holidays for the next two weeks.  She knew I wasn’t going to wait that long so an appointment was made with another surgeon for the following Monday.  This was an appointment just to meet the surgeon to arrange the lymph node biopsy, not to actually perform the lymph node biopsy.  I did some quick calculations; one week until I see the surgeon, perhaps another week until the biopsy is performed, and then another week until I see the haematologist again to get the results and find out what lies ahead for me.  3 weeks!  And that’s with private health insurance.  I was stunned.  I couldn’t believe it would take that long.  How long would it take in the public health system?

I had gone into the appointment thinking there would be a sense of urgency in getting a diagnosis and getting on with treatment.  I actually thought I’d be hooked up to chemotherapy by the end of the week or early the next week.  I was comforted by the fact that the haematologist was in no hurry.  I walked out of that appointment feeling much calmer.  To be honest, I felt like I just had a cold, something minor.  Perhaps things weren’t so serious, but I still needed to know sooner than three weeks and get treatment underway.  I took the card with the appointment time for the surgeon, but I knew I wouldn’t be going to it.

4 thoughts on “3. Meeting the haematologist

  1. Oh my god – that afternoon of thinking about dying, and the impact on your kids would have been horrific! And the planning of what to do for them once you are gone… I have done the “imagine if.” Thing – ., “what would I do to help my kids cope and remember me” and that mere ‘imagine’ has been to hard and painful” to think about. So I cannot begin to imagine how painful and traumatic that afternoon was for you, thinking at that time that u had a death sentence and this was real life – no “imagining’ about it!! Big hugs princess! Xx

  2. Jesus! Even though I thought I knew most of this, the emotion of reading your innermost feelings is numbing. And it just makes me so proud to say that you are MY sister. It was evident right from the start that you shielded the facts from those close to you so as to not have us worry. You are so much more courageous than me. I couldn’t imagine anywhere else I’d rather be than walking this “adventure” with you. X

  3. I had a lot of very similar thoughts. It’s amazing where the threat of a diagnosis and the waiting for it takes you. I recall that you seemed to get through this period very stoically, almost business like within just a few days. I lingered in this zone for 16 days but then I was always good at loitering. Looking forward to some of that caramel slice. x

  4. Hi Melissa,
    I’ve just tuned into your blog- great work. I know how you were feeling when you thought about leaving your kids alone in the world. In 1995 at age 33 I was in a similar situation. With ‘black shadows’ on my spleen, i too underwent a myriad of tests. The only thing they couldnt rule out, was lymphoma, so my only option was a splenectomy. As it turned out, it was sarcoidosis, a disease you mentioned your doctor was considering. I can recall upon receiving the news that i might have cancer, thinking about my two young children then aged 5 and 3. What will happen to them? How can I leave them at such a young age? It was a gruesome feeling and brings tears to my eyes as I re-live that frightening time in my life. Try not to go there. Sending our best wishes, we know how tough you are, love Caroline and Bernie x

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