I'm back!!!

Time for an update! Just yesterday I had one of my 6 month checkups! I had major anxiety about this one, I had 100% convinced myself this thing that once invaded my life had returned. Rewind to about 3 weeks before when I booked in for my chest X-ray, I started feeling short of breath, this continued right up until I saw my oncologist. I believe I had a tumor in my chest and that I was going to get bad result. Turns out my stress and anxiety was for nothing and everything came back clear! People tell you to "not stress" or "it will be ok" but it's not that easy, I really wish it was. Don't get me wrong, for 5 months out of the last 6 I didn't stress, but it's just that few weeks before I see my oncologist that my mind starts playing crazy tricks on me. My heart rate and blood pressure were both high due to my anxiety. I did also mention to him that I had been short of breath, he said to contact him if it continues and he will organize a lung function test as one of the chemo drugs I was on can cause problems with the lungs. Here's hoping it's just anxiety related.

So I see him again in 6 months for what will hopefully be my last CT scan for a very long time! He has also requested I get a heart scan around the same time, just to make sure another one of the chemo drugs hasn't affected that. Nothing to worry about for this one, just a precautionary scan. This CT scan will also bring me to 4 years clear! I can't believe it's been nearly 4 years since I got the all clear and 5 years since I was diagnosed. In a funny way it feels like only yesterday I went through it all but at the same time feels like forever ago. Every now and then I will go back through and read my blog, it's almost like I'm reading someone else's story. It seems very surreal that I went though all this. My mind has shut it out, which is a good thing!

I'm still waiting to get my hip replacement. I see the orthopedic surgeon every year and not much changes so we keep putting it off which I'm ok with as I don't really want to have it anyway so the longer I can put it off the better. The pain doesn't impact on my life too much, I do walk with a sight limp but that's about it.

My biggest scare yet!

So i have just been through my biggest scare yet. I heard the words "You have possibly relapsed", it was words I had never wanted to hear, it was daunting, it was scary actually it was terrifying.

This is how it went: 

Saturday 30th January: I was sitting watching television and my hand landed on a lump in my neck, it was just under my ear, near my jaw. My initial reaction was fear. I waited a few days to see if it would go down or disappear it didn't.

Wednesday 3rd February: I called my Drs receptionist and she contacted my Oncologist, he requested I have a CT scan of the neck that day.

Friday 5th February: The day I got the results, they weren't what I wanted to hear. 5 nodes in my neck had all increased in size since my last CT, 2 of them had not been previously seen. 1 of those 2 was the one I could feel. He began to tell me that I had possibly relapsed, told me about what would happen if I had. Treatment would involve more chemotherapy, radiation and a stem cell transplant. He immediately booked me in for more scans - a PET and a CT of the abdomen. 

In between these 2 appointments I felt that the lumps in my neck had slightly decreased in size just by feel.

Friday 12th February: I had my PET scan and CT of the abdomen today. I saw my Oncologist the same day to get the results. Whilst sitting in the waiting room I had a voice mail message from the ENT clinic at the RAH saying they had a referral for me to see a specialist on the Monday. My heart sank, I figured this meant it was bad news and that my cancer had returned, especially since I had been booked in the next business day! He had taken everyone else in before me and then it was my turn. I was so nervous and felt sick. He began by telling me that he still didn't have a clear answer, I took this as a good sign. He went on to explain that the PET scan showed that the 2 new nodes were "lighting up" on the scan but the other 3 showed nothing. He said that the CT of my abdomen showed no new lumps. I told him that I believed that the lump I could feel had got smaller since I saw him last, he had a feel and agreed. Due to the fact that they didn't feel any bigger he was happy for me to make the decision as to wether I wanted to cancel the ENT appointment that he had made for me on the Monday and have another CT of the neck in 2 weeks. The ENT appointment had been booked for me to meet with a specialist to organise surgery to remove the node to test it for cancer. We all agreed to cancel it and rescan. 

Saturday 27th February: I arrived at Bensons Radiology to have my CT of the neck. As always there was a problem. They didn't have my forms to do the scan, they either hadn't been faxed over or they had misplaced them. Being a Saturday I knew it would be hard for them to organise some new ones, but they gave the RAH a call to see if they could. My oncologist wasn't working but they talked to another Dr that could send over the referral. When it came through it didn't have a Drs signature on it, so they needed to call them back to get another faxed through. The 2nd one came and they didn't write on it that it needed to be bulk billed and also had on there I was getting my neck, chest and abdomen scanned which was incorrect. In the end I ended up giving them my Oncologists mobile number so they could call him directly at home. He assured them it was just my neck to be scanned and told them to bulk bill it, they were happy with this. An hour after I was supposed to have my appointment I finally had my scan. For my last 2 neck CT's I have told them that I don't want the injection of contrast, my Oncologist is happy for me to do this providing they get clear enough pictures. 

I was due to get my results on Friday 11th March, but being the great Oncologist he is my Dr read the results early and texted me them on the 2nd of March to say that the CT showed all nodes to have slightly decreased in size and due to this he was happy to wait and rescan in 3 months time! 

And that brings me to today! I can't feel the lump at all anymore so hopefully it was just some infection my body was fighting. 

I will update when I have my next scan.

Xx

Quick Update

Just a quick update! 

Friday 4th September I saw my oncologist to get my results back from my scan. All nodes that had previously had cancer in them came back stable, however a new node has shown up at double the size to last years scan. This node is located in my right inguinal region. I previously had no cancer in this region. My oncologist asked me to get an ultrasound on it ASAP. I managed to get in somewhere on the following Monday 7th at 11am. By 12pm he had let me know the results, he said it looked reactive to something rather then lymphomatous, he was happy to watch and wait and get it re checked in 3 months (Dec). I guess if it is still there then they will biopsy it. 

All other blood work came back ok, except my vitamin d was low... again! I will see my oncologist again December 4th! Will update more after that.

xx

Scanxiety...

I can't believe its been a year since I had my last CT scan and nearly 2 years since I found out I was in remission. 

I despise CT scans so so much! The whole scan takes only 5-10 minutes but I still hate them. I have to fast for 2 hours before my scan, which normally means no breakfast as I try and get a 9am appointment. Instead I get to drink the Barium Sulfate drink. It actually doesn't taste that bad. It looks like milk but certainly doesn't taste like it. I have to drink 1 cup every 20 minutes over an hour. Once finished I get taken in for the scan. I lie down in the CT scanner, get a cannula put in and a drip connected. They do a few test runs and get the scanner lined up. Once they are happy with the position they inject the first lot of dye. This is the part that I hate. It gives you a warm flush that you can feel throughout your whole body and it makes you feel like you have peed yourself (true fact)! Once that scan is finished they administer more dye to scan my neck. Then the scan is over! I have to hang around for another 10 minutes to make sure I don't have a reaction to the dye and then I am good to go.

Breakfast 

The delicious liquid

This brings me to today.. I now have to wait until this Friday to get the results back from the scan. It feels like forever away. My anxiety is at an all time high.

Below is a quote that I love and helps me through the harder times. 

I will be back to update at the end of the week. My blog is still getting hits so I presume there are still a few of you that read it.

xxx

First 2015 update

Would you believe it's been 9 months since I last posted an update? I have come here many times to post one but haven't had a lot to write about, today I do however have something to fill you in on! 

Friday 10th July I was driving home from work and felt a lump in my left elbow crease, like anyone else who has been through something similar to me, I immediately began to panic. As soon as I got home I started googling to see if I could figure out what it was, this time Google didn't help me. I stressed about it over the weekend. Tuesday I mentioned it to the Pharmacist at work and he told me to book in with my dr ASAP as with my history one can never be too cautious.

I called my GP but could not get an appointment for 2 weeks, I knew I couldn't wait that long so I called and made an appointment with my oncologist for that Friday (17th July). Friday morning came and I felt so incredibly sick with stress that I was making myself vomit. I had convinced myself that I now had a secondary cancer. 

1:20pm I arrived at the hospital, I had to wait about 20 minutes to see my oncologist. He had another oncologist with him as it was a "slow day" in the Youth Cancer Clinic. I explained what I had felt and then they both had a feel. Their suspicions were either a blood clot from the PICC line I had in that arm or an inflamed lymphnode. If it was a lymphnode it would need to be removed and biopsied ASAP. He also mentioned that he had never heard of anyone getting cancer in their elbow after having Hodgkins and that it would be incredibly rare if it was. 

They checked me out to see if there were any other lumps they could feel but they couldn't. My blood results also didn't show anything suspicious. It was recommended I have an ultrasound to see what was going on. 

After a few calls they managed to get me in somewhere that same day. 

4:00pm I went and had my ultrasound. The girl that was doing it stopped half way through and said she wanted to get the dr to have a look. I was now starting to worry!! They both came back and the dr was looking at it and said what she thought it was. I asked her if she thought it was cancer and she said no. She was pretty certain it was a ganglion cyst, which are rare on the elbow, they normally occur in the wrist. They normally just leave them if they aren't causing any problems and sometimes they can go away by themselves. 

In other news, my hair is growing back nicely! I have finally got it to a style and length that I am happy with. 

Relay For Life 2015

In May I participated in my 3rd Cancer Council Relay For Life. My team and I raised just over $22,000, this brings our total to over $45,000 in 3 years! 

Quinzi's Sisters From Other Misters Relay For Life Team

I have my next checkup CT scan at the end of August. This will take me to the 2 years in remission. We are pretty confident that this scan wont show anything bad. This will hopefully be my last CT scan for a very long time.

Until then xx

Scans, Scans & More Scans!

So it seems I always say ill be back to update but then don't come back for weeks.. oops!! Sorry! 

5th September - I am happy to sat that my CT scan came back all clear! This marks 1 year of being Cancer free! Woohoo! He was happy with everything except my vitamin d level which is still a little low, so I have uped my dose. I see him again in December with another CT scheduled for March 2015. We spoke about the fact my GP thought I had AVN, he said it is very common in patients that have been treated for blood cancer. 

Avascular necrosis or AVN - is the death of bone tissue due to a lack of blood supply. Also called osteonecrosis, avascular necrosis can lead to tiny breaks in the bone and the bone's eventual collapse. 

11th September - I got in pretty fast to see the Orthopaedic surgeon, which surprised me. I had to have another xray on my hip before my appointment with the surgeon. In the appointment he showed me on the X-rays that the bone is starting to chip away and also has quite a large crack in it! Explains why it's causing a lot of pain. He requested an MRI and then said we would make a decision based on those results. I was rebooked to see him on the 23rd October. 

19th September - I was booked in to have a gated blood pool scan (heart scan). My oncologist requested this because the chemotherapy I had has a high risk of damaging the heart.

This is how they do it:    

• The “in vivtro” method: a cannula or thin plastic tube is inserted into a vein in your arm. The medication that prepares the blood for labelling (stannous pyrophosphate) is then administered via this tubing. About 15 to 20 minutes later about 10 ml of blood is removed through this tubing. The blood is then labelled in the laboratory. About 10 minutes later the patient’s labelled blood is injected back through the same tubing.

The scan it self only takes about 10 minutes. I will get the results back of this scan with my next oncologist appointment in December. I presume its all good because if anything came up wrong I think they would have called my by now!

25th September - I had my first ever MRI, something I was terrified of! I took a pre med of lorazepam to relax me which helped. I was also lucky as it was only my hip that needed scanning I was allowed to go feet first, so the whole time if I tilted my head back slightly I could still see the roof which was good! Having headphones and being able to listen to music also definitely helps. I get the results from this on the 23rd October. 

22nd October - I met with the Orthopaedic Surgeon to get the results of the MRI and make a decision as to where we go from here. He pretty much repeated what he said at my last appointment. He gave me 2 options. Option 1 - Wait and let it take its course until the pain is too much and then go in for a hip replacement or Option 2, do an experimental operation by trying to save the hip bone. This is only experimental surgery so they aren't sure if it would work or not, if it doesn't it will bring on the need to have the hip replacement sooner. So naturally I said I would wait. He mentioned that sooner rather then later the joint will develop arthritis and when it gets to this stage thats when I need to go back and see him and they will do the hip replacement. So at this stage I am booked in to see him again in 1 years time, if the pain gets too much I am too go and see him sooner. I am limited to what I can do, simple things like putting on socks & shoes hurts, sitting down hurts and walking up and down stairs hurts! 

So aside from the AVN I feel good! The pill has made the hot flushes from the menopause go away! I have increased my hours at work to 30+ in the last few weeks, so my body is still getting used to early mornings and long working days. 

xxx

My life is never dull!

I haven't had a lot to update on lately, which is a good thing I guess. 

In my last entry I mentioned that I had hurt my hip/groin, this is still hurting. I saw my regular GP about it and he requested I have an x-ray and ultrasound done on it. The results came back saying there was a small amount of fluid on the joint but nothing else. He then asked me to get a CT scan done. I already had a CT scan booked for the 16th of August for my "cancer check up" so asked if I could just add it on to that and he was fine with that. I arrived for my CT scan and told the receptionist I had the flu with a possible chest infection, the receptionist spoke with the radiographer and she said they would prefer not to do the "cancer" CT that day as they would like my chest to be clear as to not cause any panic if something showed up. They did my hip CT though, if only all my CT scans were that easy! No drink and no injection of the dye! I rescheduled my other CT for 2 weeks time, which is tomorrow. I went and saw a GP and he prescribed antibiotics. I took the week off work to try and fully recover so I would be well enough to have my scan.

I hadn't had a chance to get into my GP to get the results back from my scan as I had been sick and then he was booked out. I guess he got sick of waiting for me as he called me with the results today. He said that there is no blood flow to my hip joint and that he suspects I have something called Avascular Necrosis. He needs to put me onto a specialist and told me to prepare myself that I will most likely need a hip replacement. Not something you want to hear at 27! Now i just wait until I can get into the specialist to see what they say. So now that is 3 things that have gone wrong, Cancer, Menopause and now this! Surely that is it? Not sure how much more I can take!

Speaking of menopause! I had my follow up appointment with my Gynaecologist  on the 5th of August. I got the results back from my bone density scan and funnily enough only 9% of people have stronger hips then me! My spine is also good. I had forgot to get my blood clot test done until the day before I saw her so she hadn't got those results back when I saw her. She told me to send her a text the following week and she would let me know them. She gave me a prescription for the pill and said if the results came back clear I could start taking it. As I was sick in bed with the flu I forgot to message her, so did it the following week. She got back to me and said that the blood tests results were all clear and to start taking the pill. I am going to start tomorrow night, it was easier to start the packet on the right day otherwise it would all get muddled up.  I am a little nervous about taking it due to the risk of it causing blood clots, but I guess they did the test and it came back clear so I should be ok. 

That brings me to today. I have my CT scan tomorrow morning and get the results back on the 5th September. I really really hope it comes back clear!! I will update when I get them back! xx