It’s so hard to believe that my last post was on 31st August. So much has happenend and so much has changed in those 5 weeks and I’m finally at a place now where I am ready to share with you all. Make sure you’re comfortable, it’s a long post.
On 10th September, I finished the third round of radiotherapy, which was targeted to T2-T3 (upper spine), T10-L4 (lower spine) and in front of the kidney. This treatment knocked me around a bit more than the previous ones. All my side effects were quite delayed with this treatment and made eating and drinking especially difficult for a number of weeks. As the side effects subsided, I was then faced with a loss of appetite, which is still with me today. I guess this is just a sign that the disease is active and at some point it was going to happen.
On 19th September, I was back at the hospital to see my Radiation Oncologist, as I had been experiencing bad headaches daily. Mind you, this is only 9 days after the last treatment has finished and I’m really not feeling very flash. My doctor wants to do a scan of my brain and my skull. I jokingly comment that I hope they find something inside the skull!! 🙂 Two days later the results are back and there is a tumour the size and thickness of a 20 cent piece on the left side of my skull, which is growing between the outer and inner bone of the skull strucutre. We talk about treatment, which again would be targeted radiotherapy to the left side of the head. Geez, I’m going to be glowing for sure with all this radiation inside of me! Then my doctor asks if I would think about having another test done. I said it depends on what they are hoping to find. He wants me to have a full body bone scan because his theory is that now the cancer has gone back to the bone (ie, it’s now in the skull), there is likely to be more tumours in my other bones. I’m happy to do this because it means they are actually being a little more proactive, rather than waiting for me to present with symptons and then commence treatment.
On Monday 24th September, I had the bone scan. This involved having a die injected into my vein, then I had come back 2.5 hours later and have the scanm, which was pretty straightforward – lay on a bed completely still while they scan from my toes to my skull.
On Thursday 27th September the results are in so Chris and I head off to see the doctor. He explains to us that there are quite a number of “hot spots”, which most likely are tumours. The only other explanation for them is arthritis and after he showed me where they were we knew it couldn’t be arthritis as I have no pain in those areas. So there is activity in the skull, which I already knew, pelvis, ribs, thoracic (upper spine), lumbar spine and left thigh bone, just above the knee. It’s scary to think how active and quickly this disease is spreading, it’s no wonder I feel bloody awful!! My doctor then explained to us another form of radiotherapy, which is particularly good for people with metastatic bone cancer. It’s an internal form of treatment, which involves a high dose radioactive drug given into a vein. The drug spreads throughout the skeleton and is to go to the areas where there is disease and kill it off. There will be a time of isolation afterwards, as I will be highly radioactive but just how long, we don’t know until we meet with the specialist tomorrow. The other good thing about this treatment is that it can be repeated in 3 to 6 months if necessary. We need to travel down to Newcastle tomorrow to see the specialist at the Calvary Mater Hospital and that’s where the treatment would take place as well – it’s not done in Port Macquarie.
That pretty much covers all the boring medical stuff…..
In the last few weeks we’ve been very fortunate to have had lots of out of the region visitors either staying or popping in for a catch up. Thanks to my Uncle & Aunt (Kevin & Marjorie) for visiting. Chris got the opportunity to play a round of golf and didn’t he feel it the next day! I’m glad you guys got to enjoy some yummy desserts at the Rivermark Cafe, while I sat on watching…..(this was the start of my loss of appetite). Thanks to Sandra, David and Hayley, we really enjoyed having you here, it was lovely to catch up and I also learnt that Noah now likes Honey King Prawns!! Thanks to Sue, Kellie and Cheryl for the girly weekend. I really enjoyed your company but geez, it took me a few days to recover. Thanks to Jannah, Sue and Ray for stopping by for lunch, in between destinations. Again, so great to catch up and Jannah, you finally got to meet Noah, even if only briefly (Noah was very caught up with his little girlfriend that lives across the road). Thanks to my Mum and Dad who are staying with us at the moment. They also brought along my little nephew Alex and it’s always nice to see the boys playing together – they really do have a lovely little relationship, despite the fact they don’t get to see each other very often.
I also want to thank our local friends who continue to support us by dropping off beautiful meals. The freezer has never looked so healthy!
Chris and I made the decision for him to go from full time to casual work with the Good Guys. He now works only one day a week, usually a Wednesday and he applied to become my full time carer, which was granted. I applied for a Disability Support Pension, which was also granted so with this money from Centrelink it means that we’re able to continue living where we are. Since this change back in September you’ll be glad to know that we haven’t killed each other and that I’m so very grateful to have him at home with me, as each day I seem to be a little more weaker than the last. It’s also been very beneficial for Chris and Noah’s relationship with Chris not so stressed and having a lot more time to spend with Noah.
I guess you’re wondering how my emotional wellbeing is. I’ve returned to regular meditation, which makes a huge difference. I always feel relaxed, uplifted, positive and that I can take on the world at the end of a session. There have been a lot of tears shed over the past month but I’m a firm believer that that is also good therapy. The thing that I really struggle with is the physical changes to my body, that’s what really seems to make it real for me. For the last 5 weeks I’ve struggled with the side effects of radiotherapy, a general feeling of unwellness, increased weakness in the legs and loss of appetite. I have come to realise that if I need help, I need to ask for it and accept it. If I can’t do something anymore, like physically pick up Noah for a cuddle, we just need to find another way – cuddles on the lounge are even better :). It’s extremely frustrating to lose some of your independence but I am getting better at it and I’m getting a lot better at asking for help and accepting help when it is offered.
Finally a big thank you to the girls who came along to High Tea on Saturday. We had such a great afternoon drinking champagne, eating lots of little sweet treats and enjoying lots of giggles (I think the champagne probably helped with that!). Thanks, Fi, Cristeen, Vicki, Kay, Helga, Melzey, Anna and Mum.
I’m going to leave you with this quote “When I get sad, I stop being sad and be awesome instead!”
Love and best wishes to you all.