June 2024
07 - Fri: Diagnosis revealed. My breast surgeon (who has removed a suspicious lump a year prior which ended up being PASH tissue) phones me and tells me that I have triple negative breast cancer and I can not go on my early July two week trip to Europe as preoperative chemo needs to start straight away. OMG! [Background: I have had my breasts monitored on an annual basis for approximately 6 years, as I have dense breast tissue that can make sonographers nervous (lots of stuff happening on the images), lots of cysts that come and go and dense tissue is a known risk factor for developing cancer... No cancer in the family though!]
08 - Sat - 13 Thu: Appointments being scheduled right left and centre in the background. Breast surgeon refers me to a medical oncologist who will oversee my chemo and immunotherapy drug regime... Me googling lots of stuff and going a bit insane till I know what the treatment is going to look like. I like plans.
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| Before treatment (10 June) |
14 - Fri: PET scan done. They insert some radioactive stuff into your system that is meant to be absorbed by rapidly multiplying cells (a characteristic of cancer cells) within an hour or so and then they scan you. This scan is performed to pinpoint the cancer and whether it has spread or not.
17 - Mon: Insertion of clip. This appointment is performed under local anesthetic and with a similar setup to that of biopsies, it's aim is to insert a titanium marker into the breast in order to mark the cancer. As I'm going to be getting chemo before surgery, it is hopeful that the cancer is mostly gone when the surgeon is going to remove it post chemo. The titanium will show her where to cut.
18 - Tue: I meet my medical oncologist and receive my treatment plan. Six months of chemo (weekly for the first 3 months then three weekly) and immunotherapy (three weekly), followed by surgery, followed by a further 6 months of immunotherapy (three weekly).
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| My treatment plan for the next 12 months |
19 - Wed: I meet my breast surgeon again, in person this time. We talk about options. I ask her to do a double mastectomy in January. She says there are several options and we can keep reviewing our choices till then.
19 - Wed: I meet my CNC oncology nurse who does a 2 hr education session with me explaining medications and side effects and what to do when experiencing side effects... I walk away in fear of developing fevers and infections as these are now not a good thing.
19 - Wed: baseline blood test done ahead of Friday's first chemo treatment.
20 - Thu: I meet the surgeon who is going to be inserting a Power port into my chest for the administration of the chemo and immunotherapy. Apparently this is required as the chemo completely ruins your veins, makes them hard and makes future treatments difficult.
21 - Fri: I start my first immunotherapy and chemotherapy infusion, 4.5 hours in the chair, hooked up to a bag containing products, some that I can taste, most not.
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| First chemo and immunotherapy treatment |
23 - Mon: Power port insertion under sedation. Man this is bloody uncomfortable and painful when the local wears off. Drank 1/2 a bottle of gin to cope with the pain that night. Gin and Panadol. Hospital discharged me with nothing else, nothing stronger.
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| Before port insertion |
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| After port insertion |
24 - Tue: I text my oncology nurse in the afternoon asking for pain medication as my recovery from the port insertion is really not going well. I get a script emailed to me late that night. It was tool late to get it filled. I did have some expired Endone in my bedside table from and old toe operation back in 2015. That got me through the night until I filled my new Endone script the next day.
25 - Wed: my weekly blood test which needs to be done two days ahead of the next chemo infusion in order for the meds to be tailored to what ever all my cell counts are at.
27 - Fri: chemo only infusion this Friday, 3 hrs in the chair, this time via my new fabulous port that still hurts like a bitch.
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| Second chemo infusion, first one via my new port |
02 - Tue: Appointment with my medical oncologist. These are roughly every two weeks perhaps fading to three weekly appointments too. With a seamstress tape measure she palpates the cancer lump and measures it. She notices that the lymph nodes under my arm near the breast cancer are softer and believes that the cancer lump is softening too. (mmmmm... interesting that at this point an assessment is made using subjective measures of touch, but reassured that she has my weekly blood results to further inform the plan for cure)
03 - Wed: Had my weekly blood test done again, didn't have to wait too long this time.
05 - Fri: Chemo drugs being inserted into the port again, 3 hr session in the chair, and this sums up the end of my first cycle of 3 weeks of chemo. 1 down, 7 to go.
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| Third chemo infusion, this time neatly via port. Bandages come off, scar has healed. |
07 - Sun: First shower in two weeks without needing to keep the dressing dry. Such a nice shower 😍
(I'm not sure I will ever get used to having this freaky foreign lump uncomfortable and creepy
port in my chest visibly sitting under my skin. This stuff makes my skin crawl!!!)
10 - Wed: Weekly bloodtest done. Gave my right arm for the first time. Left is beginning to look a bit used from previous weeks.
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| Spoilt by my Aussie TNM FebFam💖 |
11 - Thu: Blood test shows chemo is affecting my liver function and white blood cell count.
12 - Fri: Start of cycle 2 week 1: Infusion consist of usual pre-drugs, the two weekly chemo drugs and the three weekly immunotherapy bag. It was a longer appointment than usual 4.5 hrs vs the shorter 3 hr infusion sessions on the other Fridays. I was accompanied by a great friend who I hadn't seen in ages and had a lovely time catching up. She let me completely forget we were at an infusion centre, I felt like I had the best coffee catch up in ages. It was fun!
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| Fourth infusion session (start of cycle 2) |
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| Received these gorgeous tulips from my parents. :-) |
15 - Mon: I contact my oncology nurse to report the Friday event. Nurse was not impressed with me. Told me off for not going to ED as soon as I saw my temp going above 38C. She told me off so badly and stressed that fevers can be life-threatening in chemo patients. I would like to know the WHYs! I would have so much more respect for information and instructions if I could understand the rational, reasoning, the science or the severity. I hope that my oncologist can explain all this to me tomorrow so that I don't ignore a fever again and try to get out of going to the Emergency Department which sounds like a huge long wait and bother (to me at the moment). What actually happens at the ED? Do chemo patients get seen straight away? Or do I grab a number and wait with everyone else and risk picking up a virus as its winter time here in Oz and the flu and COVID season is awful!
My hair is really beginning to fall out quickly now. I suspected that it was beginning yesterday. Today's amounts are alarmingly more than yesterday. It may only be days before it is all gone. I have asked a very good friend to shave my head on Wednesday, as I'm shedding hair much faster than my dogs do and it is super freaky and itchy! It also happens to be a very windy day here in Sydney and I'm paranoid this strong wind is taking my hairs away too.😂 My step kids are visiting tomorrow for a movie night pizza sleep over and I don't want to alarm them with baldness, so fingers crossed most of it stays in till the Wednesday bald cut. 👍
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| Me running my fingers through my hair and laying it down on my white desk for contrast. (This was only three passes. Timing Cycle 2 Day 4.) |
16 - Tue: Oncologist checkup visit - this scheduled visit was scrapped. After walking the dogs in the mid morning with my friend, we were having a cup of tea and I developed a new fever. It wasn't as high as last time but creeping up rapidly. I double checked what to do with my Oncology Nurse and she advised to go straight to the Emergency Department (ED) and she would call it in so that they know that I'm on my way. Kindly my friend drove me to the ED after we let the dogs out for their business and locked them up snuggly in their crates.
In ED is was triaged quickly as a category 2 and placed in a resus bay where I stripped into a hospital gown, they accessed my Power port for blood samples and started me on IV antibiotics and saline. Swabs taken to test for influenza and COVID, urine test, chest Xray, ..... blood pressure and intermittent temperature readings.... I was in hospital for about 4 hours when they let me go on the basis of me having a urine infection and my white blood cell count being fine enough for me to take normal oral antibiotics at home. During these 4 hours my other good friend drove my dogs to a kennel for a few days till my husband returns from Norway (I sadly cut short his three week stay down to a one week stay - And I'm the one who encouraged to go to Norway in the first place because I was so "fine" during cycle 1.... Poor man. I'll make it up to him 😘).
17 - Wed: I have my blood test done and my friends come over for lunch (made me the lunch) and to shave my head as hair is falling out at an alarming rate now.
19 - Fri: A good friend from Mother's group picks me up and we go for my fifth infusion. Everything goes well without a hitch. I feel fine and have a relaxing afternoon.
😷
In the evening I enjoy a chicken soup prepared by another mate, watch a little TV and then begin to feel unwell. This consisted of increasing pain in my legs and my body temperature starting to increasing again. Being pretty exhausted I head to bed.
20 - Sat: I wake up at 1:20 AM the Saturday with a high 38.5C to 39.3C depending on the device I was using (forehead vs inner ear thermometers). I got dressed ordered an Uber and was in ED again by 1:40 AM having the same lot of tests done again as Tuesday along with additional viral testing. This time my blood pressure was on the low side and I had a full body rash again, as well as a severe pain in buttock, thighs and legs (aka TAPS).
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| In ED, again, hooked up to monitors and Power port accessed to give IV antibiotics followed by IV fluids to get my blood pressure back up. |
I was admitted to the oncology ward before lunch, had lunch in my nice quiet room and then was given two options.
Option A was to go home with antibiotics with the permission to take panadol were the fever to return over the weekend, so basically permission to manage any fever myself, or Option B was to stay overnight so that they can monitor me in hospital. I chose option A. I was released around 2:15 PM from the oncology ward and my friend picked me up and drove me home. What a day! Few hours later my husband is back home too, safe and sound from Norway, travelling during the Global IT Outage without any issues. Phew!
23 - Tue: My oncologist calls me with the extensive results concluding that my origin of fevers is inconclusive, there are no viral and no bacterial infections. I am given permission to manage any future fevers from the chemo infusion day with Panadol across the weekend, instead of going to ED as my white blood cell count is fine. That is a huge relief.
23 - Tue - 25 Thu: I'm feeling pretty good and have been sleeping well and going on my 1 hour long morning walks with the dogs before breakfast.
26 - Fri: My usual chemo appointment went well. It was cycle 2 day 15 where I received both chemo drugs.
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| Genesis Care infusion centre |
I was home by 1pm. Feeling fine but a bit tired I had fun taking some selfies of my new shaved head. I like my head. 😁
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| Messing around with the new look. :-) |
At 5pm the severe pain in buttocks, thighs and legs kick in. Slightly before that the area under my armpits feel a bit sore. My mouth has been changing and I can no longer tolerate hot spicy food. The chili on Tuesday's pizza set my mouth on fire, I would usually love them. I couldn't eat more than one piece. Anyway back to today....after dinner around 8pm I start developing a fever. I take Panadol (paracetamol) and Endone (oxycodone), the former for the fever and the latter for the pains in my buttocks and lower limbs.
27 - Sat: At 4am I wake up with high fever and take a further couple Panadol and another Endone. This helps lower the fever a bit. I have an early breakfast around 7:30 am so that I can take my steroid. The pain in legs is gone by early morning but the fever remains and I take another couple of Panadol at 10am. I get out of bed around noon and feel much better although still a bit fried and tired from the long night. Oh - I forgot to say that I have been itchy that whole entire time too so I take a antihistamine around 1pm. I'm guessing the fever, pain and itchiness is going to be a weekly event, a reaction to the Friday infusions.😔 Can I assume that this is going to be my new NORMAL?
30 - Tue: I meet my oncologist for the first time in about a month. I recount what has been happening in terms of fevers, pain and itchiness 5-8hrs following infusions over the last three weeks. Oncologist is really puzzled as I'm the first patient to have these kinds of reactions following infusion. In case the pattern of reactions continue following infusions we put a plan together to deal with the fever and pain. I'm permitted to take Endone and Ibuprofen when the pain (TAPS) start and Panadol when the fever begins to creep up. In addition to that I can also take a Restavit (antihistamine based sleeping pill) which will help with the itchiness. I complain about how agitated and aggressive the steroids make me following the infusion (this lasts across the Fridays, Saturdays and Sundays). The oncologist recommends that I only take 1/2 of my oral steroid on the Saturday morning and perhaps none on the Sunday, which is a reduction from 1 oral steroid on Saturday and Sunday mornings (the Friday dose is part of the IV premeds and will remain unchanged). The point of the steroids are to keep me from being nauseous and vomiting, luckily I have not come across these symptoms/side effects at all. So maybe I can have fewer steroids.... We will try to find a good balance.
31 - Wed: Weekly blood test done - bloods are fine - beginning to show slight anemia... Fingers crossed Friday goes well.
August 2024
02 - Fri: Start of cycle 3 day 1, this is the day I get the immunotherapy and the two weekly chemo drugs. It's an early appointment at 8:15 and I walk back out of the building at 12:20 when it is all done.
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| Cycle 3 Day 1 |
We hop in the car and drive down to our bush block in Cooma which is about 4.5 hours south of Sydney. The pain in the buttocks and legs comes on earlier only about 2 hrs into the trip. We pull over and it's time to take my first Endone and Ibuprofen, that kicks in nicely - obviously I'm not the one that's driving. The fever kicks in earlier than last week too about 2 hours after the pain starts... so I take Panadol for that. We arrive and have a nice early dinner at which point the pain is coming back and I take more ibuprofen and Endone, then the fever flares up again and I take more Panadol before bed and also 1/2 a Restavit, wake with more pain and take another Endone and more Ibuprofen...in the middle of the night... I'm resting, uncomfortable and not sleeping.
03 - Sat: I take my morning steroid. Pain has gone so no more Endone or Ibuprofen on the Saturday apart from intermittent Panadol for the fever that still keeps dancing around me. I fell asleep on the couch on Saturday afternoon. That's a first for me, I never used to nap during the day. I continue to manage the fever into the evening and take the other 1/2 of Restavit due to having really itchy feet and hands. Again, I'm resting, uncomfortable and not sleeping.
04 - Sun: I wake with a bit more energy, only have 1/2 a steroid and go for a morning walk with the dogs to the lookout and back. Wow - the effort it took for my body to walk back to the house was insane. I cried when I reached the front door, just like I did when I completed one of my first half marathons. It was a lot of effort and took a lot out of me. The fever, only a low grade fever this time came back in the late afternoon and didn't need Panadol. During this weekend I really notice that my energy has decreased significantly and my mouth really hurts. I also get nose bleeds when I blow my nose but that does not bother me. My mouth is sore and very uncomfortable. It hurts to speak, eat, drink, swallow. It dries out quickly making it very uncomfortable. I chew gum which helps a little but gum makes me feel Yukie too. My mouth is awful. Fell asleep sitting in my chair trying to read. This treatment is truly being felt and I'm only 1/4 into the six months. Oh and I'm petrified of not being able to poo - but thankfully I can sort of manage it with Coloxyl and prunes (Saturday was iffy, Sunday a bit better and Monday fine, phew!😊) Sleep sucked again. My watch says that I don't get anymore deep sleep and fewer REMs.
07 - Wed: Blood test - had these done in Cooma. For some reason the doctors never get these results despite the lab being part of the same parent company. But I get the results instead so just putting a copy here. Note that when I started back in June there were no red highs and no red lows in my reports. Chemo is definitely taking effect on my body.
09 - Fri: Infusion C3D8 - on my way to the infusion centre this morning I was crying like a little child that doesn't want to go to the dentist because they are scared. (I'm not actually scared of dentists and I have never feared them. I like dentists.) I'm fearful of having another bad reaction to the chemo and for that reaction to be worse than that of the previous four Fridays. I must admit that I have not felt any "normal' moments in the last week. That feeling of "normal" is gone now. I am so tired a lot of the time, my walks are shorter, one day I had a nap before lunch, and twice I fell asleep in the living room in my seat on the couch. I sometimes don't feel confident enough to drive, to be part of traffic. I constantly have a dull ache in my leg and arm bones (it sort of feels like growing pains if you had them as a child), my mouth is sore and I have nose bleeds that block my nose making me more of a mouth breather which in turn dries my mouth out even more... anyway here is the weekly photo.
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| Weekly infusion |
Within one hour of arriving home the horrible pain in joints and muscles of my buttock and legs commenced. The pain is insane, it turns me into a wriggly worm, any movement provides a tiny relief despite the Endone and Ibuprofen. A couple of hours later the fever kicks in, and shortly after that the itchy rash. I'm uncomfortable all weekend. It is hard to remember when I have last been comfortable. My mouth is so sore, despite upholding my oral hygiene care and using the Biotene mouth wash against dry mouth. This interferes with my sleep waking me up every 90 minutes if not more. I don't like this treatment.
12 - Mon: I go for my ultrasound and the specialist says that it is not easy reading the scans as my dense breast tissue shows that there is so much going on making it tricky to evaluate the cancer alone. Comparing the scan to an earlier one from June the doctor says that the edges of the cancer are less convex and flatter in todays images. I think she was hinting at the treatment working.
14 - Wed: I go for my weekly blood test in the morning and I'm out again in the afternoon for genetic testing. My oncologist referred me onto the genetic testing to see whether I have the BRCA 1 or 2 genetic mutation which can further inform treatment, e.g. additional removal of ovaries and tubes. Results for genetic testing will be provided to me on 18th September.
15 - Thu: I get a call from one of the oncology nurses who tells me that my neutrophils are showing as low on yesterday's blood test (0.76). She advises me to still go for my infusion appointment tomorrow when they will do a blood test prior to treatment to check whether the neutrophils had gone up a bit in two days time.
16 - Fri: I turn up at the infusion center as planned and as advised the day prior a blood test is done before commencing treatment. The blood results were back and my neutrophils scored a 0.7 only. Nurse calls my oncologist to discuss and get further instructions. Outcome of conversation was to delay my treatment by a week and to perhaps change me over to Part 2 of the chemo treatment as soon as next week as I'm not tolerating the current drugs very well. There is a silver lining, as the part 2 treatment regime is a 3 weekly one and no longer weekly infusions.... The downside is that one of the new drugs is known as the 'red devil' which also has horrible side effects and turns your urine red. I'm future tripping about the new drugs, so that nonsense needs to be discounted and ignored. Who knows, everything may be fine so there is no point in worrying for nothing. Live in the now Germaine. 😁
19 - Mon: I have been feeling tired, weak, and breathless all weekend and today. I have zero energy. Walking around my bush block with the dogs feels like a huge effort. Raking a few leaves near the house exhausts me after only 3 strokes with the rake. I have nothing left in my body which is very frustrating. No physical energy, zero. I physically can't do what I want to do. So annoying.
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| I sit a lot..... |
20 - Tue: expecting 6pm call with oncologist. Stock take of Part 1 treatment: I have received 8 out of the 12 doses of chemo. I have received all my 3 weekly immunotherapy doses and am on target for that. Oncologist calls at 5:30pm and informs me that we are switching to Part 2 of the treatment, not completing the remaining 4 doses/weeks of the Part 1 chemo cocktail. This is because of my reactions to the infusion but more so because nerve damage is beginning to take place (I have lost feeling/numbness in most of my toes, big toes are fine).
I'm beginning treatment Part 2 on Friday AC drugs and my three weekly immunotherapy. Instead of the AC drugs being given to me 3 weekly as initially planned, I will be having these infusions every 14 days to increase the potency inside my body. This speeds up the chemo part of my treatment, meaning that on Friday 4th October I receive my last chemo dose if everything goes smoothly in terms of tolerating these drugs. As surgery needs to happen in a 3-6 week window of completing the chemo, this procedure will happen sooner too! Wow!!! I'm feeling flustered and shocked that there is so much speed and momentum suddenly. Things are going to happen quickly, I'm going to get through this, I may be totally recovered by Xmas? I don't know what to think, nor what it all means, how am I going to feel, etc.... I'm just pleased that there is momentum again and the plan sounds fine. Who am I to argue with my oncologist? right?
21 - Wed: I have my bloods taken ahead of Friday's infusion. The drugs get prepared on the thursday and therefore the blood results are needed in time for this step. My neutrophils have bounced back from 0.7 to 1.3. 1.3 is good enough for treatment.
23 - Fri: Infusion day of part 2 chemo drugs + immunotherapy. I'm a bit anxious to find out whether I will have a reaction to the new cocktail of chemo drugs (A/C)... I note that cycle 1 of part 1 was totally fine, it was only when commencing the second cycle of part 1 that the nasty infusion reactions started. Therefore on Friday 6th September there is again a possibility that I get really ill if I apply the past patterns to the present. [Don't do that Germaine - this is known as future tripping and is totally pointless.]
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| Infusion day - start of Part 2 Immunotherapy and cycle 1 A/C chemo |
Everything went well with the infusion. One of the drugs is manually injected (the red devil drug that starts with letter 'A'), and the other, with letter 'C', was administered via drip. Immunotherapy was administered, as normal, via drip. Treatment took 3.5 hours and then we had to rush across town to get my baseline echocardiogram done (which ought to have been done before commencing the A/C treatment, yet due to the rapid change in treatment strategy this was not possible). So, a heart scan? Yup, this A/C chemo cocktail is heavy on the heart and monitoring for potential heart damage is required.
24 - Sat: Woke up from a good night sleep. Feeling tired yet relieved from having a pretty normal night. I take my steroids in the morning, 8mg of Dexamethasone. This is double the amount I was taking before. I really don't agree with steroids. These things turn me into a monster. At 11:30am, this is 24 hrs following completion of the A/C infusion, I have to inject myself subcutaneously into the abdomen with some kind of growth factor hormone which stimulates the bone marrow to produce more neutrophils so that I don't get too neutropenic again.
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| Messing around with larger head gear/wraps 😇 |
28 - Wed: I'm doing well. I have overcome three days of being on a high dose of steroids which ain't much fun. My bowels aren't doing much despite me consuming New South Wales' supply of Movicol and Coloxyl, prunes and prune juice..... Nurses have accentuated the importance of regular movements... This has become my current obsession. 💩💩💩😂 On the flip side, my mouth has totally recovered. I also have no nose bleeds. So far so good on the mucous linings front of things...
September 2024
It was so nice to have had a Friday away from the infusion centre, although the nurses are absolutely awesome and I will miss them this week.
I bounced back energy wise by the Saturday, so the A/C chemo keeps you flatter but more comfortable for longer. Trade offs. So far I prefer this chemo regime than the one I started on. 🤞🤞🤞
3 - Tue: I had a call with oncologist around 1730. She told me that it is ideal to have the surgery 3-4 weeks after completion of chemo on 4th October, so surgery will be end of October. Beyond the completion of the chemo, I continue to receive 3 weekly immunotherapy infusions until end of June 2025. There may be the option of having the immunotherapy every 6 weeks if I can tolerate the double dose. (Mmm... I'm not sure about this but it may be worth a try, 6 weekly does sound pretty tempting!) I'm permitted to ask my breast surgeon to remove my portacath during the surgery if she's comfortable doing so. Otherwise it will be an additional procedure. The medical device is no longer needed if I am only receiving immunotherapy. The latter does not damage my veins therefore a canicular is fine for those infusions. I also asked whether I can take less steroids and I have been authorized to take a 1/2 dose of Dex, so only 4 mg on the Saturday, and maybe 2 mg on the Sunday and none on the Monday if I am not too nauseous. I'm seeing my oncologist for a face to face consultation and physical examination on September 24.
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| Neutrophils well back in normal range. Post-infusion injection is working at getting the bone marrow to make extra neutrophils! |
6 - Fri: I received my second cycle of A/C chemo only. No immunotherapy this time, that's for next week. Feeling fine after the infusion, a bit tired and a little reflux. Had a sound night sleep without Temazepam.
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| Cycle 2 A/C chemo only |
7 - Sat: Took my 1/2 dose, 4mg of Dex with breakfast. Self administered my growth factor injection which boost the bone marrow to produce more neutrophils 24 hrs after completing my infusion the previous day, so at 1100. Feeling a bit tired and some reflux, nothing worse than late stage pregnancy 😌
Weekend and start of the week have been slow for me (lots of fatigue) and everything tastes salty!
10 - Tue: appointment with plastic/reconstruction surgeon. My breast surgeon is making me go along to this appointment so that I'm fully informed of all my options although I'm not interested in reconstruction following my preferred choice of double mastectomy. We will see. I'm open minded and I will listen and absorb the information.
I had the consultation. Forty five minutes, which contained examination, photos, PowerPoint presentation of my options and the scheduling of a second appointment for planning. Surgeon was pushy and hastily left me with one option, which for me felt way too extensive, monstruous in terms of harm vs benefits and outcomes for patients. His preferred option for my bilateral breast reconstruction on the day of the double mastectomy would be to take skin from my inner thighs and transplant it into my chest, with two further operations to complete the job. (I don't have enough tummy fat to do the more common DIEP.) I would be cut and healing three times for a further 12 months vs the do nothing option that will have me recovered within 4 weeks of surgery mostly. I emailed the plastic surgeon this morning saying no thank you to his services. No reconstruction for me. I'm going flat.
11 - Wed: usual blood test ahead of Friday infusion
12 - Thu: GP appointment followed by bilateral breast ultrasound for surgeon update and prep
13 - Fri: immunotherapy only [no photo this time, it was a short appointment, just over 1 hour]. I don't feel much after an immunotherapy infusion. It's not like chemo which makes you feel quite gross and tired.
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| A photo of me now (15/09/2024) as I'm updating this page. |
14-15 weekend: Have lots of energy. I have bounced back mostly from the last chemo infusion that was about 10 days ago. I have noticed that my hair loss is accelerating again at an insane rate. I have no more eye lashes and only a handful of hairs remaining on my eye brows. I miss those. Face looks more like that of a fish rather than that of a mammal. Everything still tastes very salty. My toes are still numb. I'm back on a small dose (50mg) of Zoloft to keep my mood a bit more constant with all this stuff that's going on.... It helped me previously with my perimenopause symptoms and as chemo is launching me into menopause I'm not surprised that there are mood fluctuations occurring.
[12/10/2024 - I haven't updated this page for a month. I have wanted to but didn't have the energy nor the time. I didn't want to let this slip as I wanted this to be a real-time accurate account, and I now have to rely on my memory (chemo brain ain't the best) and medical reports. Let's update!]
18 - Wed: Telehealth call to receive results of genetic testing. First time I had a Zoom call with a health professional. Results showed that I was negative for a bunch of genes known to increase the risk of cancers, such as BRCA1 or BRCA2 amongst some other ones. This is really good news. It means no further surgeries to remove ovaries nor fallopian tubes. Phew!
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| Genetic testing results |
I had my blood test done which also looks pretty normal and pretty good for a chemotherapy patient.
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| Blood test results |
20 - Fri: Had my appointment with my breast surgeon. She's awesome. She's the same surgeon who removed a suspicious lump in April 2023 that turned out to be PASH tissue. We had a thourough discussion and both agreed on a way forward. On Tuesday 29th October I will have the following procedures:
Lymphoscintogram and Hook-wire Localisation followed by the surgery Bilateral Simple Mastectomies and Right Axilla Sentinel Node Biospy + Removal of Portacath
A week prior to the procedure I will also need to get bloodwork done as well as some further diagnostic imagery.
After the consultation I had to rush to the building next door for my A/C cycle 3 infusion.
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| Cycle 3 A/C infusion |
24 - Tue: appointment with oncologist was a face to face appointment. It is hard to know whether the treatment is on track in terms of outcomes until i have had the surgery and all the tissue gets analyzed by pathology. If there is some cancer remaining there are some further options... Taking more lymph nodes away, radiotherapy, or more chemo in the form of oral pills in addition to the immunotherapy which continues to June 2025. Fingers crossed it will all be gone.
October 2024
02 - Wed: Had my pre-infusion blood test. I love my phlebotomist. She's really cool. Sometimes there's a sting of the needle but most times she's awesome and I don't even feel the needle going in. She's about my age, divorced, has been single for 10 years, and is thinking of finding someone to spend the rest of her days with. We had a great chat about the bumble dating app. I love connecting with others who are also their true authentic selves. It's nice, it's meaningful. 😍
04 - Fri: I have been looking forward to this day for a really long time. Today is my last chemo infusion!! 🎆🎇🎇 I had my last cycle, cycle 4 A/C chemo along with my three weekly immunotherapy. This makes it a long 4 hour appointment. To celebrate the occasion I was also accompanied by a really good friend who has taken me to other infusions, driven me home from infusions and from my hospital admission (in the early chemo days...), and made me baked and non-baked healthy high protein goodies to help see me through these tough few months. 😍
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| Last chemo infusion!! Cycle 4 A/C + Immunotherapy |
14 - Mon: Online lunch and learn session for breast cancer patients
31 - Thu: Doing well. Blood pressure was a bit higher and instead of aiming for 100, my 'normal' was set at anything over 90 which I managed to sustain which also allowed me to be discharged after two nights in hospital instead of three. I also received an iron infusion which was awesome, it really gave me a boost that I felt 4-5 days later.
23 - Wed:
- pre-infusion blood test
- pre-admission blood test
- pre-admission anesthetic review
- pre-admission breast ultrasound
25 - Fri: immunotherapy infusion (the last time via portacath which is going to be removed at the time of the surgery, yippeee!) - I forgot to take a photo! Oops
29 - Tue: hospital admission and procedures:
Lymphoscintogram and Hook-wire Localisation followed by the surgery Bilateral Simple Mastectomies and Right Axilla Sentinel Node Biospy + Removal of Portacath
Two - three night stay likely.
Operation went well. It was a bit long due to lots of bleeding. Started at 3pm ended at 8:30pm. Man I was hungry when I got to the ward. I was totally confused following the surgery. I thought I was still in recovery waiting to be moved to my room on the ward but I actually was already in my room. Confusion after anesthetic messed with my head, but I was otherwise comfortable and pain free. I only got to the ward around 10:30pm and was woken up every 30 minutes during the night to take my blood pressure and other vitals. This was because I was on the low side. I'm generally on the low side but it always concerns doctors. I had to convince the nurses to let me walk to the bathroom to pee, they were insisting on a bed pan. I reassured them that I could do. They walked me to the bathroom and all was ok on that front too after that successful bathroom trip post surgery. Phew.
30 - Wed: After a bit of dosing, on and off throughout the night, the morning rounds begin and I get a great breakfast and coffee. Morning rounds consisted of nurses and their hand over to the day staff at 7 am, surgeon visit, anesthesiologist visit, breast care nurse visit, and physio visit. Everything was going well. Surgeon was also pleased with the way things turned out. She ended up removing 4 lymph nodes from my right armpit in addition to the breasts. Everything was sent to the lab for analysis with results being available at the time of my follow up visit.
31 - Thu: Doing well. Blood pressure was a bit higher and instead of aiming for 100, my 'normal' was set at anything over 90 which I managed to sustain which also allowed me to be discharged after two nights in hospital instead of three. I also received an iron infusion which was awesome, it really gave me a boost that I felt 4-5 days later.
Going home was fine. I was comfortable and appreciated the peace and calm, a thing one does not get in busy hospitals. The care was amazing. I felt safe and in good hands at all times. I'm really lucky.
November 2024:
1 - Fri: Part of the discharge from hospital contained a tranfer of my care to the 'Hospital in the home' care team. This meant that everyday a physio and nurse would visit to care as one would in the hospital setting. This was seamless. A perfect transition of care. All health professionals knew everything about my case which was awesome. I was sent home with drainage tubes draining both surgical sights. Theses were going to be removed by the nurses once I had two consecutive days recording less than 40ml. Not much was draining from the sites and therefore the nurse estimated that the drains would be removed the next day if it remained below the threshold level.
Physio also came by and was happy with my range of motion doing the exercises for increasing the range of motion of my arms and shoulders. There was no need for her to return. I was deemed competent.
This was also the first day I took the compression brace (like a corset) off to have a look. Picture below.
2 - Sat: As predicted by Friday's Hospital in the Home nurse the drains were removed by today's nurse. It wasn't painful at all. Blood pressure was good, above 90. I was feeling fine and therefore they fully discharged me from this service too.
At this point I have been off chemo for about a month, had immunotherapy a week ago and am only on antibiotics prescribed by the surgeon and oxycodone as and when I need it. I'm in no pain. So just taking the antibiotics and paracetamol when a bit uncomfortable. Although, sleeping only on my back is getting annoying.
08 - Fri:
- follow up appointment with surgeon to get pathology results, get stitches removed, and plan any ongoing care or scar revisions. (There is a small chance that a 'flat closure' will create dog ears in the middle of my chest. Those can be revised by a further surgery later next year.)
The follow up appointment went well. Surgeon is pleased with the healing that has taken place over the past ten days.
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| Dressings have come off and little STERIS trips put on. Need to leave these on till they come off naturally through showering, only a few days. |
The pathology results contain good news, there were no cancer cells in the 4 removed lymph nodes. This indicates no spreading. The tumor that was removed had shrunk yet the chemo and immunotherapy didn't get all cancer cells. As an insurance policy the surgeon and oncologist recommend I go on an oral chemotherapy drug called capecitebine for the next 6 months (8 cycles) along with the immunotherapy infusions that remain 3 weekly till June 2025. I think this is good news.
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| Summary of pathology report. |
15 - Fri: Immunotherapy infusion received via canula as I had the portacath removed during the mastectomy procedure. All went well. My Mom came with me to the appointment. (Both of my parents are visiting me here in Oz for a month from overseas. Hence the delay in updates...). Oops, also forgot the traditional selfie in the chair.
Rest of November: I enjoyed hanging out with my parents. I was fine. My range of motion of my arms and shoulder returned to its preoperation state. I was driving within a week. I had read online that it would take up to 4 weeks to get behind the wheel. Phew. That was not the case. I have been regaining most of my energy and strength despite the operation, and all that is because I'm nearly two months without chemo. My taste has returned too. Man! Everything being salty including water drove me pretty insane there for a while. I have been outdoors and very active.
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| Steris strips have come off |
Some strange feelings did occur about two weeks post surgery, an intense pain or hypersensitivity of my skin, not at the surgical site, but under my left arm all the way round to my back particularly my left shoulder blade area. This feeling of intense bruising and pain upon touching (even clothing) remained for a good few weeks. In the beginning of this pain I would grab oxycodone in the evenings to get comfortable before bed and had to do that for about two weeks. The skin still feels odd today [21/12/2024] but I don't need pain killers. I can't wear a bra with prosthesis at this stage yet so I'm still proudly flat.
December 2024:
3 - Tue: Telephone consultation with oncologist.
We often talk about side effects, anything weird that has been happening in my body. I have not listed everything above when it was happening but I relayed to my oncologist that over the last 3-4 weeks or so I have been noticing my joints in my hands/fingers stiffening up and increasingly getting locked after forcing to close my hand in a fist position. Painful joints - a bit alarming to me.
Another change I noticed was that sexual intercourse was impossible and the attempt was super painful. (I didn't discover this till recently because one needs to be super careful when on chemo as I'm highly cytotoxic to others. This is not something one usually things about and it sort of limits what I was able to do in the bedroom.) I told her this too, as I was totally prettified that the joys of sex were gone for ever.
I reported good news too, like my energy being back, my taste, my hair growing back and nails getting stronger...
The oncologist mentioned that the joints issue and the pain when attempting sexual intercourse was related to being thrown into full blown menopause due to the chemo. When all my treatment has completed in June I may be able to receive HRT as my cancer was not hormone sensitive, I had the triple negative type of breast cancer. In the mean time to improve performance in the bedroom I have been prescribed estrogen pessaries to take every night for a few weeks and then 2-3 nights per week as needed. I will report back if this works. 😉
Oh! my oncologist tells me that I also have that gene mutation (3% of patients have this) by the way which prevents me from breaking down the chemo capecitabine drug and therefore the oncologist has put me on a reduced, half dose of capecitabine.
4 - Wed: Usual pre infusion blood test done. All looks good.
6 - Fri: Mom and I head to the infusion centre again where I receive my immunotherapy via canula and I'm also sent home with a load of capecitabine pills, a list of side effects, and a schedule to fill out. I start taking the capecitabine the next day for two weeks and get one week off. This is a cycle of which I will be doing a total of eight if my body tolerates it. Fingers crossed.
21 - Sat: I have completed my first two weeks of capecitabine and neatly completed the form. Sadly I missed one dose a few days ago. Hopefully my compliance will be 100% in the next cycle. 👌
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| My form - cycle 1 capecitabine |
My hair is returning nicely, I'm tired again but suffering less fatigue than before surgery. The sleep isnt great, I still have all my taste. My thermoregulation is a bit off, I'm going hot/cold frequently, my eyes are pretty red most of the time, my skin is dry. I have an open wound (from falling over when the dogs spotted a possum on the driveway they wanted to chase...) on the top of my foot that isn't healing at the normal pace (it's been two weeks and counting...).
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| Me today [21/12/2024] updating this page - all content from 29th October to present in one go. |
24 - Tue: pre-infusion blood test (a day earlier due to Wednesday being Christmas day when labs are closed.)
Also had a phone call consultation with my oncologist who is pleased that I'm not showing any common severe side effects with the capecitabine like hand and foot syndrome (red painful palms and soles that then blister and crack....yikes!), vomiting and diarrhea. The main complaint is tiredness and constant fogginess, like being permanently stoned or slightly hungover. It's annoying. I miss my clear mind. This however is a common side effect which is meant to be bearable for another 6 months according to my oncologist. This is known as chemo brain or chemo fog. I don't like it. I like clearness, this chemo fog is weird. I'm even a little concerned getting behind the wheel. I have experimented drinking tons of coffee, but that doesn't cut through the fog either. I guess I'm going to have to settle and accept the fog for now.
27 - Fri: immunotherapy infusion
The immunotherapy went ahead as planned along with being given the go-ahead to commence the 2nd cycle of capecitabine. Bloods were all good and in the normal range.
January 2025:
06 - Mon: Updating on the list of side effects I' have been been feeling over the past couple of weeks. Fatigue is creeping in more. The pain in the joints is getting worse. In the mornings when I wake up I am incapable of closing my right hand, such intense pain and stiffness establishes overnight. I have also developed a tender scalp on the top and left side of my head, it is almost like hair pain but different. My mood worries me. I think it is linked with living in an achy body. I'm a bit fragile now. On the plus side my hair [on my head] is really coming back nicely, thicker than ever before!
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| Thick and dense hair regrowth (01/01/2025). |
14 - Tue: Call with oncologist
Was feeling a bit under the weather today with a very mild fever that remained just under the 30C threshold for an ED presentation. I spent most of the afternoon in bed. Oncologist followed up with me asking about any symptoms and checking in to see whether I was able to have sexual intercourse again. I told her that in regards to the latter things haven't improved much so she prescribed another higher dose of vaginal estrogen gel. With regards to the pain in my joints of my fingers and toes, she suggested perhaps skipping a cycle or reducing the dose. I mentioned that I was willing to put up with the pain and continue treatment at the same dose.
15 - Wed: Blood test
Blood tests were done, but the lab forgot to give us the cortisol reading/results, so dispensing of drugs was based on my previous blood test. The blood test did show that the infection/inflammation marker (CRP) was elevated which was consistent with me feeling crappy the previous day.
17 - Fri: immunotherapy infusion & pharmacy dispatch of a new box of capecitabine chemo tablets.
Infusion went well and I received another box of capecitabine to start taking tomorrow.
29 - Wed: Palms of my hands begin feeling tight and delicate, and being on my feet is becoming uncomfortable.
31 - Fri: Palms of hands are severely soar as well as sole of feet rendering me nearly incapable of walking and unable to pick things up with out pain, flicking the cap off my toothpaste was super painful, unscrewing the cap of the spring water also unbearable. I drove myself to the chemist to get a 10% urea cream and found some left over Voltaren gel in my first aid cupboard. Applying each 3 times per day. So, I have finally shown sides of one of my most dreaded side effects, that of hand and foot syndrome derived from the capecitabine.😑
February 2025:
02 - Sun: My routine of applying both creams 3 times per day is really working. I'm eager to see my oncologist on Tuesday to double check whether I'm doing the right thing by applying these two creams as these come from my internet research. Greasy hands and feet, that's me! But at least the pain and burning sensation is manageable and the hand and foot syndrome has not progressed to oozing blisters and open wounds. Fingers crossed it won't get there. Sadly, if I'm honest with my oncologist I'm pretty sure she will make me skip a cycle or reduce the dosage. Both of these actions worry me as it may not give me the best chance of fighting this aggressive cancer. It's all a balancing act. I'm going to ask my oncologist's opinion on fasting. There's evidence that fasting for 16-17 hours, reducing my eating window down to 7 or 8 hours per day increases keton production which in turn address cancer cells in the body. This could be an additional treatment I'm keen to undertake given it is safe to do so whilst on Pembro and Capecitebine.
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| My current Hand and Foot syndrome treatment as researched on the internet. Thank you Google AI. |
04 - Tue: Face to face consult with oncologist - Oncologist wants me to reduce my capecitebine dose to only one pill in the mornings instead of two and continue taking two pills in the evenings.
05 - Wed: Blood test - I need to be on to them to test everything including my cortisol this time. - cortisol levels are currently being tested and appear normal. I was told for the first time that cortisol test require me to be in a fasted state. Noted, I wont eat before my blood tests in future.
07 - Fri: Immunotherapy and advice on continuation of capecitebine. Immunotherapy went well, no issues. With regards to the capeciatebine I was also told to wear cotton gloves at night after having lathered my hands with urea rich cream. I do this practice every night without fail. It is the only way to stay on top of the horrible symptoms and be able to continue with the treatment.
25 - Tue: Had a call with my oncologist discussing the hand and foot situation and we agreed to go back to my full dose of two pills in the morning and two in the evening. Everything else is routine.
26 - Wed: Routine blood tests carried out and all was fine.
28 - Fri: Immunotherapy went well without a glitch.
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| My happy pit stop on my morning walks. 😍 |
March 2025:
18 - Tue: Oncologist telephone call went well. Interestingly I was asked and given the option to stop the capecitebine treatment as most people find it too much to handle in terms of nasty side effects. I want to give the treaetment the best chance there is to rid my body of any cancer cells so I decided to keep going to complete another four cycles.
19 - Wed: Routine blood test was carried out and all was well again with naturally the white blood cells and neutrophils being on the low side of things meaning I need to avert any kind of risks of infection. I'm lucky to be spending most of my time on my bush block in the mountains, in nature, being good to myself during these times.
21 - Fri: I had my immunotherapy infusion again. It was a little tricky getting the canula into my vein, this had to be attempted twice with two veins, but we got there in the end. The infusion staff are absolutely wonderful and after nearly a year of regular treatment, I really think I'm going to miss the nurses.
April 2025:
02 - Wed: Symptoms update: I'm doing well considering everything. I have found increased spirituality and learnt to live in the "now". Only the present counts. This saves my from future tripping and encountering the thoughts of "if this doesn't work I'll be dead within 18 months" kinda talk. That's not helpful to me. I live day by day and despite all this cancer treatment shit I am the happiest I have ever been! Man, how is that possible? I got to bed peaceful every night and wake up every morning itching to get my day going. I love my day to day living, of course there are challenges here and there but I accept them, it's ok. Not accepting what happens is simply me fighting with reality which leads to endless struggle. It is what it is. I know what I can control (my feelings, thoughts and beliefs and how I respond to situations), and I clearly know what I can't control. This knowledge brings peace in myself.
So, symptoms:
- extremely tired, and tire quickly following physical activity (e.g. gentle walk...)
- stinging and teary eyes
- runny nose (non-stop!)
- slightly sore mouth
- not able to taste everything - not the strange salt thing from when I was on the A/C chemo
- joints in fingers are sore and stiff and I have trigger fined (one in my left hand, and three in my right hand)
- carpel tunnel in my right wrist - sleep with splint every night to minimize tingling weird numbness sensation
- hand and foot syndrome where palms and soles of feet are read and blister like (tips look like deflated balloons)
- weight gain - horrible fat added to my butt and thighs - once I get the energy I'm going to sort it out
- vaginal sexual intercourse not possible - pain and bleeding - no matter how much I try 😉
- rectum - bleeding every time a do a number 2 💩 - I believe it is taring, similar to the other orifice above, despite using poo softeners and other laxatives. Pooing hurts!😡
- left heal hurts (been going on for two months at least - and will mention it to my oncologist next week Tuesday when I chat with her
- memory and brain function - really poor - I forget a lot, have poor ability to focus, am tired often, and am beginning to fear driving long distances because I do dumb shit at the moment and don't want to cause an accident.
That's it from me today. I have done a huge update from early Feb to 2nd April 2025. Here is what I look like now. 👇
More soon.....
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| Lovely autumn day out on the deck |
More soon.....
08 - Tue: oncologist call - had a good call with oncologist. We chatted about the severity of my hand and foot syndrome mainly and I raised the added issue of heal pain in my left foot. She confirmed that heal pain is common and not to worry about that. She also mentioned that I had the option to stop the capecitabine, but I said I would like to complete the treatment just like what was done in the trial we are following. So I got the goahead to continue with the next cycle of capecitabine (cycle 7 out of 8).
I also mentioned that I had blisters on my two of my left toes that have popped (seen by my GP the day before), and that my eyesight was getting worse and had continued stinging. I was told to go see an optometrist asap to assess what the damage was. Appointment made with optometrist for Thursday 10th April.
09 - Wed: pre-infusion blood test - blood results were good so I have the go ahead to embark on cycle 7 and have my planned immunotherapy infusion on Friday. My favorite phlebotomist is no longer at the pathology lab sadly. Lately it has been a new face each time.
10 - Thu: Appointment with optometrist determined that I had keratitis of the outer layer of both corneas. Here is a bit more info on keratitis which I'm currently experiencing.
Capecitabine, a chemotherapy drug, can cause keratitis, an inflammation of the cornea, in some patients. This can manifest as ocular irritation, decreased vision, and corneal deposits. In most cases, these symptoms are reversible upon discontinuation of the drug, with the cornea clearing and vision returning to normal.
Here's a more detailed explanation:
- Studies and case reports have documented cases of keratitis associated with capecitabine treatment.
- Affected individuals may experience ocular irritation, decreased vision, and the presence of corneal subepithelial granular deposits.
- In most cases, the symptoms of capecitabine-induced keratitis resolve after the drug is discontinued, and the cornea returns to normal.
- When corneal toxicity is severe or vision is significantly affected, interventions like corneal scraping and bandage contact lenses may be considered.
- Medical oncologists should be aware of this potential side effect and promptly investigate any ocular complaints in patients receiving capecitabine.
the above is borrowed from Google.
The optometrist gave me eye drops to use 5 times per day. I have been doing this and 20 days later I still don't see nor feel any difference. 😞
The keratitis makes it quite tricky to drive as I cant see clearly, reading a book is problematic, watching TV is a blurry experience, so I'm mainly listening to audio books and podcasts these days. It is super frustrating to have vision you cant fully depend upon.
11 - Fri: immunotherapy infusion - Infusion went well, no issues reported.
20 - Sun: Easter Sunday morning I'm sitting in the Emergency Department (ED) waiting to be seen by a doctor for my big toe which I suspect to be an infection. Suddenly out of nowhere at 2 am I woke up with a painful throbbing in my toe. Oh no! Infections and fevers are serious when you no longer have an immune system so I knew I had to go to ED. Took some paracetamol, slept a few more hours and got to the ED at 7am, saw the doctor at 7:30 am, received a new dressing on my toe and a script for antibiotics to take 4 times a day for five days. A culture was taken too just in case the antibiotics didn't work and I may need others specific for the organism. Thankfully the antibiotics made my toe feel much better within a couple of days. Yippee!😀 Meanwhile my partner was painting the Easter eggs and getting everything ready for our family Easter brunch with the kids. I got home just in time for the Easter egg hunt. 😃
My hand and foot syndrome documented photos to date [29th April 2025]:
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| 4th April 2025 - only one blister so far. |
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| 6th April 2025 - monster blister keeps growing... |
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| 7th April 2025 - monster blister pops on my way to the GP to get it drained and dressed. |
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| 20th April 2025 - in ED for big toe infection, note little toe also has deflated blisters. |
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| 24th April - big toe no longer infected, little toe looking angry and mini blisters appearing elsewhere. |
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| 24th April 2025 - soles of feet very red and tender - it feels like I'm walking on a coarse sandy beach of lots of tiny broken sea shells. |
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| 27th April 2025 - first blister on fingers appears. Very painful. Feels like a stubborn splinter when touched. |
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| 27th April 2025 - both hands generally more red, tight and inflamed feeling - making knitting, typing, writing, buttoning up, zipping up, all quite painful. I want to use my hands pain free! |
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| 27th April 2025 - feet getting angrier and red, are pretty sore (like walking on broken seashells). |
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| 27th April 2025 - scared to lose the big toe nail 😖 |
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| 29th April 2025 - hands getting worse after 7 cycles of capecitabine - remember I'm one of the few that can't metabolize the drug, so this may not be an issue for patients who don't have the gene. |
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| 29th April 2025 - feet looking a bit better, heal pain has gone, yet it still feels like walking on broken seashells. I bandage up the blistered toes daily after applying betadine as the blisters are still a little leaky. |
29 - Tue: As I am writing this today I have a sore mouth, sore eyes, poor vision, sore hands and feet, and an annoying upset tummy which is making me stay close to home for unpredictable bathroom use. I am happy though as all treatment is completed on Friday 23rd of May 2025!!!! Yippee!! This is a picture of me today. Occasionally a little consumption of the green stuff eases symptoms for a few hours. It's nice to have a break from side effects from time to time.
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| 29/04/2025 |
29 - Tue: Call with oncologist - the call never happened sadly, new appointment with oncologist scheduled for 20th May
30 - Wed: pre-infusion blood test - all went well and bloods are good enough to receive my immunotherapy and continue with my last cycle of capecitabine.
May 2025:
02 - Fri: Immunotherapy infusion and commencement of cycle 8 of capecitabine. All went well and I finally remembered to take a selfie again. Here it is. :-)
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| 2nd to last infusion done! Treatment completion only 3 weeks away!! I can't wait!! |
23 - Fri: Last immunotherapy infusion and completion of chemotherapy 🙌🥳🎉😀