47. The real story

This is the real story; things I would have written in post number 45 if I was telling the truth, but I had to tone things down so as not to stress everybody out!

I suppose the first sign that things were not going to turn out as hoped was way back in September when I had the re-staging PET scan. You may recall that my haematologist said he expected that scan to be negative. It wasn’t negative. My haematologist was on holidays when I had that scan and the results were given to me by the caring, sympathetic, female haematologist who was covering for him. She told me the scan was almost negative and that it was a fantastic result. At the time I thought she was a bit overly positive and I was interested to know what my doctor thought about the results. I asked her if you could have a response like mine and then have progression of the disease at the end of treatment. I can still see the expression on her face. She looked at me as if to say ‘don’t be so pessimistic’ and her response was “Well yes, but it is very rare.”

When I next saw my haematologist, in his typical fashion of not letting much out, he said my PET scan results were “OK”. I left that appointment not knowing what he really thought so at my next appointment, I demanded answers. That is when he told me if that scan was negative he would have been super bolshy (confident) that all would be well at the end. Since it wasn’t negative, he was just bolshy as opposed to super bolshy. I was reassured by him but I did have some intermittent nagging thoughts that I wouldn’t be in remission at the end of chemo as I had read about people who had bulky disease (lymph node masses in their chests up to 20 cm across) who had negative PET scans after 4 rounds of chemo. I didn’t have bulky disease, yet my PET scan wasn’t negative.

I wasn’t troubled by these thoughts. I pushed on with treatment, counting down the chemo hits, counting down the number of crappy Wednesdays after chemo, hoping and planning for remission at the end.

As I approached round 12 of chemo, I just had a feeling that it wouldn’t be the end. I had no concrete evidence at that point, it was just a feeling. And that is very odd for me as I’m not the sort of person who has ‘feelings’ or makes predictions about things. If I had achieved remission, that feeling would have just been the normal doubts of a cancer patient. If I’d seen my haematologist before round 12, I would have told him that I just didn’t feel like it was the end. If me having a ‘feeling’ isn’t weird enough, this one is just outrageous. I actually felt like 6 months of chemo was too easy. Not that there was anything easy about chemo, I hated it, but for reasons I can’t explain, I just felt like it would be too easy to be rid of CANCER, that horrible disease that kills so many people, with just 6 months of chemo. Maybe that was because it did seem easy compared to what Lisey had been through; 10 months of treatment including three operations, chemotherapy and radiotherapy. I just had chemotherapy and one small operation. And I still had my boobs.

Now, in hindsight, I wonder if this feeling I had, that it wasn’t the end, is the reason I couldn’t be excited about the last hit of chemo; I said at the time I couldn’t be excited because I didn’t know if it really was the last one. I also played down any references to celebrating the end of the chemo. Several people wanted me to have a huge celebration for my birthday and the end of chemo, but I was hesitant and insisted it was just a mini celebration of my birthday and the fact I was guaranteed not to have any chemo in January.

There may have also been signs all the way through that I was misinterpreting. I had a couple of hospital admissions with fevers (which disappeared by the time I got to hospital). After those admissions, occasionally my temperature would go up a bit, but not high enough for me to call the hospital. I was focussed on neutropaenia and infection but maybe it was the proliferating (growing) lymphoma that was giving me these intermittent temperatures, because it can do that.

Being a doctor, I always had a look at the results of my blood tests before each round of chemo. I noticed my LDH and ESR were always a little bit elevated. I won’t bore you with the details of what these are; they are just two of the many tests that are done. I asked my haematologist about the LDH during one appointment and he said it was probably elevated due to cell breakdown (the chemotherapy killing cells) and it wasn’t concerning. I forgot to ask about the ESR.

I had felt a few lymph nodes in my neck but they didn’t seem to getting bigger, my haematologist wasn’t concerned about them and I wasn’t itchy.

Despite these feelings and possible signs that all was not well, I had no definite evidence that my cancer was still growing as I approached ‘the end’ of chemo and I chose to assume or hope that I would be in remission. I was happy for Lisey to throw streamers at me and blow party whistles as the last drop of chemo went in. I was happy for the chemo nurses to sing a song to me. I booked trips to New Zealand and Bali on the evening of my last chemo; I knew it was a bit risky, but I did it and convinced half of my family and a few friends to come to Bali with me. Hell, I had even signed up for a 60 km walk that I was telling everyone was 2 months after I finished chemo. Clearly at that point, I didn’t really think or know that I still had cancer.

That all changed a couple of weeks after finishing chemo. I can’t remember exactly when it was but I felt a very small lymph node on the right side of my neck. It was definitely new but it was seriously only about 1 mm  across. I wondered if that was the one the haematologist felt when he said “yeah that ones about 1 mm”. I kept an eye on that lymph node and over the next few days or weeks, I was pretty sure it was getting bigger. I was also having what felt like hot flushes and my temperature was going up a bit. I didn’t know if that was lymphoma or chemopause (chemotherapy induced menopause) but in combination with an enlarging lymph node it was somewhat  worrying.

I told a few people about my concerns, including Lisey. I didn’t tell anyone in my family as I knew that would completely stress them out and there was no point doing that because I could have been wrong. I wonder if the fact I told Lisey means I didn’t think she’d be stressed about the possibility of me still having cancer, or I didn’t care if she was stressed. I think I told her because I knew she understood cancerchondria, and I was hoping that was what I had. I probably also told a few people so that when the scan came back positive, I had proof that I really did think it would be positive and I wasn’t just being a smart arse saying “I knew that would happen”.

As the days went on and the PET scan approached, I was absolutely certain that lymph node in my neck was getting bigger so I was pretty sure the PET scan was going to be positive. I didn’t just tell my radiologist friend I was prepared for a positive result, I told him I was expecting a positive result.

So, on 28th January, I headed off for my third PET scan (and CT scan), the one that was supposed to tell me I was in remission. I had an early appointment so I was seen promptly. No need to bore you with the details because I’ve been through it all before and there was nothing special about the procedures. When I was having the CT scan, one of the radiographers said he recognised my name and asked if I worked locally. I said I didn’t but that I recognised his face. We worked out we went to the same high school.

After the CT scan, I texted my radiologist friend and told him I was all done and asked him how long it would take him to have a look. He must have called very soon after but for some reason my phone went straight to message bank. I listened to the message, just him asking me to call him but I could tell in his voice that the news was not good. Surely if it was negative he would have left a joyous message telling me so.

I had to wait to be given a copy of my CT scan films. Once I was given them, I got changed back into my clothes, went to the toilet and headed outside to my car to make the phone call. There was pain in my friends voice as he told me the scan was positive. I can’t remember the exact details and I don’t think he went into a lot of detail. It didn’t matter really, it wasn’t negative. I wasn’t in remission. I just remember him saying there was quite a bit of activity in my chest and some low down on the right side of my neck but nothing in my abdomen or anywhere else. He was very apologetic but it wasn’t his fault. He certainly did not enjoy delivering that news to me but I was very grateful he did. I wasn’t going to wait a week.

Although I was very prepared for that news and I was expecting it, it was still shit news and very unpleasant having it confirmed. I really had hoped I was the world’s biggest cancerchondriac. My immediate reaction was that I wanted to call my haematologist and change my appointment to that day so I could find out what was next. I spent the next hour or so sitting in my car sending texts and ignoring phone calls, although I did answer the phone to Lisey. I hope she feels special.

Word spread quite quickly. Jenni was gutted and promptly posted “FUCK YOU CANCER” on Facebook. That wasn’t just for me, by the way, it was also for her dear mother-in-law who was in hospital with advanced ovarian cancer. Cousin Sonya headed over to my house to be with my mum, and as she does, she brought food (lunch) and went through my fridge and pantry and made a meal with whatever ingredients she could find. She has earnt herself the nickname, Sonya ‘Ready Steady Cook’ Tomlinson, although she prefers to be known as Sonya ‘Fav Cuz’ Tomlinson.

As I drove away from the radiology place, I realised I’d left my CT scans in the toilet so I stopped and called them and yes, they found them in the toilet. They told me to come back later to get them as they were waiting for the PET scan films to be printed.

When I arrived home, Sonya and my mum greeted me in the garage as I drove in, and they shut the roller door of the garage. Then they just stood there and watched me as I gathered my things. I’m still not sure what that was all about. Perhaps Sonya will explain.

I went inside and got my daughter alone so I could tell her the results of my scan. I had told her that I was having a “big X-ray” that day which would hopefully show that all the cancer was gone. When I told her the results, her response was “I know”. To which my response, in my head, was “WTF??” My mum and Sonya hadn’t told her the results. I didn’t think she was psychic but it was just a bit weird! Then she said, “I knew that you didn’t have cancer anymore”. She had misheard me. I explained that I did still have cancer. She had a bit of a confused look on her face and said “I don’t want you to have cancer anymore”, and then she moved on to something else and was laughing. And that was it. Much like the very first time I told her I had cancer. It’s good that she’s too young to fully comprehend it.

As the day went on, I decided I wasn’t going to change my appointment with the haematologist. I knew that whatever was next for me, which I thought was most likely a stem cell transplant based on a previous discussion I’d had with my haematologist, was not going to be pleasant, so I really was in no hurry to find out. I also figured that this bastard had been happily growing away through chemotherapy for the last few months, so another week wasn’t going to make any difference.

I forgot to take my daughter to her swimming lesson that afternoon too. I guess I had other things on my mind.

I must say, one thing that I was quite pleased about, was that pretty much everyone told me that it was just plain shit that my PET scan wasn’t negative. Nobody tried to find a positive, except me (jokingly) and that was good. Clearly you’ve all been paying attention and my blog has served its purpose! Also, before the PET scan, nobody told me that they “just knew” it was going to be negative, which is good, because I find that quite annoying. Nobody knows what the result is going to be and you look a bit silly when it’s not negative and you apparently just knew it would be. I knew everybody was hoping and probably expecting it to be negative, but sadly it wasn’t.

I didn’t wallow in self pity over the next week, I just felt really pissed off. Pissed off I’d had six months of shitty chemo for no apparent reason other than to endure the side effects. Pissed off that Jenni had wasted so much time coming to nearly all of my chemo sessions with me. Pissed off that my mum had done so much to help me through treatment that didn’t work. Pissed off that I wasn’t going to be able to repay all the school mums for the help they’d given me and I’d be asking them for even more help this  year (I know they don’t for one second expect me to repay them, but I’d like to). Pissed off the re-staging PET scan was almost negative giving us all the impression the chemo was working.  It would have been better if that scan showed no response so we could have moved onto a different treatment that may have worked, rather than push on with 8 more rounds of the stuff. I could go on with my reasons for being pissed off but even I’m getting bored.

So, what to do now? I think this is all I can do to get through the next stage of my adventure.

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35. Results are in

Thursday 19th September, 2013

Sorry Helen and Lesley. I’ve already made you wait a lot longer for the results than I had to wait, so that’s probably a bit unfair.

After the PET scan, I went to the local shopping centre as I needed to get a few things. One of those things was a mermaid nightie for my daughter. I had seen it in a catalogue and knew she would love it. The store only had it in a size 5 and I needed a 7. I then went to the supermarket to get a couple of groceries. I lined up at the check out and the lady in front of me, who had a lot more than me, let me go in front of her. That NEVER happens to me. Must have been the scarf. Now I just ask people if I can go in front of them if I’ve only got one or two things. I’m making use of the cancer card while I can!

After shopping, I went home with about half an hour to spare before I had to head off to the appointment to get my results. While I was at home, it occurred to me that what I had seen on the CT scan of my neck and interpreted as big lymph nodes which had taken up the contrast, were actually blood vessels with intravenous contrast in them, which is a completely normal finding on a CT scan when you’re given intravenous contrast! Lymph nodes wouldn’t even take up the intravenous contrast.  They take up the radioactive glucose for a PET scan, but intravenous contrast is not given to highlight lymph nodes (I’ll have to confirm that with a radiologist). I had just had a quick look at the CT scan and jumped to the worst conclusion.

I headed off to the appointment and parked my car in the hospital car park. When I got out of the car, a lady who was leaving gave me her parking ticket as she still had more than an hour left on it. It only saved me $1 but it was a very nice gesture and it was the second good thing that had happened that day. Must have been the scarf again. The thought crossed my mind that perhaps this meant the results of the PET scan would be good, since as the saying goes, ‘good things happen in threes’, or is that bad things?

I went into the hospital and upstairs to the haematologists’ rooms. I didn’t have to wait very long. She called me in and she was smiling. ‘Have you seen your results?’ she asked. I told her I hadn’t. I can’t remember her exact words but she said the results were great. She printed out a copy and gave it to me and carefully compared it with the results of the first PET scan, and told me that this second re-staging scan showed only one or two lymph nodes in my chest that were still showing activity (indicating that there was still cancer there). There had been a dramatic improvement in my chest and there was no evidence of cancer in my neck, in the lymph nodes around my spleen or in my spleen. The first PET scan had been suggestive of lymphoma in my spleen although my haematologist wasn’t certain if it was there or not, but this one showed no evidence of it. The radiologist who reported the first scan also raised the possibility of bone marrow involvement although my haematologist was quite firm in his opinion that there was no lymphoma in my bone marrow. This scan indicated that my bone marrow looked normal.

I mustn’t have reacted much to the news that the scan showed a dramatic improvement, as the haematologist kept telling me it was great news. It was fantastic. She said if the scan had been done after three cycles (6 treatments) of chemotherapy instead of two cycles (4 treatments), it probably would have been completely negative. She said my cancer is responding to the chemo and it is excellent news. She then went on to say after two more sessions of chemo I’ll be half way and then I can start counting them down. She was very, very positive and was also trying to give me a strategy to get through the 8 further sessions of chemo I had in front of me.

I asked her if people ever respond like I have but then the cancer has progressed when the PET scan at the end of treatment is done. She said “well yes, but that is very, very rare” and again reassured me that things were great.

I left the appointment and before I exited the hospital I sent the following text to a few people who were desperate to know the results of the scan:

Good things happen in threes. Today a lady let me go in front of her at the supermarket, then when I parked my car at the hospital a lady gave me her parking ticket because there was more than an hour left on it. And my PET scan is almost negative. Doctor very happy. She said if they’d done it after 3 cycles instead of 2 it would have been completely negative.

My phone was then running hot. Text messages, phone calls. I couldn’t keep up. Everyone was VERY excited and relieved. Jenni texted me and said she was almost crying. Almost? I would have thought that result should bring on some tears!

As I drove away from the hospital, I was feeling quite good about the results but I wasn’t excited. It was definitely a huge relief to know that all the side effects I had experienced were not just horrible effects of a treatment that was doing nothing for the cancer. It would make the side effects that little bit easier to tolerate in the future. I didn’t want to be negative Nelly but it was impossible to feel excited when I was only one third of the way through treatment and I still had more than three months of chemotherapy and the associated side effects to endure. Eight mores sessions, which was twice as many as I had behind me. I did spread the word however (although not too widely), that it was good to know that the good chemo was kicking the good cancer’s arse!

I also thought about other people with other types of cancer who go through chemotherapy and experience all the horrid side effects but have no idea whether it is actually working or not, as they don’t have a PET scan after a few cycles to assess how the cancer is responding. People like Lisey with breast cancer. These people usually have surgery, the aim of which is to remove all the cancer, before they commence chemotherapy (but sometimes things are done in a different order) so there is essentially no cancer left to assess with a scan. The chemotherapy is given to take care of any stray cancer cells which might be floating around. There is just no real way of knowing if the cancer responds to that particular chemotherapy. You just can’t compare different types of cancers and their treatments. It’s like comparing apples with oranges. Lisey later texted me with these very thoughts, that she would never really know if the chemotherapy she was given had any effect on her cancer cells. I did feel I was in a fortunate position knowing that my chemotherapy was working.

I drove to the nearest shopping centre to try to find that mermaid nightie for my daughter. Before I went in, I had a feeling they wouldn’t have it because I’d already had my three good things for the day. They didn’t have the nightie but I did find some lovely mermaid bathers. I gave them to her that night and told her I’d had a test which showed my cancer was nearly gone so I bought her a present to celebrate. She was pretty happy with that – both the test results and (probably more so) the bathers.

That evening I texted my radiologist colleague and thanked him for the good PET scan result as I had asked him to make sure it was negative. I also asked him whether he thought my bone marrow did actually have lymphoma in it on the first PET scan or whether the radiologist had overcalled it, which my haematologist had thought was the case. The appearance of my bone marrow was different on the re-staging PET scan so I was wondering whether that actually meant there probably was lymphoma there initially and there now wasn’t. My radiologist colleague agreed that  radiologists often overcall the bone marrow (that is, say it looks like it has lymphoma in it when in fact it doesn’t) and that the appearance on the initial PET scan probably represented reactive change rather than infiltration by lymphoma. Thinking about it later, I decided that my bone marrow probably looked different on the re-staging PET scan because the chemotherapy was wiping it out! I have no idea if that is correct or not and apologies if this paragraph has completely confused the non-medical readers.

So, how did I feel about the results once I had really had time to think about things? I knew they were good results but I also knew they could have been better. And of course, a lot, lot worse. My haematologist (not the one I saw to get the results, the male one who I had seen from the start and would continue to see when he got back from holidays) had told me that he expected this PET scan to be negative. It was nearly negative, but it wasn’t completely negative, so what did that mean? I didn’t have bulky disease (that is, my lymph nodes weren’t greatly enlarged) but I had read about people with bulky disease who had a negative PET scan after 2 cycles of chemotherapy. So given that I didn’t have bulky disease and the PET scan wasn’t negative, did that mean the response wasn’t really that great after all? It probably didn’t because some people have no response at all to the type of chemotherapy I am having (ABVD) and at least I was responding. I just didn’t know what it all really meant.

And I don’t really believe that good things happen in threes. If the lady in the supermarket didn’t let me in front of her and the lady in the car park didn’t give me her parking ticket, my PET scan still would have been almost negative.

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The lucky ticket. It’s a shame it wasn’t a tattslotto ticket!

34. The second PET scan

Thursday 19th September, 2013

The day had finally arrived when I would find out if the chemotherapy was having any effect on my cancer. It was the day of the follow-up PET scan. If you need to refresh your memory on what a PET scan is, click here to read about my first PET scan. It was only a few days before this second PET scan that I started writing this blog, so many people were aware I had strong opinions on inappropriate things to say with someone with cancer. As a result, I don’t think  anybody really knew what to say as they were worried about saying something inappropriate. That actually suited me fine. I was happy for people to say nothing. What can you say? Good luck – not really appropriate because luck has nothing to do with it and it’s not an exam or a job interview. It is something you have no control over. Some people just said they were thinking of me and hoped the results were good. That was appropriate. I don’t recall if anybody even said this but I would suggest you don’t say “I just know the results will be good” because actually, you don’t know and then what are you going to say if they’re not good? And don’t ask “Are you nervous?”

I dropped my daughter at school and headed straight to the radiology centre for my 9:15 am appointment. I was feeling a bit emotional that day. At the time, I didn’t think it had anything to do with cancer and the anticipation of finding out what the scan showed. It was about other things going on in my life at the time, but looking back maybe the cancer stuff was a factor. I went up to the desk and was told to take a seat, and I waited and waited and waited. I think I waited close to an hour which I know is not long if you’re in the public health system, but in the private system with probably the first appointment of the day it was a long time and it pissed me off a bit. The scanning was going to take a couple of hours as it was.

Finally my name was called and I was escorted into a small room where I was given some oral contrast to drink (for the CT scan) and two radiographers fussed around, neither of them wanting to be the one to have to put an intravenous cannula in a doctor! I gave the lucky candidate the good arm and she went for a nice juicy vein in my cubital fossa (front of the elbow) and much to her relief, the first attempt was successful. She was however, a bit embarrassed about all the blood that spilled all over the floor.

I was then taken into the room with the iron walls where I was expecting to see the ancient looking, big metal machine in the corner, which I was planning to take a photo of, but it wasn’t there. Had I imagined it last time? The radioactive glucose was simply injected from a small syringe and I was left to radioactivate. The radiographer said she would be back in 50 minutes. There was no radio with fuzzy reception this time. Just me and silence. I don’t know how long I was left there for but when the radiographer returned, she apologised for leaving me so long.

I was taken into the PET scanning room. I didn’t have to get changed into a gown this time. I was just asked to remove my bra and when I was lying on the thin table I was covered with a blanket and pulled my pants down to around my knees. The scan was much the same as last time. I had to lie very still with my arms by my side and I was very, very slowly passed through the donut. When that was done, I was expecting another scan with my arms above my head but I was told I was done and could get off the table. I asked about the second scan and they said it wasn’t needed and they only usually do that with the first staging PET scan. Were they telling the truth? Or did they not need to do it because this PET scan still showed cancer everywhere so it wasn’t really important exactly where it was? Or was it showing no cancer so they knew the scan with my ams above my head would be pointless? I was thinking too much.

I was then asked to drink another cup of oral contrast prior to the CT scan. Since there was no ancient looking metal machine in the room with the iron walls, or anything else remotely interesting enough to take a photo of for my blog, I took a photo of the cup of oral contrast. Very interesting! And Lisey, the private oral contrast doesn’t taste like aniseed. I’m not entirely sure what flavour it was, but it wasn’t aniseed.

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The cup of oral contrast.

The CT scan was quite uneventful. This time I did have to put my arms above my head, so I had two injections of intravenous contrast (and hence felt like I wet myself twice), one for the scan with my arms by my side, and one for the scan with my arms above my head. The CT scans are much quicker than the PET scan so that part was over with quite quickly.

The radiographer told me to go to the front desk to sort out payment and then to wait and he would give me a copy of the CT scan films to take. I told him I didn’t need the films. I actually didn’t want the films because I didn’t want to be tempted to look at them and misinterpret them. He told me my haematologist always wants his own hard copy of the films. I thought that was odd because I hadn’t taken a hard copy after my first CT scan back in July, but then it occurred to me that that CT scan had been requested by my GP, not my haematologist.

So, I took the films and headed out to the car. I tried not to look but I couldn’t stop myself. I pulled out one of the several sheets in the envelope and it just happened to be scans of my neck, where most of my enlarged lymph nodes were in the beginning. It looked to me like there were a lot of prominent lymph nodes which had taken up contrast. Shit! I told myself not to be stupid, and to wait, and I didn’t look at any more films. It was only a matter of hours until I would see the haematologist.

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?