Monday 30th December, 2013 to Saturday 25th January, 2014
There are not many words required for this post, the photos say it all. But you know me, I’m sure I’ll find a lot of words. In the days leading up the my last hit of chemo, I had a lot of people asking me if I was excited. Excited probably wasn’t the right word. I was happy, relieved, even thankful, but I wasn’t excited. If I knew I could walk out feeling on top of the world and I absolutely knew it was the end, then I’m sure I would have been excited. But knowing that I would still be bed bound and feeling like crap for a few days and not knowing if it really was my last treatment for Hodgkin’s lymphoma EVER, meant that I couldn’t really be excited. I was however, a little bit excited about getting my PICC line removed and a little bit excited about the fact that I definitely would not have any chemo or any other form of cancer treatment in January. There I go, first paragraph and already so many words.
Since it was school holidays and my haematologist was also on holidays (and it was my LAST chemo), I requested an early appointment which would also mean an early finish. My appointment was for 8:30 am so Jenni picked me up at about 8:15 am. I walked down the corridor to the day infusion ward for what I hoped was the very last time as a cancer patient. The wall at the end was painted blue. It had been green every other time.
I arrived at the newly refurbished day infusion ward and was once again escorted to the naughty corner for my very last (hopefully) treatment. The renovations were good. There was more room and the colour scheme (blue instead of green) was a definite improvement. I was feeling OK that morning. I wasn’t nauseated and my appetite was OK (so definitely not anticipatory nausea for round 10). Blood was taken for a blood test and chemo was underway very quickly. My nurse asked me if we were changing my PICC line dressing that day and I promptly informed her that we weren’t as the PICC line was coming out as soon as that last drop of chemo had gone in!
I didn’t notice it at the time, but Jenni was acting a bit odd that morning. She told me she had to go to the shops to get some birthday cards. I didn’t think anything of it. When she returned, she sat down on her visitors chair and then she suddenly moved the chair. I asked her what she was doing and then looked to my right to see my chemo sister, Lisey, walk in. What a surprise! These two had been scheming this for some time. Lisey had travelled quite a distance to join me for my last chemo. She also visited some other friends but I’m happy to pretend it was all about me. Jenni missed taking a photo of the expression on my face when Lisey walked in, but this one was taken soon after.
I was then showered with gifts; flowers, a cardigan and pyjamas (which I would spend the next few days in) from ‘the girls’ and from Lisey, some chocolates, moisturiser and a T-shirt which she had been up all night inscribing (one for me and one for her). The presents also came with very thoughtful cards.
I was delivered the standard lunch of sandwiches and soup that day, which I decided to hold on to for my guests, so I could take photos of them eating it. My hot lunch, ordered by Jenni, came soon after, and they ate some of that too.
All the excitement made chemo go rather quickly. Before I knew it, this was displayed on the infusion pump that was pumping the chemo into me.
When the alarm went off to indicate that the last drop of chemo had gone in, Lisey pulled out party whistles and streamers. She had come well prepared.
The last drop of chemo had gone in, so it was time for the PICC line to be removed. Or was it? My nurse informed me that she had spoken to the nurse in charge and she said I needed to keep the PICC line in for another week. I would need to come back for a blood test to see if I needed more chemo. For a second I was a patient and I believed her (she was serious, this was not a joke) and my reaction was “What? No way!” Then I put my doctor hat on and thought about it. There is no blood test for lymphoma that tells you you need more chemo. My next test was a PET scan on 28th January and the results of that would determine if I needed any more treatment. I would not be having any more treatment in January so I was not keeping the PICC line in just in case I needed more treatment in a month. So, once again I put my foot down. I wasn’t having a bar of it. I politely (I think) but forcefully told the nurse that there was absolutely no reason for the PICC line to stay in so it would be coming out…..now! She then spoke with another nurse and told me she would take it out as long as I understood and accepted that I would need to be cannulated if I needed more treatment. Understood and accepted! Get it out!
I did find it kind of amusing that I got to be the annoying doctor as a patient one last time. These nurses had tried to delay my chemo due to neutropaenia and I wasn’t having that, and now they were trying to make me keep my PICC line in when it wasn’t necessary. I wasn’t having that either. I did spare a thought for the poor patients who just accepted everything they were told because they didn’t know better. So, the PICC line came out and it was a very simple procedure. It was simply pulled out. I expected a bit of bleeding and thought I’d need my arm bandaged to apply some pressure but there was not a drop of blood and a tiny dressing was put over the hole in my arm. My reptilian skin was very thankful to be exposed to some air.
The end of chemo and the removal of the PICC line was followed by a lot of fist pumping.
I then got changed into my new T-shirt and had some photos with my cancer sister.
I gathered my things and was about to leave when one of the nurses asked me if I would like the nurses to sing me a song. Of course I would! I don’t think you get this sort of special treatment in the public health system! (Make sure you click on the arrow to watch the video).
I said my good byes and made my way outside for one more cancer selfie with Lisey.
I then went to Dan Murphy’s and retuned with a couple of boxes of wine and some chocolates for the nurses. I hoped I never saw any of them in that day infusion ward again, (so yes, I walked down that corridor again) and I’m pretty sure the feeling was mutual!
So that was my last chemo session, for 2013 at least, hopefully for ever. It wasn’t quite what I expected. I wasn’t expecting to celebrate and I must say, in the TWELVE times I’d rocked up to have chemo, I hadn’t seen anybody celebrating a last chemo at all, and there must have been a few of them. It was actually almost fun. Weird. I think Lisey, having been in the ‘having my last chemo’ position herself, knew what needed to be done to make it memorable in a very pleasant kind of way. So thank you Lisey! And thank you Jenni for coming to nearly all of my twelve rounds of chemo with me. Bring on 2014!!
I felt pretty good for the rest of the day. I think I was on a high. I did a bit of running around and I felt OK. That night I started planning my life like I didn’t have cancer anymore. I booked a holiday to Bali, as did several other members of the family. I bloody hope I make it to Bali this time. I will make sure I do. I also booked a trip to New Zealand for a friends 40th. I knew I was taking a bit of a risk booking these holidays as I could potentially need more treatment but I think I just needed something to look forward to. If it all goes pear shaped, I will deal with it then.
The next day was New Years Eve and it was very quiet. I spent the evening in bed but I managed to stay awake until midnight watching the fireworks on TV so I didn’t feel like a complete loser. I think I needed to be awake to give 2013 a massive kiss goodbye (or kick up the behind goodbye) and give 2014 a very happy welcome! I even got to wake up the next day feeling like I had a hangover without going anywhere near alcohol. I was pretty tired for the rest of the week, more tired than I had been after previous rounds of chemo, so I just took it very easy and rested a lot.
13th January was a particularly nice day, as that would have been the day I would have my next round of chemo, if I was still having chemo, but I wasn’t. It seemed quite fitting that the next day, 14th January was my birthday, so I could celebrate that and the fact I didn’t have chemo the day before. It was just a mini celebration however, as until I have the PET scan, I don’t know if it’s the end.
I don’t know if it was chemo brain or fatigue or something else, but I could not decide what to do for my birthday – go out for tea or have friends and family over to my place for tea. I ended up deciding the day before, to go with having people over to my place as it was a forty something degree day so I thought my pool might come in handy, and it did. Fortunately, even with such short notice, the attendance was good. I drank champagne and made (or assembled) myself an ice cream cake. Former Fav Uncle Noof (the one who didn’t sign up for the walk because lawn bowls is more important than walking with his niece with cancer) was invited as I needed someone on the BBQ. There you go Uncle Noof, you got your blog mention!
The rest of the time, which could be called BPS (before PET scan), was pretty much spent taking it easy, enjoying time with my kids and enjoying the fact that I felt a bit better each day and there wasn’t another hit of chemo. I spent a couple of days in Phillip Island with my kids, sister and cousin, and their kids, and enjoyed school holiday activities with my kids such as picking strawberries, going to a farm and a dinosaur world. I even made it to the Australian Open one day.
Not to be outdone by my chemo sister Lisey,who travelled several hundred kilometres to be with my for my last round of chemo, I travelled a 700 km round trip with Ev to watch Lisey kick it in a triathlon. I must point out that my dear friend Ev drove all that way (except for the bit between my house to his) with me in the passenger seat chatting away. He did his fair share of chatting too, and I won’t mention his upset tummy. Lisey had completed this triathlon one year earlier, days after being diagnosed with breast cancer. In 2014, after 10 months of treatment, she did it again to say “Up yours cancer. I’m back!”
What toll has 12 rounds of chemo taken, almost four weeks later?
- I get tired easily and feel like I just have no reserve. The activities I have described above probably sound like I’m living a fairly normal life, but after most of those, I would come home for a nanna nap, or at least attempt to have a nanna nap (very difficult to do with children in the house) and I would be pretty exhausted the next day.
- The chemo brain is persisting. I got a phone bill the other day and I was in credit. Why is that? Because I paid the last bill twice!
- I have skin changes which I’ve described previously. Areas of brown discolouration. These are more evident to others now, as with the weather warming up I’m wearing T-shirts and singlets so they are exposed. Reactions have ranged from people thinking they are bruises or scratches to Cousin Sonya telling me she thought it was dirt and she had spent the whole day wanting to wipe it off.
- The peripheral neuropathy or ‘dysaesthesia’ in my hands is still there. It got a bit worse after my last chemo and even started affecting my feet. The burning pain became almost constant and there were things that were difficult or that I couldn’t do because if pain, like opening bottles. Things like that made me rather frustrated! I think it’s improving now, however.
- I have a pretty good covering of hair on my head now as I never went completely bald. I wear scarves less often now. I have progressed to sun hats, or sometimes I expose my head. My eyebrows thinned but I didn’t lose them completely. Same goes for my eyelashes. I got to the point of almost being able to count the lashes on my lower lids.
- I’ve finished up a few kilograms lighter than I started – now that’s a positive!
That’s just the physical toll. There’s also an emotional toll and a toll on those around me.
In the last week, an awesome young woman signed up to follow my blog and I have now signed up to follow hers. Her name is Kara and she has very recently been diagnosed with Hodgkin’s lymphoma. In fact, she had her first round of chemo on Friday. You can read her blog here. I am so glad she found my blog (and I subsequently found hers) which she tells me is informative and helpful. I hope I can continue to help her in the months ahead. When I started my adventure, I wasn’t able to find blogs written by people who had very recently gone through or were currently going through the treatment of Hodgkin’s lymphoma. I probably wasn’t looking hard enough as someone else has signed up to follow my blog who was diagnosed with Hodgkin’s lymphoma about a month before me, and was the same stage as me! (I think she also started her blog late, like me). She has recently had her post treatment PET scan and is in remission! You can read her blog here. I need to go back and read all of hers.
It is interesting to read these blogs written by people from other countries. Treatment appears to be much the same around the world but there is a difference in follow-up. The second blog I mentioned is written by someone from the UK. Over there, you don’t get a PET scan after 4 rounds of chemo to make sure it’s working. In America, after achieving remission, you get 6 monthly PET scans for a few years to make sure you’re still in remission, or if you’re not, to pick up a relapse early. My haematologist has already told me that is not the case here, which is why I think I might develop and intense itch every 6 months (assuming I achieve remission in the first place) so I can get a PET scan.
So, approximately four months after starting this blog, which was two months after this adventure began, I am finally up to date. Just in time for my post treatment PET scan on Tuesday. How do I feel about the PET scan? To be honest, I haven’t been giving it a whole lot of thought. In fact, I asked a school mum if her kids would like to have a sleep over at my place on Monday night or come over for a swim on Tuesday as it is going to be hot. She reminded me I had my PET scan on Tuesday so neither of those were a good idea.
Based on my PET scan after four rounds of chemo, which showed a good response, this one should be negative, but there are no guarantees. If it is negative, that is awesome. It means remission. Then I just have to hope it doesn’t come back. But I am prepared for a positive result too, as I know that is a possibility. I don’t really know what that will mean in terms of further treatment, probably a stem cell transplant, but I’m not thinking about that too much. I do know it will probably mean I can’t do the walk I have signed up, but not yet started training for, and the holidays I have booked might be problematic! I know everyone is counting on a negative result and I honestly think I will cope better with a positive result than my family and close friends. I think I’ll be the one reassuring them.
I texted my radiologist friend the other day, just to make sure he was lined up and ready to give me same day results. This little black duck is not waiting a week for those results. I let him know that I was prepared for a positive result, just so he wouldn’t feel like he was breaking devastating news to me if it is positive.
So, the blog posts will be up to date and live from now on. The next one will be on Tuesday with the results of my PET scan. Hopefully there won’t be too many more posts after that and my adventure will come to an end, the end of having cancer at least.
Well, true to form, I managed to write a lot of words in a post that apparently did not require many. 3284 to be exact! No wonder it took me so long to catch up.