11) Drugs, Drugs and More Drugs

 

Chemotherapy time finally came around. Nic and I went along for our afternoon outing with my little pre-prepared bag with my record book, puzzle books, colouring book, pens, tablet with a downloaded program to watch, lip balm, bottle of water, packet of Worthers Originals and my lucky charms that friends had bought for me. This would take a minimum of 3 hours, and I can tell you that everything in that little bag was needed. I was really quite frightened on this day, I don't normally like to even take a paracetamol, and now I was going to be filled with more toxic drugs than I'd ever taken in my entire life!

We were sat in a comfy chair, and the lovely staff introduced themselves, my Nurse today was Nurse Chatty who informed me what would happen: I would have a cannula inserted into my left hand, (because I've lymph node removal from my right side, this arm cannot be used for cannulas, blood tests, blood pressure - anything!!) I would have a saline infusion, and an initial infusion of Dexamethasone (a steroid to enhance the anti-sickness medication) and Onsdansatron (anti-sickness). Following this a nurse would infuse 5 x 50ml syringes of the Cancer Busting Chemotherapy combination - the FEC part of the FEC-T I would be receiving. Another saline infusion and then I could go home. Simple!

After 3 attempts to site a cannulla into my, actually very good veins, we had success. This has worried me because if these veins continue to misbehave, I will need to have a central line inserted to have the medications through (A central line is a semi-permanent fixture through your chest, it remains in situ until the treatment is over). Nurse Chatty, reassured me that, at the moment, she feels confident that my veins will be fine. Nurse Chatty infused the Chemotherapy drugs, and as she talks as much as I do, the time went really quickly! she gave me some really good advice along the way about resting, diet and no-exercise (as Dr Brightside had said). She also warned me what to expect with each drug: after the first 3 syringes of red medication I went to the toilet - my urine was the same shade as Rose wine!, the next syringe made me feel slightly spaced out, like I had drunk a couple of glasses of the Rose wine, and the final syringe made the end of my nose tingle!!

Following the drugs, Nurse Chatty gave me some medication to take home: oral Dexamthasone, as a reducing dose over the next 4 days, oral Onsdansatron for that night and the following morning, and Domperidone (anti-sickness) to take on top of the othe anti-sickness drugs if required. I felt fine and sure that I wouldn't need the extra anyway - I am such a strong and healthy human!! 

At home, I felt hungry so ate a normal dinner and then settled down for the evening. 3 hours later at 8pm I felt a little nauseous so took the Onstansadron as instructed ..... 25 minutes later I feel like I was on a small ferry on the roughest sea in the world! I couldn't move the nausea was so bad ..... I took the Domperidone!! already feeling like I'd given in (this, like everything in life, is clearly a competition I have to win!!!!). I sat with my head on my daughters (Hope) lap like a baby, a bit like when you're really drunk and find one position where you don't feel sick, so don't move ever - I couldn't sit up, I just stayed there for half an hour. Eventually I felt a little better and went to bed to watch telly where I could fall asleep if needed. A couple of hours later I was back in that 'don't move me' mode, and eventually I ran to the bathroom ....... Vomiting violently, with Nic rubbing my back, and Hope bringing me water. I felt much better after I'd been sick, I settled in bed and slept for a full 6 hours. 

That was day 1 - the day of treatment. **Please remember, this is my journey and how FEC-T affected me - it will be different for everybody!**

Days 2-5: I woke up looking very red! now I do have Rosacea which gives me a pink butterfly shape across my face, this can get very red when I'm hot and with some medications - so this was what was happening, not an allergic reaction, just normal for me!  - I looked like a tomato! this only lasted for a day or two though. I felt nauseous like a bad hangover, and I learned quickly that this is NOT one of life's competitions, I was stupid trying to cope without the extra medication (I had taken the Onsdansatron and Dexamethasone as instructed), and that I do actually need to take the Domperidone three times a day before the nausea takes over. To put it in perspective, the nausea wasn't so bad that I had to stay in bed, I did get out of the house - sometimes I sat in Costa to wait for my family to do their shopping (it was the week before Christmas), but I still got out. I was very grumpy! I had no patience at all, now I don't know if this was hormonal as the FEC-T affects my ovaries and hormones, or if it was because I was feeling unwell - but I was very short-tempered.

Days 5-6: Indigestion, incredible indegestion, like when you're 9 months pregnant. So the anti-sickness tablets could stop and the Gaviscon started - straight from the bottle! (NOT MEDICALLY RECOMMENDED!!!). On Day 5 I woke up with a lovely bout of oral thrush, it felt like my mouth had been coated with Vaseline, this was Christmas Eve so there was no GP service, so after discussion with my Oncology team over the phone and my local pharmacist, I bought some Daktarin over the counter - the thrush had cleared up by the following day. I started noticing the fatigue on this day, however I put a lot of it down to Christmas preparation, my house filling up with family members as they came home from various Universties, and life just being generally busy. I also became very conscious of germs, living in close quarters with lots of people and their germs, and I had been warned that days 7-14 were likely to be my neutropenic days. Scalp pain also started on day 5 - like when you've had your hair up in a ponytail all day, it just aches and feels slightly bruised. 

Day 7: This was Christmas Day, and I felt physically fine. My scalp pain was awful, I couldn't bear to have my hair touched, but other than that - I managed my Christmas dinner!! so all was good. I had a rest post dinner but that's normal for Christmas day. I had organised the day as much as I could  - I prepared the food while Nic worked on Christmas Eve,  I didn't bother with a big cooked breakfast on Christmas day as Nic and Eldest daughter (Emily) were working, Harley, Hope & her Boyfriend popped over to their Dads, so it was just myself Connor & our 7 yr old for a large part of the morning. Nic cooked Christmas Dinner when he got home, and we all went to my Moms for pudding and spent the evening there. I pledged to clean up the next day ...... but woke up to find that my gorgeous children had done it all that night. - I had gone to bed at 9pm.

Days 8 & 9: The scalp pain had gone - completely! I noticed a scattering of hair in the sink when I brushed it, but nothing major. The nausea had gone. The indigestion had gone. Apart from a slight cough and a runny nose I was completely fine. My temperature was completely normal. My appetite was poor though, and it was at this time that I realised that my food plan was a complete waste of time!! I planned to re-assess the following week. My plan would involve *Eat whatever you fancy, get it in!, *protein smoothies to get the good stuff in, *hydrate well, *increase protein in week 3 before the next cycle, *continue with coconut water & probiotic, *stop stressing about exercise until all this is done!.

Days 10 - 13: My cough got worse and I could feel it in my chest, temperature was still normal though. After a telephone call to the Oncology team and my GP, I had some Penicillin just in case anything was brewing. The  antibiotics worked quickly and I was fine. The scalp pain returned but not to the extent it was, it was in patches and just uncomfortable rather than painful, this was accompanied by occasional icy cold spots on my scalp, itching and tingles. My hair felt strange, dry and wiry - it was weird, it just didn't feel like my hair! I still felt very well, but the fatigue - wow! that started to hit hard every afternoon. I felt that my family didn't take this seriously though, because I just carried on as normal (which is another thing I need to stop doing). An open and honest chat was required at this point! As many Mothers will understand, having children who live away at university is fantastic! you miss them every day, but they become independent, they understand the cost of food, they live in their own mess and drunkeness so we don't have to ...... then they come home for Christmas! or worse .... Summer!!! They bring all their mess and drunkeness with them, lose the ability to cook, wash their own clothes and forget the cost of food!! Unfortunately for my little treasures, this time it happened in the middle of a hormone, fatigue fueled Chemo cycle - lets just say, a discussion was had ....... and then I went for some quiet time!! 

Day 14: As discussed on 'Hair today, gone tomorrow', the hair started to fall out today in handfuls, so my Lovely Nic shaved my head. Physically I felt great, psychologically it was emotional and there was a lot of anxiety.

Day 15 - 20: Physically feel great, although my appetite is still not what is was, I am managing to eat little and often and organising my meals before meal time has helped concentrate on getting the healthy stuff in. Fatigue is still something I'm having to learn to get to grips with. The hair loss was a steady shedding until day 19, then it was quite a dramatic fallout throughout the day, on day 20 I was surprised that I still had some fluffy bits and some stubborn patches - there is so much hair on your head! unbelievable!! - in other areas, eyebrows and lashes are still holding on, pubic hair has almost all gone, armpits and legs still need shaving - what a flipping joke!! 

I saw the Oncologist Registrar this week - Dr Happy, a very quick consultation to describe my side effects and for him to say he's happy for me to continue - I couldn't help thinking that I could have done this over the phone, but my medical trained self knows that he needs to see me properly to make a proper assessment.

Now to prepare to do it all again in cycle 2!  Chemotherapy is accumulative in your system, so the effects continue and build, so things may not be plain sailing all the time, but I can hope and pray that it continues as well as Cycle 1.

That brings my blog up to present day, so I shall update weekly to bring you all up to speed in this hilarious journey of survival - Thankyou for reading and commenting.   

 www.breastcancercare.org.uk

 www.macmillan.org.uk

 www.cancerresearchuk.org