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Hello people, it’s got to the end of summer and I’ve been so busy over July and August that I’ve not had time to make much room for the blog. It’s been on my mind to update my followers though. So if you want a recap on my last post, please find it here. In the meantime, it’s a case of carrying on with chemotherapy for reasons I’ll explain below…
Update from Basingstoke’s Peritoneal Malignancy Institute (PMI)
In early August, Mr Bunny and I went on a trip to Basingstoke which involved that delightful car park of a motorway (*shudder; I get road rage just from being a passenger!)
We saw a consultant surgeon and the lead clinical specialist nurse who are involved in the Cytoreductive Surgery with Heated Intraperitoneal Chemotherapy wash (HIPEC). Firstly, I cannot emphasise enough what a mammoth operation this would have been. If you’re thinking this is going to drag on I’ll give you the too long didn’t read (TLDR) summary here: I’d be in theatre (10 hours at least) and recovery time in hospital (at least 3 weeks). This would be followed by 3-4 months recovery if things went well in the surgery. Lots of stripping away of various body parts, and a heated chemotherapy wash for my debulked peritoneum. Ugh!
Following the consultation, I took some time off work as psychologically I felt overwhelmed with all the information they bombarded me with. More to follow on that if you care to read it. I also had some holiday booked for the end of August. I agonised over the decision whether to have the surgery (which at the time of the consultation they were deeming was still feasible, based on my scans from May).
Is surgery still feasible?
I did have more recent scans prior to the consultation, at the end of July. Probably cutting it fine to get all the images checked by the radiologist and a report generated. I did inform the radiology department at Basingstoke they would need to request the scans. Only they never bothered to reply. So that was helpful. I told the consultant and nurse about the more recent scans, and showed them the email I had sent. The consultant seemed to know of one of the Drs I had emailed from the radiology dept.
Suffice to say there was a lot of delay while Addenbrookes and Basingstoke kept ringing me! Meanwhile I was trying to enjoy myself! Reiterating this conversation more than once was frustrating to say the least. Finally I got the hump and asked the oncology support nurse to kindly chase it up with their radiology department.
That did the trick at least! I spoke to my oncologist, to get his views on the surgery and whether the risks would be outweighed by potential benefit. I had already come to a general conclusion that it probably wasn’t worth it given how much they’d have to strip away.
The mother-of-all surgeries
There were a lot of question marks about the possibility of having my spleen and gall bladder removed. These might not be that major things to have removed in a non-immunocompromised person not on blood thinners. But alas I am both immunocompromised and on an anticoagulant. I would also need to stop all chemo / targeted treatment at least 8 weeks prior to surgery to minimise the risk of bleeding etc. I was concerned that would give the disease time to spread to other organs in my peritoneum. The lining of my peritoneum and omentum would definitely be stripped away, along with my uterus. There was speculation about the possibility of losing more bowel too. I don’t want to end up with any more ‘ostomies.’ An ileostomy is enough for me to handle.
I would also need a live vaccine against Pneumonia. This concerned me if my spleen needed to be removed, on account of the lowered immunity. The consultant also examined me and said I should see a gynae which scared me. Not what I wanted to hear when I was already feeling overwhelmed!
Confirming my thoughts
After seeing my oncologist (where he basically said he’d support me whatever I decided to do, but stated that my disease is incurable), I needed to let a lot of emotions out.
I’m grieving the version of myself I lost nearly a year ago when I had my emergency surgery. I’m going through an anger phase which I don’t like, but I have to go through the motions I suppose.
I ended up speaking with the Basingstoke consultant when I was on holiday in Lille, en France. His views based on my July scans were that the surgery was no longer feasible. They want to see shrinkage following further chemo and treatment. So I needed to bring the Avastin back online in my most recent round (number 18). That confirmed for me the Avastin was having an impact on maintaining a response. I’ve missed it from rounds 14-17 inclusive. which is from June.
So following that sucker punch to the guts, I’ve gone back to work! Little bunny meanwhile started the new school term. I have decided to drop down to 3 working days a week. I’ll probably keep the chemotherapy going on a fortnightly basis while I can sustain it without getting too tired.
I’ll wrap this post up for now as it’s a bit heavy. Next time I’ll write about more fun things from my summer of ‘doing all the things to live life to the full.’ Until then, stay safe and happy. <3
