I Was Being Wildly Optimistic

Feeling that something had gone right, that this treatment is within my ability to cope, gave me a much needed boost, but as has been the case throughout this process I hit a brick wall with a resounding crash. After the pump, was removed, later that day, I started to feel ill and the pain around the port increased to the point that none of the analgesia I had was relieving it. I returned to the clinic and saw the oncologist. She informed me that I had developed an infection in the tissues surrounding the port, I would have to be hospitalised for 5 days for IV antibiotics. Waves of disappointment engulfed me. She told me to go home and wait until a bed became available later that day but if I felt worse to go the the hospital ER.
I did feel worse later and I went to the ER, that was a big mistake I should have just waited at home, better to feel sick at home than to sit for 6 hours in a hospital ER. My doctor had phoned ahead but no beds and then they wouldn't let me leave so I was trapped in the appalling NSW public hopsital system.
Eventually I was found a bed on a surgical ward, a private room thankfully, and IV antibiotics started. Each 500ml bag of antibiotic infusion was followed by 500ml of saline to flush the line. The antibiotics made the veins ache, they had to change the cannula site 3 times due to the inflammation in the veins. The nursing staff and resident doctors were caring and professional, as is usually the case the underpaid health workers doing their best to hold the system together in the face of mismanagement by governments and hospital administrators.
My stay ,while somewhat sleepless, depressing and frustrating was uneventful but I could not bear to stay there for 5 days. On the 3rd day I pleaded with my doctor to allow me to go home on oral antibiotics. She relented and sent me home on a very high dose, I would put up with the stomach upset to sleep in my own bed and eat real food.
The experience gave me the opportunity to look around and really see the plight of people trapped in that system without resources, family or financial. It actually surprises me that the MOST disturbing factor in the experience was the truly dreadful food. I was fortunate enough to have family bring me healthy appetising food but the meals served to patients in public hospitals is absolutely shameful and has given me cause to fight.

First Chemo Cycle

I was terrified for days before my first Chemo session. I was nervous and teary and found it hard to talk to people. The clinic is a small, private oncology day centre, with recliners for 5 patients at a time. There was no waiting when I arrived, straight onto the recliner and a clear explanation given about the procedure. The specialist nurse felt for the port and was annoyed with the surgeons placement of it, The port is below the scar in my cleavage, making access less than easy . She had to feel through my skin for the shape of the port, ascertaining where the piercable membrane was. She showed me the L shaped needle and told me to take a deep breath, I felt a firm pushing on my skin, and then she was taping it down. I didn't even feel it go in. My relief was palpable.
I was given a small bag of saline to make sure it was going into the line, the first injection into the line was an anti nausea drug and then a bolus injection of the first chemo drug, followed by a bag of the second drug.
Again I felt nothing, no nausea no pain just a slight light-headedness. I was actually starting to feel elated and thought for the first time in weeks, I can do this, I really can cope. My husband, who had escorted me to the clinic, left to make business calls and I lay back and listened to my Ipod. All music I know well, quiet friends whispering comforting words into my ears. After 3 hours of treatment the 3rd lot of drugs was attached to the line. This was the pump that I was to go home with to have the rest of the chemo delivered over 48 hours. It was not at all what I expected, I was thinking a battery operated thing. It is a balloon within a bottle, about the size and weight of a small spring water bottle. It is placed inside a mesh bag with a drawstring and that is hung around the neck.
I stood to leave and looked in the mirror, I was extremely pale, a whiter shade of pale. I was light-headed and the bottle pump thing very annoying and visible, but still it was all easier than I had expected. One of my drugs has some very strange side effects and rule.
I can't eat seafood for the days I am receiving chemo, the drugs will react with it.
I can't eat or drink cold foods. No ice, ice cream , no refrigerated drinks, I can't even brush my teeth with cold water. If I drink anything cold my throat will spasm and and I will have trouble breathing.
I can't touch anything frozen, like foods from the freezer without oven mitts on, or bottles from the fridge I must use cotton gloves. I can't wash my hands in cold water. I can't walk on cold surfaces like floor tiles without shoes. The condition that will result in breaches of the rules is called neuropathy , a numbness and tingling in the hands and feet and a change in peripheral touch sensation , it may fade over time but is sometimes permanent.
I take 2 different anti nausea pills each morning for the chemo days. So the resulting no pain and no nausea and vomiting has given me a new lease of hope. I will have to lay around for 3 -4 days every fortnight watching DVDs , could be worse.

Tips:
My husband talked me into going for lunch after leaving the clinic, that was a mistake I really should have gone home to lay down, I was exhausted before I got home.

It is very difficult to pick stuff up off the floor without the possibility of wrecking the needle placement, don't try it. This morning I had to return to the clinic because it had partially dislodged and I was bleeding. So no heavy lifting or bending.

You can't shower for the days you have the pump in so may need help in and out of the bath till you get used to it if you are feeling a bit off kilter.

Any exercise while recieving the drugs. even up and down the stairs a few times has made me feel wonky.

They told me not to cook while I had the pump in, stay away from hot stoves and sharp knives.

Porta-Cath Insertion

I finally had the porta-cath inserted yesterday. I was to have prophylactic IV antibiotics before the operation. One gram of Vancomycin was added to a 500 ml bag of Normal Saline and the drip started. Within 5 minutes I felt like thousands of mosquitoes were biting my back, feeling like an intense itching and prickling, my face went flushed and a wave of "oh, this can't be good" went through my body and I felt like I was going to faint. I called the nurse, she saw me and the medical machine flew into action. She stopped the drip, pushed me into recovery which luckily was next door. There was, also fortuitously, an anaesthetist visiting a patient, so I was given adrenaline, which by the way, feels very weird as you are aware of it rushing through your body causing your heart to thump and makes you want to throw up.
After a bit of recovery time they decided to go ahead with the procedure. I woke to find myself back in recovery, and yes the surgeon was wrong about the post-op pain, I had an intense pain in my chest at the op site. They gave me digesic and told me that I should try and sleep. About 30 mins later, after the tablets had had no effect at all, an X-ray guy arrived to take an in-bed chest x-ray to check the positioning of the implant. He started to raise the back of the bed and I felt like someone had cut open my chest and shoved an implant into it, and threaded a tube up into a major vein, oh wait, they had.
I think it was a combination of severe pain, frustration at being so very immobilised, and the effects of anaesthetic, allergic reaction and the adrenalin shot, but anyway I had just had enough and started crying. The nurses sprang into action as carers and advocates. My anaesthetist was saying that the protocols called for digesic for pain relief and that that should be enough. While one nurse stayed with me making me concentrate on my breathing, another took the anaesthetist aside and talked to him. A few minutes later she was back with an injection of something for more effective pain relief.
So it is the next day and the pain is subsiding and I have been pondering the nature of the way pain is experienced. When I feel strong, pain is manageable, when I am exhausted or disappointed or feeling fragile, pain is less bearable. I think that doctors often don't see how very individual the need for pain relief is, not just from patient to patient, but also from one episode in a patent's history to another.
I am thinking the worst is over now. I have been dreading this foreign thing being implanted into my body, close to my heart. I start chemo next week and I can start to count down the treatments till this is over.
Oct 12th. I am adding this for people who stumble across my rantings when they are about to have a porta-cath in. A few days after and I am just needing panadol for the pain, it settled very quickly, a vitamin B6 seemed to have helped, getting rid of a bit of fluid. Don't be fobbed off about pain relief. Ask the surgeon and the anaesthetist at the first meeting with them, say you want to have adequate anlgesia in recovery and insist on having a script to take home even though you may not need it. Ask when you can shower after the proceedure and how long before you can lift things. I was given far too little information. I am glad I had this port in, the alternative, a pic line, would have been worse for me. Resistence is futile.