Wednesday, 29 February 2012

side effects

Day 1. FEC treatment 1. Slight 'taste' during administration of F. Slight tingling in nose during administration of C. Ate frozen orange juice chips and half an egg sandwich during infusions. Felt slightly woozy/heady after treatment. Good appetite afterwards. At least two litres of water and other fluids taken. Took all meds on time and felt ok overall. Slept well.

Day 2. Took meds as prescribed. One or two fleeting moments of vague nausea, quickly averted by eating something. Appetite better than usual; ate very healthily throughout day. High fluid intake. Feeling good. Heart fluttering when laying on left side. Some palpitations/heart thumping through the day. Neulasta injection at 9pm. Slept well.

Day 3. Feeling a bit 'hung over' on waking. Slower to get moving. Decide to cancel plans to go out for a walk as not feeling much energy, but after eating change mind again and head out for river walk. Short walk and play in river with kids. Pub meal afterwards with friends. Hungry and good appetite, but tummyache is more pronounced now. Taste buds somewhat affected - some foods taste bland. By end of meal, feeling tired and a bit done in. PICC arm a bit sore. Glad to head home. Slept well.

Day 4. Meds as prescribed. Feeling pretty good. Tummyache/distended belly. Painted half my bedroom and hung a shelf. Heart still thumping occasionally. Skin on face dry and peeling. Ate and drank well throughout day. Slept well.

Day 5. Child-free day! Felt ok on waking. Baked banana bread, cleaned kitchen and did two loads of laundry. Two hours' of filming with B. Made potato and leek soup. Stroll to allotment (purple sprouting broccoli is doing well!). Late evening develop fluey aches all over body. Left upper abdomen very tender and sore. Go to bed but have trouble sleeping. After waking several times, get up at 2:30 a.m. and take two ibuprofen for pain. Manage to sleep till 7 a.m.

Day 6. Lay on sofa and watch dvd with three-year-old. Feeling very lacklustre. Collect five-year-old from school at 12:20 and go over to friend's house. Lay down on sofa with five-year-old, who is complaining of sore tummy. My own tummy is very, very sore and tender. Still have a good appetite, but totally lethargic. Lay on sofa for three hours, catnapping. Pain in PICC arm/chest. Feeling tearful and tired. Spleen area so tender. Call unit to ask about spleen pain. Told to take paracetamol and ring back in the morning if still bad. Slept ok.

Day 7. Slow to get going in the morning, but not feeling so bad. Lethargic and moderately fatigued. Sore throat. District nurse at 11:30 a.m. to flush PICC line and change dressing. Line working fine but crusted with dried blood and DN pulls it out by .8cm when cleaning it. Arm and chest quite sore before and after. Dry cough not helping. Site bleeds after new dressing applied and sore. Spleen still tender but not as bad as yesterday. Spent an hour in the park after school run...beautiful, warm day. Arm more sore after rescuing child from various mis-haps. Hot water bottle on arm/chest all afternoon/evening. Still have a good appetite and drinking plenty of water, peppermint tea and green tea and honey with lemon.

Saturday, 25 February 2012

Day 3

Day 3 and I'm not feeling too bad. In fact, I've felt so well that I wondered aloud last night if I'd been given a placebo. Two or three moments of feeling the tiniest hint of a delicate tummy - quickly staved off by eating something - has been about the worst of my side effects so far. This morning I woke up, after only about 5 hours' sleep, and tried to work out if I felt bad. Hard to tell, as I'm not a morning person anyway and never leap out of bed full of the joys of the new day.
Day 2 - modelling my Buff Headwear, kindly given to me by a friend.


Last night, Rob gave me my Neulasta injection. Not before I googled it, of course. Spleen rupture? Acute respiratory distress? Eeek. We phoned the chemo ward to check if I really needed to take it. The very understanding nurse reassured us that it was prescribed selectively only to patients who were felt would benefit. Neulasta works alongside chemo to rebuild red and white blood cell counts, with a view to reducing the chance of neutropenic sepsis (very serious infection that will put a patient in hospital on IV antibiotics). I believe I have been prescribed this because I have small children, and thus a higher risk of coming into contact with germs that could make me very ill when my immunity reaches its lowest point. Each injection costs in the region of £300 - £1,000 according to the internet. So I had to accept that the risks in this case would be outweighed by the benefits. So far, my spleen seems happy and I'm breathing normally. One of the most common side effects, affecting perhaps 30% of people who take Neulasta, is bone pain. So far, I have not experienced that either.

Why am I having such an easy time? I've been trying to figure it out. Perhaps because I really am a pretty healthy person. And I've been trying to eat even more healthily for the last few weeks in preparation - green smoothies, gallons of filtered water, nine portions of fruit and veg per day and lots of 'healing' foods. Maybe because I didn't expect to suffer too much. I have been more worried about the long-reaching effects of chemotherapy - the potential for heart damage, reduced cognitive function, liver damage - than of the short term ones. I'm getting a lot of support and that must make a difference to my stress levels. And I'm trying to keep positive and see the humour in the whole thing.

Well, it's only Day 3. Still a long way to go. But I'm enjoying each good day while it lasts.

Thursday, 23 February 2012

starting treatment

What a wild month. Days of feeling like this is the worst thing that could possibly happen to me. Days of thinking this is going to be the most amazing year of my life. Swimming in the depths of utter despair. The blackest of times. Understanding what it is like to not be able to get out of bed in the morning. The tears, how they have fallen. Hugs. Hugs like no other hugs I've received. I haven't been able to feel my own mother's arms around me, but the arms of many mothers have held me this month. I have sobbed into their necks, wetted their hair with my sadness. And though my dad is too far away to make it all better, I have felt the strength and protection in the arms of the fathers I know here.

When you stare Death in his beady little eyes, you have two choices: curl up and give up, or Live. I have chosen the latter.

Today marked the start of treatment. I have opted to have neo-adjuvant chemotherapy. Three cycles of FEC followed by three cycles of docetaxel. You can read about this regime here. This will be followed by surgery and then radiation and then five years of Tamoxifen. The reason I have opted to have chemo first is that there is a chance it could eradicate the cancer cells in my lymph nodes, reducing the chance that I will need to have all my axillary lymph nodes removed. This in turn will lower my chance of further life-long complications in the use of my dominant arm.

Today's visit to the hospital involved, firstly, the insertion of a PICC line. My nurse was very chatty but not dippy, which I appreciated. I respect intelligence and she came across as very capable indeed. Aside from having to hold my head in an odd position and wave my arm about up in the air, it went without a hitch, and a chest x-ray confirmed the end of the line was in the right place. Phew!

We made our way back up the chemo unit, where my cold cap was chilling like a good chablis. Well, the cap was hot pink, so maybe it was more like a cheap Pinot. Anyway, the nurse helped me put it on. I can tell you one thing: It is most definitely NOT the new black! I looked like the biggest dork on the English Riviera, but it was worth it just for the laughs. The first 20 minutes were pretty uncomfortable. More of an ache than outright cold. But the worst bit was the chin strap (the cap looks very similar to a riding hat, but must be very snug-fitting to work). This strap pulled my lower jaw out of its usual position and I spent the whole three hours trying to relieve the pressure by tugging on it with my right hand.

After I'd cooled for about 40 minutes, I was taken to my private treatment room. As soon as I entered this 'safe' space, my fears bubbled to the surface. My chin wobbled and my body shook uncontrollably under the fluffy blanket I'd brought from home. I was scared. Terrified. I felt like I was facing my own execution and needed to consider for one last moment whether this was the right choice. The nurse held one of my hands and Rob held the other, and I focused on all the love and support that have been coming my way for the last few weeks. I breathed, and I gathered myself, and said I was ready.

My particular chemo cocktail requires the nurse to push the syringes full of drugs manually into my PICC line, so I got one-on-one attention the whole time. First she flushed the line, then gave me an anti-sickness drug. Epirubicin, a dark red fluid was next on the menu. This is a very harsh drug. If it accidentally escapes from the vein it damages tissues. It has to be pushed in alongside saline to dilute it, so this infusion took the longest. Next came my fluorouracil. Finally, the cyclophosphamide. This one gave me a slight tingling feeling in my nose, like I'd eaten wasabi, so not entirely unpleasant.

I had to sit with the freezer on my head for another hour. The nurse took this time to explain all the pills and gear I was taking home. Lovely husband gets to give me an injection tomorrow. That one is meant to help my blood count recover faster. I've got two anti-sickness drugs and a steroid to take for three days. This is more drugs than I have put in my body for the whole of my life so far! I also have a bag of supplies the district nurse can use to flush my line out each week and to take bloods just before my next chemo in three weeks.

It was a relief to be finished. I dried the melting ice from my hair and gathered my things. We left. I felt slightly giddy, but not bad. My wee was indeed red! But I felt ok. We collected the girls and came home. I told my two bigger girls a bedtime story about an evil witch who cast a spell on a mummy because the witch was angry that the mummy was so happy. The spell caused bad cells to grow in the mummy's boob, so she had to go to hospital to have poisons put into her body to kill the bad cells. The poison also killed some of the good cells, so her hair fell out and she felt tired and sick and grumpy. But soon, the poison did its job and killed the bad cells, and after a little while, the mummy was better and could go back to being a happy mummy.

I think they understood.