Week 5 - Day 1 - Chemotherapy 'Spa' Day
Well, the weekend was real scorcher and had woken up both days with a headache. Perhaps a little dehydrated due to sweating and the heat. Although I know drank plenty, it evidently wasn't enough in that heat as two nurses tried and failed to insert canula's into my hands for my drips. The third nurse was more successful but had no choice but to use a vein near my wrist which I eventually realised whenever i moved it even a little, the drip would stop. The result being that i could not do puzzles or even grab my lunch without everything stopping. the nurse said... if you want to stay all day.. keep moving!!! Ah well, sleep and reading it is then! Thankfully, once we realised the best position to place my hand in, things began flowing much better. As the canula was in my right hand, trying to text anyone using the left hand was a little tricky!! Sitting perfectly still isn't really me either!
At least I have only one more cycle to go now, and I begin to think about a gift pack to bring in for the wonderful staff here. perhaps something they can share at their breaktimes, nice biscuits or something. Best stay away from chocolates in this heat though!! I will order them in my Click and Collect order I reckon. The bonus of being in Chemo today is the delicious Air Conditioning...much more comfortable than being in the heat of the boat.
I have picked up a little weight gain today, just half a kilo but I doubt that is relevant as I have been VERY constipated! Either way, at least I am fairly stable in the weight overall and can afford to lose a few pounds anyway.
I feel really well generally and the drugs help to some extent i think but even so, because I am really focused on eating well, going for short walks when I can and monitoring myself, it really does pay dividends in my overall health. A positive mind obviously helps greatly too. My laidback lifestyle must have an impact too. I am still counting my blessing and I have even managed to maintain my hair! I have a haircut booked tomorrow with Debbie in the Macmillan salon.
Later, after Radiotherapy and Mark comes to collect me, i grab my pasta that I missed at lunch time and scoff most of it on the way home... I was ravenous! When i get back home, I am quite tired so because i have just eaten, can just chill out for a while.
Week 5 - Day 2 Radiotherapy
Today is the early water top up run for the boat. 5.30am Mark arrives and we set off up the canal... its is funny as we pass one boat.. his side hatch is open in his bedroom... he pops his head out as we pass.. shaking his head!! Hee hee.. its so refreshing in the early morning coolness.. much better than doing it in the heat I think. I take a chance for a shower with all that lovely hot water and we get back to the mooring by 8.00am and can have brekkie.
Today after radiotherapy I go for my haircut. Debbie is lovely and we discuss hair care and how it may have thinned a little but shows no signs of actually falling out. With only only more Chemo treatment to go, she thinks it is unlikely to change now. She did tell me though that immunotherapy may affect the quality of the hair rather than losing it. She suggested using a silk or satiny pillowcase which creates less fiction when moving about in bed and also the best products to use. I am already doing most of what she had suggested previously so fingers crossed, my hair shouldn't suffer too much. I really had thought hair loss was a given on Chemo!! A point i discussed with my eldest daughter later this week. Sporting a nice short style, showing mostly my natural colours too for the first time in years, we head off home. Sooooo much cooler now that all that mid length hair had gone.
As today is a steroid day... I have things planned to do! Apply for Universal Credit amongst other things! Wow! what a test all those forms and questions are! Being self-employed things are a little less straight forward but I think I have a good idea what I need to do now. Tried a few milk shakes too since i over ordered on milk this week! Whoops!
Week 5 - Day 3 Radiotherapy
Mid morning Radiotherapy day today and yet again, it's really busy, both in the car park and the Radiotherapy suite. At least I had a slightly longer sleep today, 6am... better than 4 am at least. I also get a text a about a call tomorrow for Universal Credit (UC). That will be interesting! I am usually on the other side of that as in my work life, amongst other things, I am a Careers advisor and often hold advice sessions and help them with CV's for job seekers and those on benefits through DWP. The weather is still warm and humid and getting really difficult to go out in. I tend to sit inside with the electric fan on my footstool oscillating to keep me and the boat cooler. Hand held fans are great too when the breathlessness takes hold. Best to sit slightly forward with the handheld fan blowing right into your face and mouth. Lovely! Plenty of cold drinks and ice pops work well too.
Week 5 - Day 4 Radiotherapy
Another mid morning Radiotherapy day, almost as busy again too. Later back home, i have that Universal Credit phone call to deal with! Have you ever had to go through those? This was my first ever so I found it quite a challenge even though i had done a really good job filling in everything it asked for.. and more. Being a boater, self employed and with a health condition changes things quite a bit! 'Peter' the workcoach seemed nice but why on earth do they always start with your 'Commitments' to looking for work first before they have even read your claim and personal circumstances? Once he then realised I am a cancer patient going through current treatment he took on that awful pitying tone I am beginning to see more frequently. I thought it was going to start me off emotionally, which it did partly but managed to keep it together enough to find out what I needed now was a 'fit note' from my GP. Macmillan had not told me about that, just that I needed to ask for the UC50 Work Capability form. They are NOT the same thing! I have now gone through my GP online request process to get my fit note (for at least 3 months initially) You are still allowed to earn and/or work so you have nothing to lose by being signed off.
Points for anyone not signed off work yet.. Do it!! I was self employed and had not realised I needed to 'go on the sick' If I had, I wouldn't have job seeker tasks to commit to now. Hopefully, once I get this from my GP next week, it will take me out of those, for now at least.
After this stressful appointment, i had a bit of a rethink about the Macmillan grant that I had been told about. I had been informed i was eligible for one, probably for clothing due to weight loss so i gave them a call. Just a few minutes later, the lovely lady asked me for my bank details and informed me it will be in my bank on Monday! Wow!!... it was such a shock that it was so easy...especially after the hoops I had just been through with UC! I advise anyone hesitating applying for the grant... ask, you may be surprised too!
Week 5 - Day 5 Radiotherapy
Oncology call first thing thing went fine, he will chase up my letter about my CT scan on 18th August as i have yet to receive it. The following day he will discuss results with me, I ask if can send the file to me as the appointment is over the phone. He says he will. The MDT meeting will follow immediately after that call and he will then let me know if i have been approved for the immunotherapy treatment. If I am, i will begin within 2 weeks of that date. Fingers crossed!
Final treatment day this week, all went well and i had a much later sleep, 8am! I had a wakeful period in the night but still nice to lie in for a change. Afterwards, I get a quick call about UC housing info and then i am free to enjoy the remainder of the day in peace. It is a little cooler today and expected to be more bearable all weekend too. /looking forward to that.
The weekend was quiet and although I felt a bit shaky at times, there was nothing specific i could pinpoint causing it. I think it's the withdrawal from the steroids. Will ask on Monday if the time period would last that long.
