I finally had bowel surgery on the 15th June and all went well, it took over 5 hours and there were a few complications, but all went to plan, they removed all the tumour and 8 lymph nodes. I was out of hospital within 5 days and flew back to Gisborne to recover.
Unfortunately, within the next week I had got an infection and was given antibiotics, it didn’t seem to work. To cut a very long story short I had a few A & E hospital visits and then a drain put in, but that didn’t work so I got air lifted to Auckland hospital to be back under my original surgical team.
I had 9 weeks with a drain and was having surgery every week for 5 weeks to have it changed and speed up the process. I finally got the drain out and hopefully that is the end of a rather challenging two months!
Also I have had ongoing shoulder issues, after a MRI and a consult with a Ortho doctor it seems my scapular tumour is bigger than initially thought. It is taking up about 2/3s of my scapular, still within the marrow, but causing the pain. I will get it looked at again after treatment and see if I need more surgery or if treatment will sort it. In the meantime I always have strong pain meds on standby..
The major change in my diagnosis came when the tumour they removed in surgery was tested and it turned out to be a neuroendocrine tumour (a rare type of cancer), this is very different to bowel cancer, even though it is still cancer it is treated differently. As you can imagine this was a massive shock but as it turns out it is a better cancer (if there is such a thing) as it is slower growing and I am told better behaved. It does make me question the 19 rounds of chemo that I have already endured, most likely it was not really necessary, but it is in the past and I cant change it, so not dwelling on it.
I have had a lot more tests and now know exactly what type of neuroendocrine tumour it is, further tests also showed that I have a few more tumours than originally thought, but they are tiny, the main ones left are in my liver, right scapular and a few ribs. Unfortunately the best treatment is targeted therapy which is not available in NZ. So I have to go to Melbourne for treatment (it’s called PRRT). This will cost around $35K for treatment and a further $5K for flights/accommodation etc. I still have $22K left in the medical fund pot, so only $18K short. It is the best treatment for this type of tumour and just unfortunate that NZ doesn’t offer it nor fund going to Melbourne. I have just been to Melbourne for a consult at the Peter Mac Cancer Centre and am starting treatment on the 22nd of September.
This treatment is every 6-8 weeks in Melbourne, I only have to be there for a few days and then back to NZ, I might have to have oral chemo like I did when I did radiation earlier this year. There shouldn’t be too many side effects, just fatigue, nausea and a bit weaker, but that is pretty standard for me know. I will do four rounds of this, so pretty much another 6-8 months of treatment. I then plan to take a break from the medical world and just try to build a normal life for a while, I am still told that I will never be cured, but hopefully they can reduce the size and growth of the remaining tumours, but I don’t really believe doctors so keeping positive and am sure I can still negotiate my way out of this haha.
Anyway I have a bit of a work to do to get my health back on track, still pretty weak from the last 2 months of issues, only can walk about 20 minutes and physically am rather useless, but I know I will bounce back and be back into yoga and long walks in no time.
There are no words to really describe the last 20 months, but I am glad I have some solid answers now and have a good treatment plan. I have been extremely fortunate to have such a supportive family, friends and community, without all your help I would be in a rather difficult, physical, financial and mental state. People have asked my family and friends about this page and wanting to still donate, so in light of my new medical adventure across the ditch I thought I would turn it back on for a while for anyone new that wanted to add to it. For those that have already donated I am forever grateful and you have made all my medical decisions possible, I now have the best treatment and medical team because I was able to fund it.
I spend a lot of time in Auckland now and hoping to start working part time over the next few months as I am needing a bit of mental stimulation! But will see how the first round of treatment goes before exploring my options.
If anyone wants to get in touch you can email me on jess.spence03@gmail.com
Thanks and will post more regular/shorter updates over the next few months x
