For the last few months I have really been struggling with pain. It was crippling at times and I spent a good few weeks barley able to do anything. Even the walk to the hospital was causing pain in my lower abdomen and pelvic region as well as my lower back.
We firstly tried an increase of my Oxicodone, which granted, did help a lot. But it didn’t dull the pain enough and I was having to take up to 100mg of break through Oxinorm. We then tried a few other meds which can help with the way the brain receives pain signals, changing it so the pain isn’t interrupted as intensely.
One of the meds gave me server nightmares and the other made me so drowsy and drugged up I lost days and was unable to function on a basic level. There was a lot of talk about going into hospice to help with getting on top of the pain.
Its the place I think of where people go to die. I feel like its an old persons place. Its definitely something I was extremely afraid of and was trying to avoid like the plague. sometimes the places you never want to be are the places you need to be the most.
During this time I watched a lot of TV and achieved little else.
A CT scan was done, it showed some growth but nothing substantial enough to explain the pain I was experiencing. This pain reach me to my core and made me sick with how bad it got at times.
Another oncology appointment and a bone scan was requested.
During this time alternative treatments were given a go. I started getting oncology massages once a week (thank you to Tess at Body Central for these! One of the only people who will touch me knowing I have cancer!).
Alongside this I tried a TENs machine from Nurse Maude. It was stuck to either side of the spine and set at a specific frequency. The electrical impulses flood the nervous system reducing its ability to transmit pain signals to the spinal cord and brain. I’m not sure now much this helped me, I also wasn’t very good at using it on a regular basis.
Also I received acupuncture to the ear. It is based on the idea that the ear is a micro system which reflects the entire body, is thought to help pain and other symptoms. I found this quite painful on the ear and actually struggled with that more than anything. I took the needles out after 36hours and couldn’t bring myself to do it again.
Out of these alternative treatments I found massage the most helpful and am now receiving them once a week.
While this was all happening the bone scan came back clear and left me frustrated and confused as to the level of pain I was still experiencing and the lack of evidence to back it up.
Was it all in my head? Did I need a pysch not a scan?!
The last ditch effort to find the cause was an MRI scan.
I actually had this 2 Fridays ago, 7 weeks after the CT was taken trying to solve this mystery.
I saw my oncologist last Tuesday.
The cancer has spread and progressed more than I ever thought it would have given what the CT had shown 7 weeks prior. It was crazy to see the blue arrows pointing at all the new tumors and growths in the peritoneal lining.
Although I knew from all the reading and research I have done this is now the disease progresses to actually be faced with is a different story. The tumor that had slightly grown in the CT scan showed much greater growth in the MRI and gave obvious cause in the increase in pain. It is pressing against muscles that have nerves running through them that is the reason for the increased pain I have been getting.
I have been urgently referred to a radio therapist where they will decide whether palliative radiotherapy may help reduce the pain.
This is massive. This could mean everyday trips to the hospital for weeks. The side effects are fatigue and depending on the area targeted, diarrhea, nausea and bladder infections.
As I’m coming up to my 1 year anniversary of my terminal diagnosis I’m so unsure what to do. When that’s up I’m half way through the best prognosis (4-24months) they gave me. Do I want to waste another Christmas, and very likely my last Christmas, being ill and tired and sick the whole time? Last year I was on chemo and wasn’t that well either. I’m unsure I want to do that again.
I also have a few other really big things happening in December which I don’t want to be sick from treatment for.
The radio therapist is going to be in for a bit of a grilling before I decide anything that’s for sure!
This blog is about not giving up when you’re gut tells you somethings not right. To not let things slide and to press for answers, whether that means more tests, scans, or a second opinion. You know your body better than anyone else. If you don’t feel right 99% of the time its not in your head and you are right that there is something more going on in your body than whats being shown. Fight for yourself, fight for answers and don’t stop until you feel satisfied.
Take care of you.
Until next time,