Week 6.5 Day 1 Radiotherapy - Warning -- long post!
So today, its a bit of a different day. As my 'home hospital' is Kettering but my treatment has been in Northampton (No radiotherapy available in Kettering) I need to go to Kettering to get my bloods done there ready for checking my kidney function ahead of my review CT Scan. I have had lots of mail arriving at my sisters house for me (my postal address, as you know.. boats don't get postment!) One is apparently a large assessment form for my benefits capability assessment. My Blue Disabled Badge has arrived too. Excellent news! We agree to meet in Halfords carpark for a socially distance meet up at 2pm. It was great to see her as she has been ill too after a gall bladder op that went a bit, shall we say, tits up? She has recovered well and will be back working part-time tomorrow, albeit at home for now. Good for her! She also bought me chocolates and bottle of bubbly for whenever I feel up to 'celebrating! Might need to leave that for a few weeks and even then will have to choose either tramadol of the bubbles? Ummm.... decisions decisions!
We head off to the nearby Kettering Hospital and try to find a disabled bay... umm.. busy! we think we find a spot and i wander off to the carpark office to register my badge. You can't park there I am informed!! Jobsworth discussion ensued and I leave to await a spot to become free ... all for 15 minutes!!
By now, we have been away from home for a couple of hours and managing on my water for now., i have brought snacks too, just in case Remember I mentioned about the importance of hydration but its only radiotherapy today so shouldn't be an issue. When i get to my radiotherapy for 13.50pm, we have the usual chat and treatment goes smoothly.
After, the nurse asks me about how i was over the weekend. We discuss my breathlessness further and she suggests calling a doctor over to chat about it. I agree and the team arrange it. I let Mark know so he doesn't worry and sit down to wait. Mark wanders off down to the Pharmacy to collect my prescription for more magic medicine (poor fella, he thinks his gout is coming back so it is painfully slow walk) but ithe prescription wasn't even there! Oh dear, I need to ask about this!
I am called in and wired up to the BP and stats machine, bleeping and whining away. BP went over 207 over something... heart rate 116. I was told even the 207 wasn't worrying them but the heart rate was. I told them i can reach 133 bpm after a 10 minute walk t the best of times at present. Even when the doctor arrived he asked 'what blood pressure tablets was I on?" He was shocked to hear I wasn't on any! I told them my upper left lobe was collapsed, had a small pleural effusion and my stage on my treatment plan. Also that my Oncologist was on annual leave. The long and the short of it is, they took me to the emergency assessment bay to prepare for an angio CT scan to check for blood clots. This can be serious but they were sensitive enough to just say they wanted to check me out for possible infection etc. This is the bit i find the hardest. In this unit, you are not told a lot, I had no idea how long I would be there, if Mark needed to go home or stay, nothing. Even when I asked, I was told, best he goes home but he refused as we have no other info or timeline. I also had to try to sort the magic medicine issue out too so ask the doctor when he pops back.
So, eventually, a nurse come over with a tray and cannulas and a BIG RED SEPSIS bag! OMG... is this routine or do they suspect infection? She tells me nothing and I get a bit panicky which isn't helped by Mark telling me "not to worry.. let them do their job" via text. Usual cannula problems (the big green CT scan one today!) ... remember very little hydration this afternoon! I am a bit occupied between having needles stuck in me and trying to keep calm, when I am offered a cuppa and then food at 5pm by the hospitality staff... I actually decline... bad move!! I still had no idea I was going to in for the long haul!
Eventually, on the third nurse, my canula was inserted in my left inner elbow, only took about an hour! (lovely bruise still a week later!) bloods were duly taken and sent for analysis. Eventually a lovely porter collected in a wheelchair to take me for a CT scan, this must have been about 6pm. it was quick, and was straight in and out as the dept was empty due to the late hour. Had a lovely chat with the porter about his job on the way back to assessment bay, it was his birthday! Happy birthday that man!
It took about 2 hours before i had much information but i did managed to call over the doctor to discuss my magic medicine issue which he promised to sort. it really is my lifeline at the moment. Around 8.30pm doctor returns to tell me there are not clots, great, the pleural effusion that has always been there seems unchanged, and they will give me antibiotics as a precaution (better given and not required than needed and missed) for 5 days, they are also prescribing my steroids, dexamethasone for 15 days but stepped down dose every 5 days. sounds a plan. I also need to take a stomach tablet daily to protect it from the steroids. They wrote me a prescription (on a the green ones like you get from the GP but handwritten) and added the magic medicine on it too. They also gave me all these drugs together just before I left the unit. Oh dear.... the stomach one is meant to be taken first, then 30-60 mins later the antibiotic and steroid, MUST be with food. I didn't know it then. As we drove home, we decided that as my cooker hob was broken, Mark would cook through some pasta and I would get some tuna, mayo and sweetcorn mixed ready for a fast meal, I was ravenous!!! Nothing else would do! No sooner had Mark left with my bowl ready filled with steaming pasta.....i threw my guts up in the sink!!!! Why did they just give me everything together!!! Not sure how much stayed in my system for only one hour but i didn't care. I ate what i could and headed off to bed!!
Week 6.5 Day 2 Radiotherapy
So, today we decide to go to collect the prescription at the hospital pharmacy, mostly because I can see a problem getting the magic medicine elsewhere as it is a specialist product. I head off to radiotherapy and discuss my trials and tribulations of the previous evening but at least I was found to be ok and they were happy with my condition. As I got back into the car, Mark told me the hospital won't fulfil the 'green prescriptions'! You have to use a regular pharmacy for them. Hospital prescriptions are usually just on an A4 page. Ah well, here we go. Cutting a long story short, two chemists later show we can't get the medicines without waiting up to 5 - 10 days for it! OK, my next plan of action was to call the assessment bay back and see if they can make my prescription out onto a hospital prescription instead. We agree this would be the best option in the circumstances. I tell her i will collect it tomorrow but she insists it must be collected today... partly due to the need for the steroids and the 'precautionary anti biotics'. Poor Mark has to hobble back to the car and drive the 35 minutes or so back to Northampton and all the waiting around that involves. I feel so guilty making him do it but he just accepts it. I add my meds to my medicine chart and make notes on the steroids of the dates on each dose to keep me straight. I can only take one dose today by the time I get them so that's just 4.5 days on 8mg daily rather than 5 as advised by the pharmacist. I have to now manage without the magic medicine so Mark suggests looking for the manufacturer to see if they have any supplies. In his work life he deals a lot with suppliers so it was a great idea to look them up. I find them but it was actually the supplier and I strike a good email communication with them about when supplies will be available. A few days later I get an email telling me the Pharmacy will have supplies on Monday, whoo hoo! not a day too soon!
Week 6.5 Day 3 Radiotherapy - Final Session and Ringing that Bell!
Today is going to be a good day, I hadn't really, rather stupidly, prepared for the emotional aspect of it all but just knew I felt happy to be able to have days at home without daily hospital visits. I had the Radiotherapy goody bag for the staff ready and had put it on beside the front door worried I might forget it. It was a duplicate of the one I sent for the Chemo team but had shiny strips in it to pretty it up. Another personally written thank you card written from the heart to them all too. I told them all the lovely things they did that helped me.
As Mark and I wanted him to witness me ringing the bell in person, he duly had done his lateral flow test, a thing he didn't enjoy... he was allowed to then accompany me into the waiting area. I was informed I would be in the TR1 area downstairs... i had seen that on my appointment list and I panicked... "is it the same team i asked?" Oh yes, it's just the day for this machine service so treatments have moved down there I was told. Panic over, I couldn't bear to miss seeing my team after all these weeks! We waited and Mark called the Canal and River Trust guy back who had called as we plan on moving the boats tomorrow now that I will be free to do as I please. He tells Mark that any time we need to stay longer anywhere, to just let him know. Such a caring organisation if you are straight with them I think. Usually, you have 2 weeks in one place maximum, then if you overstay, you generate an automatic email to remind you to keep cruising. Eventually, if they are ignored, it can affect the length of the licence they give you when you renew at the end of the year. Not worth it we reckon so really appreciate the support we have been given so far.
I hand over the goody bag to Steve, the radiographer who has been my rock from day one, such a nice guy. It is weird being in a different room and the machine is backwards to the one upstairs. Either way, it's the same settings and soon, I get dressed and leave my modesty radiotherapy gown/top (whatever you want to call it) in the cubicle... don't need THAT anymore! :)
I pass my phone to Steve to take photos and Mark gets the video set up on his. I ring that bell loud and clear... i did lose count of the tolls... meant to be three... I was just too excited.. who cares... I did it!!! Thanks are passed back to the team and Steve says... OK, I don't want to see you here again... in the supermarket...fine... but just not here! We laugh and Mark and I set off back to the short walk to the car. Almost as soon as I get outside, I need a hug! Nothing for it, I give Mark the biggest bear hug I can muster! Tears begin to flow like nobodies business, this I wasn't prepared for! Silly old fool, surely I should have expected this. We take our time setting off and the sun is shining. Not a day to forget I think and I am ready for a break and doing whatever takes my fancy for a while. I have posted up a pic, I am not sure if a video will load but I can try.
