2. I hope it’s lymphoma

Monday 8th July, 2013 (Sorry, this one is long).

Just a couple of things before I start.  Firstly, did you notice how I wrote FaceBook with a capital B in book in the previous post?  Clearly I have no idea!  I now know it’s Facebook, but I still haven’t joined.  The pressure is mounting!  Secondly, thank you Lisa for hacking into my blog (well it’s not really hacking if I gave her my password and asked her to do it) to fix up a few settings to make it easier for everyone to sign up.  And thirdly, thank you everyone for your comments and support.  Quite tear jerking!

OK, onto I hope it’s lymphoma……..

It’s certainly not something you ever think you’ll hope for but it’s what I was hoping for, as I knew the alternative was worse.  The signs of cancer started about two months earlier; only I didn’t recognize them then.  It started as an intensely itchy scalp.  I remember saying to my daughter one night, “Have you got nits? My head is so itchy!”  She told me her head wasn’t itchy and I didn’t think much of it.  Then, a few nights later, while drying her hair after a bath, I saw some nits!  A late night visit to the chemist for nit treatment products followed by treating her and then myself.  It’s not easy to treat yourself for nits and I probably did a really crappy job.  But it didn’t matter, because I didn’t have nits.  For days after the treatment my scalp remained itchy and I was becoming a bit self-conscious about how much I was scratching it.  I considered re-treating myself but multiple people checked my head and reassured me that I didn’t have nits.  Why was I so itchy then?  The itch then moved down around my neck and upper chest, at the level of the end of my hair.  Maybe I was still itchy because I was having an allergic reaction to the nit treatment products.  That seemed plausible to me but Dr Google didn’t agree.  I couldn’t find any reports of that.  Then the itch became a bit more generalised.  Was it a reaction to new washing liquid?  I’d been using Dynamo and had recently bought Cold Power.  That made sense too so I put all the Cold Power away in a cupboard and went back to the Dynamo.  Still itchy.  My husband suggested that maybe it was fiberglass fragments from his clothes, which would have been deposited there at work and perhaps got onto my clothes in the washing machine.  So many any plausible explanations but they were all wrong.  The itch improved a bit.  It was still there but it wasn’t too annoying so I just ignored it hoping it would go away, but it didn’t.

On Saturday night, 6th July, my husband had taken our daughter to the MCG to watch a Geelong game.  While they were living it up in the MCC, I was sitting on the couch at home watching the game on TV.  I scratched my itchy neck and that’s when I discovered it.  I felt some lumps in my neck and above my right collarbone.  I knew they were lymph nodes and I knew they were enlarged.  The biggest one was on the right side of my neck just past the midline.  It didn’t move when I swallowed so I knew it wasn’t my thyroid gland.  That was a consideration, as I knew I had a nodule in the right lobe of my thyroid.  It had been identified on a CT scan in 2008 when I was admitted to hospital with pneumonia after an exam.  I hadn’t done anything about that nodule.  Was it actually cancer and had now spread to all the lymph nodes in my neck?  Interestingly, this largest node seemed to be in exactly the same place where I’d felt something about 10 years earlier, when as an oncology resident, I thought I had lymphoma.  My registrar reassured me that I didn’t.

I had always had slightly enlarged lymph nodes in my neck, probably about the size of a pea.  Now I could feel bigger lymph nodes.  You can get enlarged lymph node in your neck for all sorts of reasons, most commonly an infection, but I knew the lymph nodes above my collarbone were not a good sign. I can’t remember now if I extracted the information from some deep recess in my memory or if it was Dr Google, but I became aware of the association of itchiness and lymphadenopathy (that’s doctor speak for enlarged lymph nodes) in lymphoma, most commonly Hodgkin’s lymphoma.  I felt under my arms and in my groin – no lymph nodes there.   I was pretty certain it was lymphoma but at that point decided I would keep it to myself.  No need to worry anybody else.  I’d just observe the lymph nodes for a while and see if they changed.  That lasted just over one day.

On Monday morning, I woke up early and showered with the intention of going to work.  Whilst in the shower, I decided that was ridiculous and I needed to find out if I had cancer or not.  I got back into bed and told my husband about the lumps I’d felt.  I asked him a question, which I’m sure he thought was very odd.   “Do they feel like hard concrete or firm rubber?”  He thought about it for a while and said, “firm rubber”.  When I felt them, which I had multiple times, sometimes I thought firm rubber and other times hard concrete.  I was glad he thought firm rubber because that meant lymphoma as opposed to a solid cancer (like metastatic thyroid cancer or breast cancer or melanoma).  Lymphoma was the better alternative, but not a good cancer!!.  I sent a text message to the nurses at work letting them know I wouldn’t be in that day as I just had a few lumps in my neck I needed to get checked out.  They said they were sure it would be nothing.  I was sure it would be something but I didn’t tell them that.

I rang My GP’s surgery to make an appointment to see him.  I was given an appointment for 3 pm that afternoon but asked them to ring me if they had any cancellations and I would come in earlier. Not long after I received a call to let me know there had been a cancellation at 9:30 am so off I went to see him.  I really like my GP.  I think good GP’s are hard to find so I was very happy when I found this one, almost by default, as did my sister, but that’s another story.  When I entered the room I was clearly stressed and thinking the worst (well, thinking what turned out to be reality).  I am sure my GP thought I was a typical over-reacting, self-diagnosing doctor at first but once I told him about my lymph nodes and the itch and he felt my neck, it was obvious he agreed with me.  He said it definitely warranted investigation with blood tests and a CT scan and if we were entertaining a diagnosis of lymphoma we might as well do a CT scan of the chest at the same time.  Usually a patient would be given a request for a CT scan and would ring up themselves to make an appointment but my GP made the phone call and asked for an “urgent” CT scan.  They told him I should come in straight away.  He gave me the request slip and I noticed that he had requested a CT scan of the neck, chest, abdomen and pelvis (not just neck and chest as he had said to me). He also gave me a certificate for a week off work.  Clearly, he thought it was lymphoma.  It is hard for a doctor to hide what they are thinking from another doctor.

I had the blood tests and then headed straight to the imaging place for the CT scan.  I quickly checked the names of the reporting radiologists for the day and texted a colleague and friend of mine who works in both clinical and post mortem radiology, to ask him if these radiologists were any good and could be trusted reporting my CT scan!  He said they were.  My friend is an excellent and well-respected radiologist (just ask him! kidding, kidding) so I value his opinion.  The CT scan involved drinking some oral contrast, getting changed into a gown that doesn’t cover much, having an intravenous cannula inserted for injection of intravenous contrast and lying on a table to be passed through a donut with arms up, arms down, holding my breath, breathing out etc.  I had not one, but two injections of intravenous contrast so I got to experience that warm feeling of wetting myself twice, which anyone who has a CT scan with intravenous contrast would know well.  By the way, for those who haven’t had such a scan, I did not wet myself; the contrast just makes you feel like you have.  There was a screen in the room which had a CT image on it.  Of course I looked and I reckon I saw a few golf balls in my neck.   After the scan, the cannula was removed and I got changed back into my clothes.  I felt something wet running down my arm and onto the gown….blood.  Hmmm, had the lymphoma infiltrated my bone marrow so I had no platelets and my blood wasn’t clotting? Probably not, but the thought crossed my mind.

Some time after I got home, my radiologist friend texted me with the phone number of the radiologist who would be reporting my scan and told me to call him.  I felt a bit uneasy about that as I didn’t think he would want to give me what was probably bad news but I was told he was expecting my call so I called him.  He said he hadn’t looked at my scan yet and asked if I wanted to come in and look at it with him.  It reminded me of when my obstetrician asked me if I wanted him to get a mirror after he’d put a few stitches in after childbirth.  No thanks!  Would anybody say yes to that?  I told the radiologist I didn’t want to come in but he could just call me back after he’d had a look.  He didn’t call me back but I did get a call shortly after from the receptionist at my GP surgery asking me to come in as soon as possible.  We are taught in medical school to deliver bad news face to face so I knew what it meant.  I wouldn’t have minded if my GP told me over the phone, as it didn’t really seem like it would be a delivery of devastatingly unexpected bad news to me.  It was just confirming what I already knew.  I was pretty certain it was lymphoma but while I was in the waiting room the thought did cross my mind that it could be another cancer and I could be riddled with it and find out I had months to live.  My GP called me in and told me the radiologist had called him with the results and didn’t feel comfortable calling me back to tell me.  I understood and respected that.  The CT scan showed enlarged lymph nodes in my neck and mediastinum (that’s the central part of the chest) and the findings were highly suspicious of lymphoma.  I was OK with that and commented that it was better than the alternative (but not good!).  I do recall however, being a bit surprised by the lymph nodes in the chest.  You can’t feel them so I guess I just hadn’t considered they could be involved too.  The CT scan didn’t show any enlarged lymph nodes below the diaphragm, which is important in the staging of lymphoma.  More about that later.

The next step was to confirm the diagnosis, which is where pathologists come in.  A tissue sample needs to be sent to a pathologist to look at under a microscope so they can diagnose the disease.  The radiologist had told my GP that the lymph nodes in my neck would be amenable to core biopsy.  This involves sticking a fairly large needle into a lymph node to get a core of tissue, which is then sent to a pathologist.  I politely told my GP that would be a waste of time as to diagnose lymphoma, you really need to remove a whole lymph node.  I wasn’t being a smart arse, I know that because I’m a pathologist.  We then decided that the best course of action would be to refer me to a haematologist who could then decide how to proceed with confirming my diagnosis.  Again, my GP made the call for me and told the receptionist he needed an “urgent” appointment for me.   The appointment was made for 3 pm the next day.

I went home and went to bed.  I didn’t want to talk to anyone.  I just needed to get my head around the fact that I had cancer (although not confirmed) at 38 years of age (which I would later hear was a good age to get cancer!).  I let work know I wouldn’t be in for the rest of the week and I sent an email to my dear friend Lisa, just to make sure she went through the same stage!  From what I had seen she had handled her diagnosis and treatment with unbelievable strength and courage – just read her blog!  You can do that here, if you haven’t already.  I left it to my husband to tell my family that I probably had cancer.  That can’t have been fun for anyone but I certainly didn’t want to do it.  I told him to make it clear that I didn’t want any visitors, phone calls or text messages and they respected that.  I think I sent them a few texts later in the evening to reassure them that I was OK.  I quickly learnt that reassuring other people is a big part of a cancer diagnosis.  My mother in law had our kids for the day as it was school holidays and my husband and I were both supposedly going to work that day.  We had dropped them to her place the night before for a sleep over and she dropped them back late that afternoon.  I didn’t talk to her either.  I was hiding from the world.

An interesting aside in this whole thing is the fact that I organized life insurance just five days earlier.  Life insurance is something I knew I should have but just had not got around to organizing.  I often joked with my husband was that my life insurance was not having life insurance as if I had it, he might knock me off to claim the payout!  About a week or two earlier I had been sent information about a life insurance policy.  It had been sitting on the desk at home next to the computer so I could sign up when I got around to it.  On Wednesday 3rd July, my one year old son was in the playroom with his eight year old cousin.  I was in the kitchen helping my daughter with something.  I heard a noise, which I thought was cutlery from the toy kitchen dropping on the floor as my son is always playing with it.  Then I heard him scream.  I ran in to the playroom to find him lying on his back with his head through a smashed window and great big shards of glass pointing at his face and neck.  I had to maneuver him out so he didn’t get slashed on the glass.  He came out of it with a few little scratched but that little incident made me realize how easily accidents can happen.  As soon as he went to sleep I arranged life insurance.  There was an option for serious illness cover so you can get a payout if you are diagnosed with a serious illness, like cancer.  I didn’t think I needed that.  I was just getting cover so my family could be looked after if I died in a car accident or something.  Don’t I wish I’d got that serious illness cover now?   I am strangely comforted by the fact I have organized life insurance.  It probably means I (or my family) won’t use it.  You only need insurance when you don’t have it.  Or was it a sign from above?  My son’s head went through that window for a reason; to make me organise life insurance and ensure my family would be looked after financially when I died.  Since I don’t believe in that crap, I’m going with the former.

My son's head was through that hole in the window.

My son’s head was through the hole in that window.
A sign from above or just an accident?

5 thoughts on “2. I hope it’s lymphoma

  1. Oh princess!! Big well done to u for writing your blog !! It’s a fantastic insight for us wondering and hoping u are okay and wanting to ring u everyday to ask – but then battling with the possibility that that could actually be harassment and a BIG pain in the arse for u!! So now we can read for ourselves – and shed a tear in private! You are a strong amazing woman!! 💗💗

  2. Baker….when you found out that it was most likely a lymphoma I was on the google. When you told Nat and I what was going on we were a mess (well me more then Nat as she is always tougher then me…and of course you are tougher then me!). Nat can always keep it together… I could not imagine what you were feeling/experiencing at this time. All I knew at this stage you were such a strong person and you could handle what was to come!!

  3. This is why i dont believe in coincidences or accidents , because things happen for a reason!!! ALL the time! Im sorry your sons head went through that window, but then again he wasnt seriously injured and because of that you organised your policy and what not. Things are always a blessing in disguise. much love to you , your son and family! Your story popped up in google for me while i was actually, well doing something i shouldnt be// googling about whats happening to my body 😦 I have an EXTREMELY itchy scalp its driving me nuts, i have had two swollen lymphs one at the base of my skull on neck and the other above that more so on the skull i discovered these about 2 months ago… I’ve been on a heavy corse of antibiotics , no change in lumps… my scalp only started itchy id say about a week ago now.. I ALSO had this same lymph swollen about 10 years ago but did nothing about it cuz it went away.. I’m 31 female , and also from melbourne Australia and i write a blog too! Check it out if you want 🙂 its all real and raw xo

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