Hi all.
I had my scan in prep for my SBRT this morning. The 'micro-enemas' were nowhere near as much of an ordeal as I'd been lead to believe.
Essentially, I simply need to have my normal morning 'movement' (me & the nurses were having a good laugh about all of the euphemisms we use! and pointing out when we used one!), then, after about 30 mins to an hour, use the tube, and within 1/2 hour to 45 mins, I'm ready for another trip to get the last 'bit' out. I have been told to drink a lot to keep hydrated - this meant that my nocturnal wee visit frequency has increased and flies right in the face of advice from the forum but, hey - although frustrating, it's for the greater good in the end.
Well, yesterday, I picked my eldest son up from the airport as he was visiting us for a few days and I made a nice, healthy Thai style coconut & lemongrass stir fry with lots of green veg, mange tout, baby corn, peppers and spring onion (the more experienced amongst you will have spotted my rookie error here Haha!). Yes, there was a 'wind issue' and it was like someone playing a trombone but, I never thought anything of it as I don't generally suffer from 'windy-pops'!
So, in the morning I followed enema the procedure, which went well and, drank my water to hydrate,. Then jump in the car and go to the hospital oncology unit. When I got there, there was a woman who had just been told she was cancer-free and rang the bell. None of us knew this woman but all of us in the waiting room cheered and clapped, because we were so happy for her.
My name got called and I was asked to go to the loo for a wee and then, drink a measured quantity of water and wait 15 mins for it to get to my bladder, after which I was called and went for the scan. Incidentally, a CT scanner is well quieter than an MRI. Well, it turns out that my flair for healthy cooking is something I have to stop because there was too much 'gas' in my bowel! I was reassured that this is more the norm than not and most people have to come back for a 'second go'. I was given a sheet of paper with the message to 'avoid these foods' - which includes garlic, cauliflower, broccoli, cabbage - well, all the brassicas beans and pulses and chili and sent away with some low dose senecot tablets to take until my return visit on Wednesday morning. This is frustrating but, upon returning home, I looked into what i can eat as I'm a quite adventurous chef on the quiet. My wife and eldest son thought my expression of disappointment because of being denied all of the ingredients that I love to cook with was hilarious and both offered me box of tissues to dry my tears.
In reality, my wife has dietary restrictions because of her own health issues and, all I really need to do is eat the same diet as her to comply with the diet sheet with maybe not as flavorsome food but it won't be a big deal and, unlike my poor wife, who has this bland diet for life, it's only temporary for me.
Again, when I look at the big picture, all of this is nothing in comparison to the benefits of the treatment and the curative pathway.
A further update coming on Wednesday and fingers-crossed that I don't have to defer again due to another gas issue!
Cheers
Axel H
Magic that.. It takes me back -"don't eat that, micro enema, wind, the walk of shame.etc"
You are a natural at writing - there is a section on the Community where you can keep your own Blog - here's the link
https://community.macmillan.org.uk/cancer-blogs/b
Keep us posted, it's bring back memories (the ringing of the bell in particular).
Best wishes - Brian.
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Strength, Courage, Faith, Hope, Defiance, VICTORY.
I am a Macmillan volunteer.
Hi all.
OK, There wasn't much to report back on my return CT scan visit on Wednesday because ...... my bladder was too small! (Insert rolling eyes emoji)- despite going out to wait another 20 mins for my kidneys to do their thing, I must have been a bit dehydrated so, the liquid was used in my body and not sent through to my bladder!. So, a new appointment made for Monday (yesterday) and I made sure I hydrated regularly over the weekend. This time everything was as it should be - the tracker was inserted and a good scan carried out as all the 'bits' were the right size and in the right position. Now i know what works, I can reproduce the hydration levels required. So, I had my target tattoos done and an appointment for an MRI scan made for Wednesday (tomorrow). For those who may have some anxiety about this process, believe me, I actually fell asleep during the scan! (CT is much quieter than MRI) and I had a good laugh with the radiologist about being asleep helping me to stay still making it a good scan and asking for an anchor and a mermaid for my tattoos (all they were was 3 little +'s) :-). I felt really reassured by the team and their friendliness & professionalism. We were chatting about our similar experiences because, I used to be a Radiation Protection Supervisor (not medical) before I retired and I also have some med quals (FREC4 if anyone knows what that is, however, I don't pretend for an instant to be a medical professional!!).
Hope this helps reassure anyone going to go through the same process
All being well, i should get a week off before starting my SBRT. Anyhoo! I'll post an update after I've had my MRI tomorrow.
Best
Axel
Hi folks.
Apologies for the lack of the promised update.
However, here's a catch-up! The MRI was a good scan and provided all the required data. As I was a Mental Health first aider and a Drug & Alcohol Chain of Custody Officer for 20 years, I already practice meditation and mindfulness quite successfully I have some skill in being able to consciously go into 'chillax' mode and, yup! I fell asleep during the scan! I was then sent home for 10 - 14 days (but, still on the restricted diet (
haha!)) while the team were making a 3D model to practice on- . The team were/are excellent, they explained everything and - I'm one of those people that needs to know everything - and I mean 'everything', if I'm having any kind of medical procedure - for me, that stops me becoming anxious. They explained how all of the hydration and dietary requirements were so that my bowel & bladder would be the same size each time so that the rad shots will hit the tumor every time.. They said that this is critical because of the high doses being used - 36.5Gy to the prostate and 20.5Gy to the lymph nodes = 57Gy in total for each treatment! They impressed that it is crucial to only hit the cancer and not have any overshine because of the fear of damaging another organ. So, they want to practice, practice and practice so, they get it right first time, every time!
Well, I got a call yesterday (Tuesday 28) asking me to come in for my first RT treatment today (Weds 29). With this being the first one, I'm in there about an hour before so, I can be monitored and have a bladder scan to make sure it's the 'right size' and of course, the mandatory chat so I understand what's going to happen.
OK, details: I'm still on Zolodex and my next implant is due in about three weeks (see my post about side effects). I have a 'slow-flow' so the consultant doubled the dose of Tamsulosin. OK, I empty my bladder more completely now but every wee, still takes a lot longer than it used to. I was asked to stop the micro enemas and, reduce the mild senna from 2, to 1 tablet but, after the call, I was asked to up the dose to 2 senna again and resume the micro-enemas. I have been keeping up the hydration regimen too.
So, there's 45 mins before I jump in the car to set off to the hospital, I've had brekkies, hydrated and I've 'been', then - 30 mins later, I had my micro enema. I'm just waiting for the second loo visit now.
So, I'll pop another update on here when I return
Best regards,
Axel
Hi again all.
Well, that was a lot quicker than I imagined it would take.
No problem at all. Bladder was slightly larger than they would like but, they could still get a clear shot, without hitting anything else. And in a flash, it was all over. Just before I went home I did a feedback form and next thing y’know, I’m on the way home.
Best
Axel
Hi Axel H
As we said - it's just like "shelling peas"
Keep it up you are doing great and every positive report on this forum is great for moral.
Best wishes - Brian.
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Strength, Courage, Faith, Hope, Defiance, VICTORY.
I am a Macmillan volunteer.
Hello again.
So, Friday 31 May SBRT treatment No 2 has been completed.
I need to mention that after I'd posted about my first session, i started to feel 'something' in my abdomen. Now, it wasn't 'pain' per-se and, i wouldn't say that it was 'troublesome' either. But, there was something there that was - let's say 'noticeable'. other than that and a slightly increased frequency to have a wee - and I only noticed that because I'm monitoring for the feedback forms - otherwise I wouldn't have given it a second thought.
So, get up this morning and prepare for my second go at SBRT In the morning, I went for a second time and I felt like I didn't really need to do the 'micro enema' but, I did anyway. I had a good drink of water with my tablets - to fill the bladder then, a nice cup of freshly brewed coffee and some weetabix for brekkies before seting off for my second sesh. I got there early because traffic was unusually quiet. I went to the loo when I got there and before I'd had a chance to drink my (measured) 400ml of water, i was called in. I explained I hadn't finished so, I drank it and waited for 10 mins. Then, in we went. When they scanned it first time, my bladder was a little on the small side but, they let me lie there whilst they prepped everything and the second scan revealed that it was just at minimum and my bladder was clearly filling so, I was shuffled into the correct position and the process was started - all I had to do was relax and stay still. So, I practiced my meditation/mindfulness and went into 'chillax' mode whilst all the bits of equipment went about its business. Next thing I know is the team are back in asking me to pull up my 'trollies' as we're all done for today.
On Monday, afternoon I have my next session - halfway through the SBRT and, on Wednesday, I have an extended appointment because I've got a chat with the consultant and the research team too either before, or after my treatment.
So, there we are - a sneak peak into where I'm up to with my journey and I do hope that anyone who is anxious or a partner that is anxious, will feel a bit better after reading my posts.
Monday's session will no doubt just be a repeat of today's so, i'll report back after i've had my chat with the consultant and research manager.
Enjoy your weekend - whatever the weather - just enjoy it!
Cheers,
Best regards
Axel
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