12 September 2023. Carrying on from the previous article, it is now the third day after the second TACE procedure on my cancer. The bruise from my groin extends a full 12 inches (30 and a bit cm) round the top of my leg, up the side of my bum and looks set to extend up my back. Though it is starting to go yellow in a few spots. The twinges and stabbies have now started a bit in my side and I know they will get worse and probably last a few months now. Getting tired easily, can nap at any time whilst eating, whilst at the computer, am not driving...!
20 September 2023. Whilst trying to protect the area to the side of my bits where a catheter was shoved up not quite a fortnight ago, I've strained the other side haven't I... So whilst sitting, jumping up and uttering "Oh, 'pon my word!" every now and then, I get a package from Talking Pictures TV with tickets for one of their film festivals that I booked, only to find I'd only ordered one ticket and not two. On the phone grovelling and paying for another ticket and have now returned the ticket for the centre of the front row and await whatever are the best tickets for two seats together. Sigh... I remember when my mind worked properly...
22 September 2023. Ok, so I'm back on track now thank goodness and healing well. Bruise is mostly yellow but still have an 8" x 1.5" strip with purple. Most afternoons involve a nap for anything up to a couple of hours, so often that I have given up and just go to bed for a few hours each afternoon. I have managed to get out of the house once or twice.
19 October 2023. MRI No.6 done and dusted. We found the hotel after a false start... There are four Premier Inns in Leeds and we saw the sign for one from the 4th floor of the car park after picking up the case. It was, of course, the wrong one and in the opposite direction than the one we were booked in.
The MRI machine surprised me a couple of times by saying "take shallow breaths...". So after a short interlude of panting I was starting to think I should breathe into a paper bag... Also the nurse said "I've seen you before haven't I?" So I thought here we go, she remembers me spraying blood all over the place, but no! She remembered either the face or the physique - probably the face because she didn't laugh... So now it's the usual wait for the results whilst trying not to bite my nails further down than the first knuckle... Onwards and upwards! Xxxx
21 November 2023. Tomorrow we are heading once more over to Leeds as I have a face to face with the consultant re the cancer. Not sure what to expect as I've already been told the last set of blood tests showed anaemia or low haemoglobin count again. Any more iron tablets and I'll be unable to walk past magnets...
22 November 2023. Back from the trip to Leeds. Mixed news as always. The last op had no effect. The two tumours haven't changed in size and are both still active or viable - meaning capable of being active. So the medical bods at Leeds are now meeting as a team to decide whether they should try the procedure again or, because the first one shrank the main tumour enough that it's just under the upper limit for radiotherapy, whether to try that.
The team meeting will look at where entry (target) points for radiation would need to be and whether that would zap any other parts that shouldn't be zapped. If they go for radiotherapy it could be done at Christies in Manchester which would knock an hour off each journey. Options would only be Leeds or Christies as it has to be done in a major cancer-specialising hospital. Not likely to hear now until near Christmas and nothing likely to happen until next year. Took a full 8-hour day that, from leaving house to getting back.
28 November 2023. I'm getting very dozy. I can fall asleep no matter where I am, at my desk, watching TV, in the doctor's waiting room. Miss Franny is having to nudge me every half hour or so...
1 December 2023. Blooming heck! Mid meal - CRUNCH! - sigh... didn't need that tooth anyway... This is the start of a few losses in the mouth, mainly on the lower right where one missing tooth has created a space for another one to gradually lean over, crushing another couple of teeth. Luckily they haven't caused any pain or discomfort so I've sort of ignored them. Our dentist got taken over by someone who announced I needed four extractions and two fillings before I'd even opened my mouth...
16 January 2024. Follow-up to the meeting at Leeds on 22 Nov. Apparently my details and scans have been forwarded from Leeds to Christies Hospital who are still to make a decision on whether radiotherapy is possible for me. Next step is wait for Christies to get in touch and presumably they will want an up-to-date scan to see whether the tumours have grown or not since my last scan in October. In other words: don't know nuffink... The only thing I do know is that I am still able to fall asleep within two seconds of letting my mind go blank...
8 February 2024. It's my first visit to Christies (or more formally: The Christie) Hospital just outside Manchester today. I am to have Stereotatic Ablative Body Radiotherapy which is high dose, precisely targetted and due to the high dosage will be completed within 5 treatments, one every two days. There are some risks and some side effects. The risk of not having it done is of course a touch more severe... Two visits before the treatment days to have scans done to see how much my liver moves about of its own accord. (It's always been a bit flighty...) Some sort of belt is used to limit my breathing during the hour long treatments - sounds fun to a life-long asthmatic. They estimate that treatment will start in March. Oh... and I have apparently shrunk an inch and a half in height since the last time I was measured.
I updated friends on Facebook and had a few questions directed to me about what on earth "Stereotatic Ablative Body Radiotherapy" meant. I responded:
SABR - stereotatic means two beams - all the better to make me glow in the dark. Hope they don't cross the beams! (see Ghostbusters for explanation)
Ablative means to reduce.
Body apparently means that just the thought of it has reduced me one and a half inches already
Radiotherapy means I'll go green and strong when narked... a bit like the jolly green giant... or the Hulk... or something... This would have been better on Facebook if I hadn't missed out the letter R in narked...
15 February 2024. Letters arriving from Christies on a daily basis (well, it's only been a couple of days...) CT scan and planning meeting scheduled for 8 March and MRI on 14 March. Expecting the treatment to start shortly afterwards.
8 March 2024. To Christies for a CT scan and meet with the oncology team to plan the raidotherapy treatment. We had met up with friends from school days a couple of weeks ago and Graham had very kindly offered to drive us to Christies whenever I needed to go. "I can't ask you to take me there twice a week!" I exclaimed.
"Well... you can..." came the calm reply. What an absolute gent. Already he had taken us to Leeds many times, giving up a entire day each time.
Anyway we got to Christies, found that there was free parking. I found the Radiotherapy ward ok, got registered, had the prep talk then decided not to risk the scanner without going to the loo first. Then of course I got lost in a long corridor as the loo was down a side corridor... I also managed to get lost coming back, as all the doors were marked "Radiation - Do Not Enter" so I didn't fancy opening the wrong door...
The bit I was worried about was the belt around the abdomen to restrict my breathing. The nurse assisting with the CT put it on and tightened it and I thought "oh... not so bad..." Then she said "I'll inflate it now..." It felt a bit like having a solid cricket ball pressed hard into your stomach making each breath a gasp. My chest looks like a noughts and crosses board, arrows everywhere (drawn on not shot at...) I got four tattooed dots, which would be used to ensure the beam would enter and travel through me from the right point and in the right direction. Two dots gave the vertical target and two others from side to side gave the horizontal. I had been warned the beam would touch the bottom of a lung and my heart. One of the dots was tattooed only an inch above a designated area of natural interest (that one made me wince!).
This was the tattoo on my chest - no you can't see the corresponding one lower down...
We got home mid afternoon, I was asleep in 15 minutes flat... The actual radiotherapy will start in just a few days.
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