Hi I hope you find my experiences helpful. Try to ignore the minor typo's, i am usually finicky about them myself but these days find it a little tedious if the spell checker doesn't get involved!
A little about me.
I am Sally and live on a narrowboat called 'Demesne' (Pronounced 'domain' to be politically correct but I initially learned it as 'Dem- es-nay' which has kinda stuck...sounds nicer too!), means 'homestead' - and 'master of the estate'), ships pet is Charley (she) the African Grey. Although in the picture, I was moored over winter in a marina (can you see the ice), we are now on a temporary extended stay mooring on the main canal line. It allows us a bit more freedom and change of scenery occasionally too. I live alone in my boat although my partner Mark, lives on his and moored right behind me so I have lots of help and support whenever I need it. Safety in numbers too! We have been together for almost 19 years, both with adult children from previous relationships and no... we don't intend getting married...we love things the way they are.
The first day of treatment was preceded by a blood test and a 24 hour urine sample the week beforehand. Effectively, you collect a 2.5 litre container from the pathology department then take it back after the 24 hour sample is collected (full and clear instructions given). I handed it in when i had my pre chemo blood tests on the Friday before the Chemo scheduled for Monday.
Day 1 21st June 2021
Woke every hour so probably a bit tired and anxious. Got to the car feeling very breathless after carrying my day bag. Promptly burst into tears. I felt it was all the waiting and this was finally it! Happening at last. Many bubbles later every time I met a new person which didn't do much good for my extremely high blood pressure which was monitored throughout the morning. Everyone was lovely, including the fellow patients. Tip, get organised before you get your catheter inserted, Put stuff you want close to hand like drinks, snacks, phone, headphones etc. First thing (my appointment time was 9.30am) is the chat with the nurse, then catheter inserted ready to take anti sickness and steroid etc. after a 3rd blood pressure check the attending Oncologist came to see me.. more bubbles! She prescribed two little blue tablets as a temporary measure to bring my blood pressure down with advice to contact my GP to manage it for the future. The nurses came to give me my Chemo but i had to tell them i was being monitored for blood pressure... they quickly went to check! After 15 minutes from taking the tablets it was down to 143/71. They then were finally able to give me my chemo (Carbo/PAC) around 12.30pm. Somewhere along the line i nodded off so some of it is a blur. You are given saline in between the two chemo drugs. Total time on chemo drip was one and half hours i think. Felt fine if a little tired and light headed at times and although I had took lots of food and things to occupy myself, they didn't get much of a look in as everything is so new and you are high alert mostly even though the place is very relaxing. I was given my meds to take home and they were clearly explained and notes made on them to help me.
Around 3.30 - 4 (ish - this is the blurry bit) I was told i was all done and could wander round to Radiotherapy for my first treatment. On my previous oncology phone appointment he told me because of the position of my tumour in the lymph nodes and the lung, my duration and Gy's was being reduced from 6.5 weeks (66gy's) to 6 weeks (60 Gy's) When i got to Radiotherapy they still had the original plan so they got my Oncologist down to talk to me. Apparently, his team had worked out that it was actually safe to revert to the higher dose plan... good stuff!
The Radiotherapy team were fabulous! So attentive, supportive and even learnt that my actual name is Sally (my official name is Carol Sally Anne but out of all dept.'s so far, they are the only ones personal enough to greet me subsequently with Sally! The machine looked very big and scary but it was explained to me and was soon over (15 minutes) I almost fell asleep! After i finished, as it was getting late, i had called my partner to collect me as i had left Chemo and still hadn't arrived when i left Radiotherapy. I walked back to sit and wait and the receptionist was just leaving. She told me they are about to lock up but waited with me until i was collected... well over and above!
I felt mostly ok and less emotional by now, made a quick ready meal myself and my partner spent the evening with me filling in my meds book. I still got it wrong! I took the steroid along with my pain killers - whoops, it was JUST the other anti sickness i should have taken. Only realised at day 2 when i never had enough to get me through day 3! It worked out ok though.
Early night, wakeful on and off but felt fine.
Day 2. 22nd June 2021
Radiotherapy day so much easier. On the way home got a call to book in for an Oncology review tomorrow over the phone. Partner came round to boss me about doing bits and bobs like feeding and cleaning out the parrot, did my blood pressure and checked my meds etc. Still never realised about the steroid at this point! Radiotherapy went without a hitch, it was lovely having such a short appointment. Missed my daily walk due to schedule but felt good with a few stretches etc. lots of family communication and reading up all the stuff given in the cancer treatment record book. Filled it all in too! I also decided it wise to pack an overnight bag just in case i have to call and go into the emergency assessment centre. A bag prepared is one less thing to worry about i think. Nice to have your own PJ's etc. Felt good all day, almost too good - it was surreal, perhaps the steroids have a hand in this! Went to bed and realised i had a bit of a flushed face from the sun...whoops, stronger than i thought at 4pm when I sat on the front deck for a rest. Note to self- lotion, face away from sun and get that UV umbrella the beauty nurse suggested.
Day 3 23rd June 2021 Early Radiotherapy day (8.15am)
Wakeful night. Woke at 4am and never got back off to sleep. had a snack and a cuppa and played on laptop creating a meds chart. My body temperature was a bit low today, took it again 30 mins later and just got over the essential 36 degrees. Temperature is usually lower in the mornings and it was cool start. On the way to Radiotherapy I decided to call the assessment line just to make sure and was reassured that it would be fine once she took all the details but to call back again if worried. Told them at Radiotherapy but how I felt really well and they were happy to give me my treatment. It was nice to see a nurse I had met previously in the pre assessment who was helping with my treatment today, training I expect. All over in 15 mins again. Just my review later and the rest of day is mine to do as I please, or so I thought!
Did our usual routine of BP and sorting out the parrot, then had an 'official' breakfast. (7am isn't breakfast time at my place!) Chilled out for the morning then set up for the phone call. I live on a boat so rely on mobile signal, which is usually fine, especially when all doors and hatches are open like today in this gorgeous weather. No call was forthcoming so i waited the obligatory hour, then called them only to get an answer machine. Message left and as we were now late for out walk and lunch hadn't happened we reorganised ourselves to eat then get that walk in while i felt keen enough. I took my phone, notes etc with me but nothing occurred. Had to cancel a WhatsApp video call with my daughter and granddaughter due to having to sort out this damned appointment. Upon return from our walk, I rang every number i could, tried different line options etc, as you do... in desperation i rang Radiotherapy as they seem to be so ready to help and already know me well. Ali was fab! Told her about my mix up with Chemo tabs that I had hoped to discuss with the Oncologist during the appointment and she would try to find out why i never got the call. She rang me back and had referred me direct to Chemo CNS nurse who called back and after checking with a colleague, agreed i would be fine so no problem. She just said to take the slower acting anti sickness if i began to feel sick (as per instructions) and if it didn't do the job, to then call the assessment line. I also asked about my pre chemo blood test as last week i had it on the Friday ready for Monday but was again reassured it can be done on the day as they will mark it urgent and get it back in plenty of time for treatment to be approved. All sorted then but still no idea about my review appointment. I hope that's sorted tomorrow.
So my 'please myself day' was mostly lost in messing about. Even my GP appointment hasn't responded in the allocated time. That was easy though, two clicks in my app and sends a note to practice to chase it up.
BP today we notice is creeping ever higher, (no wonder after today really) and temperature only made exactly 36 degrees tonight! Ho hum.
Hoping for a longer sleep as I haven't had a nap today and remember... no steroid to wake me up, 4am was a long time ago! Radiotherapy at 8.20am tomorrow so no lie in either. I did have to take the anti-sickness tablet though at bedtime...
Day 4 24th June 2021 Early Radiotherapy day (8.20am)
Awake early... 3:30am! This is getting silly! I get up and have a cuppa and a snack and try messing about on the games on my phone, then decide I would catch up on Corrie! Because of the football all soaps are uploaded early so i watch tomorrows... strange! Umm... still only 5.30am so another cuppa then decide to do my click and collect order for my partner to pick up when i am at Chemo on Monday. We have decided that's the better option as delivery to a boat can be complex as you can imagine. Tesco van drivers don't understand canal bridge numbers! We get into Northampton in good time and discuss blood pressures but decide its actually understandable in the circumstance that we are both a bit higher than usual. AS i wait to go into Radiotherapy a GP calls me on the phone and advises me to monitor and record my BP for 2 weeks and then email it to the surgery for checking. That's one thing sorted then. I ask again about the regime and my Radiotherapist suggests popping over to Oncology to get it sorted out. Long story short, I got a call from the Assessment Centre as a follow up from yesterday who very kindly got me through to Chemo who then told me what i needed to do. I could book the blood test on the phone for Friday which is needed 'EVERY FRIDAY'. Oncologist will call me on Friday each week too.
Today I had that please myself day at last. Video call to my granddaughter too who was all excited after her visit to 'Big School' to meet her teachers. Most of her friends are in the same class, Parrot Class! Did I tell you I have an African Grey Parrot called Charley? My granddaughter loves watching her videos, even though she has never seen her in person.
Day 5 Lie in today as Radiotherapy in the afternoon, yay!
Nope!! I was awake early again, partner took his boat for early morning cruise to top up his water tank, this way he doesn't lose his spot as no one else is around. I waved as he passed me and then again after he turned around. I did however not get up and managed to go back to sleep for a couple of hours. Steroids must be truly wearing off. 11am call from oncologist came at 10:30am... just as I was listening to Popmaster on Radio 2! Typical lol. Discussed my week and he told me he had looked at imaging showing that the fluid in my left lung had increased somewhat and that they would most probably have to do another CT scan to realign the area targeted by the radiotherapy. He said it is vital he wasn't 'missing' the tumour and hitting the good tissue instead. He is keeping in touch with me every Friday. (Strange how my letter says next Tuesday though) All will be revealed no doubt.
Blood test at 2.30 and then climbed that awful ramp to Radiotherapy, puffing and blowing like a whale! To anyone not already breathless, they are just slopes... but how come if I go off to Oncology (halfway up)...I have to take a lift to the ground? Strange building! Last one of the week so looking forward to a weekend off. No walk today as felt a little washed out.
Weekend - I think mostly this was sleeping! Long night sleep although woke a few times, ate well, Saturday had a short walk, Sunday a longer one. Caught up with family on the phone, sorted domestic chores between us and did some research into Immunotherapy too. By Sunday evening, I was feeling almost 'Normal' (if I was ever normal that is!) Made a Sunday dinner and even made a spare for Monday when i came home.
Treats I bought this week include:
UV Sun Umbrella for those hot days to protect my skin.
Neck pillow - been getting sore shoulder - not sure if it's muscular or wind!
Mini fans to help with breathlessness as per the Macmillan leaflets.
