Week 3 Day 1 Monday Chemotherapy
10am start today and I have packed my flask with icepops to help my oesophagus rawness. I have been having trouble with increasing the quantity of Tramadol on my prescription from 60 - 120 a month (painkillers) from my GP and i am getting quite frustrated that they still have not got it sorted. I had a phone consultation with one GP but she was 'confused' with their system (not my problem!) so promised to sort it in two weeks...i had tried explaining 2 weeks would be too late as they would have run out by then but it fell on deaf ears! In desperation i asked at Chemo if they could do a top up prescription but they are not allowed to get involved unfortunately. Oh well.. the battle continues. As I have been really focussing on drinking 2.5 litres of water per day, my canula is inserted like a dream first time! I have decided that these Monday's are going to become my 'Spa Days!' Similar in that I can sit and relax with magazines, puzzles and music with snacks and drinks at hand. The treatments are just different. No pool or jacuzzi, but have a lovely comfy and adjustable recliner chair to chill out in. No massage, just lots of drugs to keep me relaxed! The Radiotherapy is where i get to sunbathe for 15 minutes too! Who needs a holiday lol!
On a more serious note, I have noticed my fitness levels are dropping, but i able to listen to my body really well and adjust accordingly. My phone can measure my pulse so i can see that a sometimes a short walk for me is equivalent to a serious jog for someone else.
When I got home today, I had the real munchies! I put away the click and collect order (Mark picked it up and filled the fridge stuff but i asked him to leave the cupboard stuff for me...so I can find it all again lol. I scoffed two donuts and then put a ready meal of a mozzarella and tomato pasta bake in for my dinner. I was to regret that later... around 2am!! I woke with the horrendous acid reflux and vomit that came up then went back down again before I could even get out of bed. Not good!! Some Gaviscon duly taken and I set up loads of pillows to sleep sitting up and kept the bucket to hand just in case. Luckily i felt a bit better when I got up.
Notes for sharing:
1. Ignore the munchies, drink water as a quick fix first then little snack size meals without too much of anything that brings acid for you. (we are all different)
2. Book in a Spa treatment (real or otherwise) to keep that positive mind!
3. Try to sleep during the day on Chemo (i never again but did try)
4. I am on Carboplatin and Paclitaxel - I had a slight numbness in my feet during treatment today but thought nothing of it. I rubbed them and they felt ok after. I have found out since that Paclitaxel can cause neuropathy which can be quite serious. A friend has experienced this and hadn't reported it, and had a couple of falls because of it. Report everything!, no matter how minor it seems to you!!
Week 3 Day 2
Early Radiotherapy days all week this week now. The oesophagus is getting quite raw now so looking at different foods to eat to help keep my fitness and nutrition up. For the first time, i didn't need to call the assessment bay on a Wednesday. I must be getting used to the treatments now. Had a slightly longer walk today in search of some elderflowers to make some cordial. Almost enough, need a few more tomorrow. Mark has also found a link to a closed facebook group for people on the same immunotherapy that i am moving on to called Durvalumab (Known as Imfinzi in the US). We have both joined it and hope this will put us in touch with others already on the treatment. Mark has done lots of research on the treatment but getting to actual participants has been difficult up to now. This sounds really helpful.
Week 3 Day 3
Early Radiotherapy session and Mark has heard from one person undergoing this that he takes a spoonful of honey both just before and just after the radiotherapy to help protect his oesophagus. I try this today and discuss with the Radiographer who agrees, even if it doesn't help, it can't do any harm. I just need to remember that when I get sticky fingers from the honey... DON'T lick them if you have just sanitised your hands! YUEK!!
Week 3 Day 4
Early Radiotherapy session and had hardly any sleep. Just 3 hours... plan is to go back to bed when I go home. I eventually only got another hour but I think it's partly due to the oesophagus causing me some discomfort. I have also uploaded my blood pressure readings onto my GP website so i expect a call back for that some time too. I also spoke to the prescription line again and hoping it is getting sorted once and for all... not yet though...
Week 3 Day 5
Early Radiotherapy session and had hardly any sleep again. Just 3 hours again initially but did get about 40 minutes before i had to get up at 6am. .. I did get another hour later but nowhere near enough. My oesophagus is definitely the issue now. Oncology appointment and blood test today. I also met some people today that create online canal Vlogs. The lady has been through her own cancer challenges and it was lovely to actually meet her and see how she is doing. The Oncologist is really pleased with me and my health. He told me my blood counts were actually better now while on treatment than on the 2nd June before i started! That really does go to prove that really looking at what you eat, exercise etc can make such a difference to how you can cope with this awful disease and treatment. Keeping health focused is definitely top priority! It also helps with maintaining a positive mind. He has prescribed me a medicine that I can swallow that acts as an anaesthetic for my oesophagus allowing me to eat better. I will collect that on Monday. He says I MUST maintain my nutrition so I have just bought a new little blender that I can keep handy to mash up food and smoothies etc. Power is the main issue on a boat and this is only 300watts so not too power hungry at least.
The Weekend
The weekend, as usual will be catching up on the sleep I have missed. Saturday morning i woke quite early with discomfort in the oesophagus and found that being propped up on pillows helpful and lie on my back rather than my side allowed me to feel a little better. Ice pops at 3am and 6am helped a bit too. Had a longer sleep again until around 11am...bliss! Breakfast was 'very cold' rice pudding from the fridge, followed by two Weetabix with slightly warm skimmed milk. Years since I had that!
Had a lovely call with with my daughter and granddaughter later and then followed with a little tidying up, Mark did the hoovering again for me. Charley (parrot) even had a bath!! (Seems obligatory whenever the hoover is out...apparently sounds like rain in the rainforest!)
