8. The PET scan – now I feel like I’ve got cancer

Thursday 18th July, 2013

I received a phone call on Wednesday to inform me of my appointment time for the PET scan.  It would be the next day, Thursday 18th July at 9:30 am.  They asked if I was claustrophobic and I told them I wasn’t. I texted my radiologist friend to let him know and he said he would make sure I got the royal treatment. I am lucky to have these connections and every time I text or speak to a colleague to pull a favour, I think of all the people going through this in the public health system who must have agonising waits for appointments, scans and worst of all, results.  People like Lisey, who had to wait two weeks for the results of her mastectomy.  Those pathology results would have been available a few days after her surgery.  I wish she’d told me at the time.  I would have tried to pull a favour to get her those results earlier.  But I didn’t know I had cancer then so we weren’t texting every day.

After seeing the haematologist on Tuesday, I really felt calm.  I felt like I was exaggerating when I said I had cancer.  I was comparing myself to Lisey and all that she had been through (listed in her Kylie and Delta post) and I really felt like I was insulting her with any suggestion that we were going through a similar thing. She just said “stop comparing yourself to me.  It’s all shit”.  Right again.

I told my sister and cousin about my haematologist’s parting words, “It could be worse”.  We decided he was right.  It could be worse, one of them could have cancer!

On Wednesday I visited my GP to get my now famous continuous subcuticular stitch removed from my tiny surgical wound.  He commented that the wound looked beautiful and put steri-strips on it which stayed there for a few more days. I updated him on where things were at.  He suggested that I probably wouldn’t be back at work for quite some time and said that from what he had heard, the treatment for Hodgkin’s lymphoma was pretty intense and a hard road.  I said that from what the haematologist had told me, it sounded like it would be a walk in the park!  I wasn’t sure who was right.  I assumed it would be somewhere in between.

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The surgical wound after removal of the stitch and steri-strips. If you can’t see it, that’s because the cosmetic result has been achieved!

The PET scan was quite boring and uneventful.  I don’t think I bothered to check the names of the reporting radiologists that day.  I got changed into a gown and was escorted into a room with iron walls.  There was this ancient looking, big metal machine in the corner.  I wish I’d taken a photo of it now.  Next time.  An intravenous cannula was inserted and I was hooked up to said big metal machine. This machine contained the radioactive glucose which would be infused into me. Glucose is taken up by metabolically active cells, such as cancer cells.  They suck it up as an energy source so they can continue to grow madly, which made me wonder, if I’m having such a big glucose hit, are all these cancer cells going to go on a feeding frenzy and multiply like crazy?  Oh well, chemotherapy was just around the corner.  I was told to lie still and I wasn’t allowed to use my phone as that would make my brain active and might affect the results.  I was left in the room for 50 minutes.  There was a CCTV camera in the roof so I couldn’t get up to any mischief, like sneak my phone out.  There was a radio on a chair but reception was quite poor due to the iron walls.  So I lay there for 50 minutes listening to fuzz.

After that I was escorted to the PET scanner.  It’s similar to a CT scanner (which will probably mean nothing to anybody who has never had a CT scan), only the donut (the bit you pass through to get scanned) was a bit longer, hence the question about claustrophobia, and the table I had to lie on was very thin.

A PET scan.  Not really!

A PET scan. Not really!

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This is what a real PET scanner looks like.

I had to lie completely still (again) on the table while I was passed twice through the donut, once quite quickly for the CT scan part and once very slowly for the PET scan part.  I had to hold my arms above my head as I was scanned from head to toe.  I think that took about 20 minutes.

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Arms above my head like this. That’s not me in case you’re wondering.

They checked the scans and said they’d need to do another one with my arms down to get a better look at my neck.  Bugger!  That one was a bit quicker though. I was told they do a CT scan followed by the PET scan and superimpose the scans over each other to see what area of the body the activity in the PET scan corresponds to.  The PET scan shows bright coloured areas which are referred to as areas of activity, so cancer is said to ‘light up’ on a PET scan. I am not a radiologist so my description may not be entirely accurate.  If I wasn’t so far behind with this blog I would have asked my radiologist friend to write that bit so it was completely accurate.  If you’re really interested which I suspect you’re not, you can google it to find out all the finer details.   After that, we were done.

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This is my PET scan. Upper chest. The bright red, yellow, green and blue areas are my enlarged lymphomatous lymph nodes!

I got changed back into my clothes, was bulk billed for the PET scan and given a card for a free hot chocolate at the hospital cafe.  Royal treatment! I enjoyed my free hot chocolate, with a muffin on the side, and then went home, still calm. Lisey and I exchanged a few texts and I commented how having cancer was like a full time job with all these scans and appointments.  She asked when I would get the results of the PET scan and I said probably not until Monday week when I have chemotherapy and see the haematologist………….unless I called on my radiologist friend to get the results for me.  So another text was sent and he was on the job.

Not long after that, I got a call from the radiologist who was reporting my scan (not my friend).  He said he was sorry he had missed me that morning as he had been told I was coming in and he was going to say hello (royal treatment!).  He then asked if I wanted to know the results.  Sure, why not?  He told me about the lymph nodes in my neck and chest (yep stage 2, know about them) and then said there were lymph nodes around my spleen that were involved and my spleen was marginally enlarged and showed a bit of activity so might be involved (stage 3, heart rate increasing) and there were areas in my bone marrow that also showed some activity and looked suspicious (stage 4, heart stops).  He asked if I’d had a bone marrow biopsy yet and apologised about the bad news.  I managed to say “that’s OK” before hanging up the phone and bursting into tears.

I remember thinking, “Stage 4.  Fuck! This thing is going to get me!”  If I didn’t feel like I had cancer that morning, I certainly felt like it after that news.  People had been saying to me “you’ll be fine, you found it early”, and I probably had found it earlier than a lot of other people would have, but I was stage 4!  Not early! How bloody long had these little bastards been quietly sneaking around my body?  I’d only been itchy for two months. I texted Lisey and told her the awesome news.  She went into overdrive with sympathy, empathy, researching the stats (informing me that my 5 year survival stats were still better than hers).  She even offered to jump in the car and drive to my place, a mere two and half hours away.

I should not have got those results from the radiologist.  I should have waited until I saw the haematologist so he could tell me exactly what they meant.  I didn’t think it would change the treatment, but I knew it would change the prognosis. But how much would it change it?  That’s why I should have waited and got the results from the doctor who was treating me.  This is probably an example of why doctors make the worst patients!  I told Lisa I didn’t really know what this all meant and that when I saw my haematologist he’d probably just make me feel like I had the flu instead of a cold.  I texted my husband to let him know the results and told him not to call me as I didn’t want to talk about it.  He called me.  I decided straight away I was not going to tell anyone in my family as I knew they’d be beside themselves with worry and I wouldn’t be able to reassure them as I didn’t know what it meant.  I considered calling my haematologist to ask him what it meant but then I decided I would be patient and wait, and perhaps punish myself for being so stupid so I would never do it again.

I calmed down after a few hours and reassured myself.  If I was stage 4, I still didn’t have B symptoms, I had small volume disease and I did’t have any other adverse features so the prognosis was probably still very good.  If I didn’t die, the glory would be bigger.  I could say “Fuck you cancer!  Stage 4 and you still didn’t get me!”  Sorry, a few F bombs have found their way into this post.  I just decided I wouldn’t think about it anymore.  Well, I would try not to anyway.

I actually didn’t do too badly.  On Friday, I went to an extended family lunch gathering with ‘the wogs’ as we affectionately call them.  I don’t know if they know we call them that.  Oh well, they do now!  I’ve got the cancer card so I won’t get in trouble.  Jenni started it anyway.  Again, there were instructions; no crying and I don’t want to talk about it. They did pretty well.  There weren’t too many questions and I managed to keep it together.  I remember Jenni asking me on the way there when I would get the results of the PET scan.  I told her I would get them when I saw the haematologist on Monday week.  She asked if I was worried about it and I told her I wasn’t.  I should take up poker, but then I’d actually need to know how to play it.

‘The wogs’ are all the relatives on my dad’s side of the family.  There are a lot of us; apparently about 85 in total, ranging in age from several months to 93 years. Four generations.  There are fairly regular Friday lunches, almost exclusively attended by the women.  I’ve only been to one previously, when I was on maternity leave.   Thanks to cancer, I could attend this one too.  ‘The wogs’ also get together every Easter for a four day holiday at a caravan park in country Victoria (usually attended by 30 to 40) and every Boxing Day at the home of whoever volunteers to host it.  Everyone, Jenni has volunteered again this year and she said you can all wear your shoes on her cream carpet, even if it’s raining. Credit must go to Lesley, who we affectionately call ‘The President’.  Might as well get it all out there! She didn’t know about that nick name either.  She’s even saved as ‘Lesley President’ in my phone. Lesley has a steely and unwavering, even unforgiving determination to make sure this family sticks together, and for that we thank her.  There are not many families out there who get together as much as this one does.  Most just talk about it, like my mum’s side of the family.  Us cousins are always saying we need to get the whole family together but it never happens. Every family needs a President!  So Tomo’s, nominations are open! If you don’t realise the importance of family before you have cancer, you certainly realise it and appreciate them when you get cancer.  I already appreciated them but now I love them even more!

My daughter was given T.E.D. to bring home from school for the weekend.  T.E.D. stands for Treat Everyone Decently.  He is a teddy bear and each weekend one student, who has treated everyone decently that week, gets to take him home to spend the weekend with their family.   He also comes with a journal that you have to put photos in and write about what you did with T.E.D. for the weekend.  That was probably very good timing as we were quite busy with T.E.D, so there wasn’t much time to think about anything else.

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T.E.D. went swimming……….

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Rock climbing………..

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and fell asleep with my son.

While we stayed up late on Sunday night completing the journal!  No time to think about cancer in your bone marrow!

While we stayed up late on Sunday night completing the journal! No time to think about cancer in your bone marrow!

22 thoughts on “8. The PET scan – now I feel like I’ve got cancer

  1. I actually nearly snorted reading parts of this. Tell your cousin Sonya to pull her finger out and become madam president for your Tomo dos.

  2. The President here. Well I did laugh and cry at your evil sense of humour. I accept the title with pride and glad you all realise I will not relent at keeping this family together despite the resistance. Thanks Jen for the offer again. We’ll talk.
    Well Mel you have done it again and you don’t know how hard it was that day to keep the ‘wogs’ from falling over you and smothering you with love and questions you are just lucky I have such good control over them.
    Keep up the good work and the good fight and kick this thing before Easter cos you are competing in everything next year. Pregnancy is the only exception. Someone has to kick Jenni’s arse.
    Love you much. Xx

  3. Well, firstly! I cannot believe the strength you have to think for a whole week you thought you were stage 4 and were going to die. How did I not see this in your body language? I even asked if you were worried about the results. I guess you’ve never been any different. As a kid, you never said much and never really sought approval or advice from anyone. And now, after being diagnosed with cancer, you somehow seem stronger than the rest of us. It’s hard to comprehend.

    Secondly, I like the fact you are starting to get cocky in your posts as it has made me laugh, very loudly! We are more than happy to host Boxing Day at our house but if anybody walks on my cream carpet with dirty shoes, they will be kindly asked to pack up their belongings and go home!

    Thirdly, I think mum considers herself the President of our family, however, I believe Sonya is up for the challenge.

    That’s it from me. Funny post. I hope Lesley still loves us. X

  4. Good one miss dobbing in your sister like that (I like it) but you know you can get away with it,you’ll never change,once again amazing writing how much I have learned with more to come keep it going xx

  5. This adventure sure let’s out all the secrets, I think the “wogs” knew their nickname, but I don’t think the “President” did. I have enjoyed your blogs, your humour has been amazing (would still rather there wasn’t a need for them). Don’t forget we have organised a Tomo reunion in October. I certainly can see a book in the future. Love Mum

  6. Pam you are and have been an honorary wog since you said I do. We were always asked if we were sisters and I was even mistaken for you at Doug’s 21st remember. So Wog you are. As for the President label. Loovvee it. With it comes power. I did tell Melissa before. Her Wog blood is strong stuff and will do her well in this adventure.
    She is amazing. You are Melissa we are learning so much and are in absolute awe of you. X

  7. Well, I really can’t remember who started the wog name but it wasn’t me. That doesn’t mean that I am not happy to be an honorary wog. As for President I will be brave and accept responsibility. As for President for our family, I think Jenni is a good choice. Melissa you have really started something here. xxx

  8. WOW..Again you brought tears to my eyes. Yes ignorance is bliss, I can’t imagine what those few days thinking you had stage four would have been like.
    I would like to reassure you that the public system is actually pretty good. Most people you deal with are beautiful and kind. I only had one bad experience, a four hour wait to see my surgeon at a public Hospital, I now go to his private rooms! Another thing I like about the public systems is the magazines, 1990 Home Beautiful, and Woman’s Weekly from 5 years ago. A bit of retro reading fills in the time waiting…we aren’t called patients for nothing!

    As for the Wogs…what can I say? We are so lucky to be part of a loving, supportive family (even if it’s by marriage). Their love and support got me through some shitty days…so yes thank you all…xxx

    I do think you should take up poker…I actually believed we could walk on the carpet! How silly of me.

    Sending lots of love your way always.
    Amanda

    P.S. if there is one perk in all of this,it is the cancer card…use it well and use it often…xxx

  9. Nominations for president are now open,jenni 2/1fav sonya 5/1 but will shorten if learns to answer phone,doug 10/1 but he might forget see what you started Melissa xx

  10. ok then I am happy to nominate and might just take a bit of the 10/1 on offer(if I dont forget – thanks Max). Will it be a 30 day thing like the labour party and every Tom Dick & Harry gets a say or should we just get on with it. Do any of the wogs or half wogs get a vote. Need to know these things. This is all because of you Melissa and as much as Jenni will hate it you are now funnier than her.

  11. Hi, I have just read your Blog, I was very touched as you described your journey or should say adventure, every word you wrote I felt and experienced, as 12months ago I was diagnosed with non-Hodgkin Lymphoma, you are amazing to write your experience, as I know exactly what you have been through, not easy I must say, but will love support from family and friends will help get through this horrible ordeal, I actually work with your Aunt Karyn at ANZ, would like to keep in touch even if you don’t know me, my email romapafum@bigpond.com, you have help me by. reading your Blog, “I’m not alone”, I wish you best of luck, stay strong, positive and believe!!! Roma

  12. Attention Tomos. This is a very important position and not to be taken lightly. With the title (or in my case without it as I didn’t know I had it) comes great responsibility. You must organise get togethers, organise venues and events and the most difficult of all tasks. The dreaded family photo usually taken once per year. That alone requires amazing organisational skills and the wrath of the less involved family members uncooperative drunks and the odd smartarse. So nominees be warned and good luck.

  13. Hi turtle i remember the day you where born..went to the hospital to see our new niece and we all stood there and said s……she copped the full wog looks…there you were a beautiful baby girl with jet black hair you looked like a little doll…mum and dad did not have a name for you……the nurses were calling you Melissa…hence how you were named…I remember you had so much hair your mum use to dry it with a hair dryer..I gave you your first hair cut …I think you where about 8 weeks old…..just to let you know my work mate Roma who has contacted you is a wog also…so happy Roma has found comfort and support in yor blog…..the WA tomlinsons could look at forming their own chapter……we could become Australia wide…will be thinking of you next week Melissa love auntie Karyn……yes Jenni my name is spelt with a y…..Ps…..your godfather is sitting on the couch in ugg boots trackside daks….a man of few words..but he does worry about you and sends his love

  14. Thanks for the heads up Lesley and I agree, a positition not to be taken lightlly. May be the elder statesman in the west should have first option or as Karyn suggested he could head up the WA chapter. Just need to clear up one thing Melissa – for the purpose of the exercise are you considered to be a wog or an Aussie ?.

  15. If I may speak on Melissa’s behalf and as President I am entitled to this honour. Also considering this is her Blog, all of us wogs born in Aussie but proud of our heritage consider ourselves to be “Aussiewogs” and the descendants of two amazing, loving and caring Sicilians who loved this country and breathed every day just for their family and were adored for it. And Mel you have them on your side.

  16. Ha ha, I’m not part of the family, just a good friend and even I know they were called ‘ the wogs’ and went camping at Easter. Enjoy our time together x

  17. Just for the record, you did offer to help me get path results quicker, being a big wig pathologist and all! Just like the offer of a car park at the hospital morgue and checking on the status of my radio with local connections. Always offering to assert your medical superiority! Lol. I’ll also admit that your stage 4 news threw me for a six and left me totally speechless. I felt physically ill, skipped a meal and had a little cry for you. Aren’t I nice! I’m not sure you ever came back and told me you were stage 3 so I’m glad you have a blog that did.

  18. Baker… I have tried to go back to the start of your blogs to make comments but could not work out how too… sorry. So will do from the ones I can find. What I recall from this stage is that is that you are the strongest person I know who can get though this awful cancer and the treatments involved. I remember crying many times a days for you during this stage ( however still being able to function at work with no support from management) … but always in the back of my mind….Baker is the strongest person I know and she will get though this. There are many people that love her and will support her. I know that you will beat this…might not be easy but she will do it.
    x

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