It's been a helluva week.....
...and it didn't get any better on Friday.
It was a busy day and started with a 9.30am appointment with the dietician to go over the dos and don'ts of Coeliac disease. Pretty much as I suspected, other than the level of rigour required. I need to be careful with what was referred to as "cross-contamination". This means apparently a separate cupboard for my gluten free stuff, separate toaster, butter, jam, chopping board, washing knives etc etc. A bit tedious, but all manageable.
Next appointment was due at 11.30am with the surgeon for another seroma drainage. As I knew I would have a little bit of time I had been the local farm shop on the way to the hospital earlier that morning and got a few cakes and gifts for various people around the hospital who have been helpful. So I set about distributing them and then bumped into one of the breast care nurses. She said that my surgeon was free as a patient hadn't turned up and rather than wait until 11.30 why didn't I come in now. Result!
My seroma needed draining again. A seroma is a fluid filled cavity that forms after surgery. I have already had some drained from under my arm (where my lymph nodes used to be), but this one now seems to have resolved. The new one has appeared following mastectomy and is very weird to say the least. It looks like my amputated breast is trying to regenerate. The fluid was duly aspirated and it instantly felt better.
Next on my busy day list was the one and only good thing in the diary! Lunch with my friend Heidi. Gluten free lunch. John Lewis was the venue of choice as it was on the way over to Oxford for my next appointment. It was lovely catching up.
Back in the car and a quick dash over to Oxford for my last appointment of the day at 2.30pm. This was my first appointment at a place with which I will become intimately familiar over the coming weeks - the radiotherapy clinic. This was my planning scan. This is needed a week or 2 before starting radiotherapy to line everything up with absolute precision and keep the areas receiving radiotherapy to an absolute minimum. First a chat with the radiographer. We covered side effects (red skin, tiredness, fatigue, damage to the lungs and heart, sun sensitivity, permanent skin colour darkening), and the scan set-up that would happen for the remainder of the day.
Because of the areas I am having radiated, I need to do a breath holding technique both for the planning scans and also for the radiotherapy itself. This is to minimise lung and heart damage. The first thing to do was get the machine set up so that it was ready for the scan. This involved laying in a kind of brace to ensure my body was kept in the right position, having a snorkel and nose peg put on and some virtual reality type glasses so I could see my breathing pattern. I then had to take several normal breaths and then a really deep inhale and hold for as long as I could. So far so good.
The next part was the actual scan. They need to use radioactive contrast for the scan, so to minimize the number of times I receive it my oncologist also wanted to have another look at my lungs for when we meet next. I have agreed to this as it makes sense, but I will probably choose not to know the results until we are back from Bognor. I just don't want to know and it doesn't change anything. They needed to have a doctor on site and apparently the doctor was stuck in traffic following an accident. I was told to go back to the reception area and make myself comfortable as he was likely to be a while. And he was - about an hour and a half!
Once he finally arrived I was cannulated for the second time this week. Then it was time to go back into the machine room for the actual scan. They got me back in the brace thing, but this time with no clothes on my top half. The room was freezing as apparently the machine is quite sensitive to temperature, so it wasn't long before I too was freezing. It's all a bit surreal as you are lying in the brace thing with nothing on your top half and several technicians walking around in the room making various marks on you, pointing lasers and sticking plasters on you. My last remaining scrap of dignity left me.
One thing I should say is that my position now was different to the first time I was in the brace. First time my hands/arms were by my side. This time, my hands were in a support above and behind my head. This was very difficult and intensely painful as I have developed something called cording under my left arm. This is pretty easy to see and essentially is a rope-like structure in the armpit that then runs all the way to the elbow, restricting movement. Hopefully it will go, but at the moment it makes putting my arm above my head painful. Sadly I had to be in this position for around 20 minutes.
So we did the first bit of the scan and then the radioactive contract was injected and it was time for me to do the breathing again and hold my breath. They have to be very precise, so I had to reproduce the exact breathing pattern from earlier, including taking the same depth of inhalation and exhalation and holding for the same amount of time. For whatever reason, I simply could not do this. I tried and tried and tried, but failed. I just could not hit the same depth of inhalation as previously. I suspect it was because my arms were now above my head and I was in pain, whereas I hadn't been previously. This was disappointing to say the least. Once it became clear that I just couldn't do it, the only thing for it was to bin all the earlier readings and re-set the machine and start all over again, but with my arms in the position they would be in for the scan. This was awful as it meant my arms would have to be in a position that was causing me pain for even longer. But there was no other option, so we started again. By the time we got to re-doing the scan the radioactive contrast had worn off so I had to have some more. Disappointing again, because this was what we were trying to avoid.
It was topped off by the team then saying once I was finally done that they weren't sure that the results were going to be passed by the doctor who needed to authorise them as they weren't great. He wouldn't see them until Tuesday. By this point I was completely done and just wanted to get home. I had been there around 4 hours. I suspect I'm going to be called back, which will mean yet more radioactive contrast and will also ruin the plans I have made for Briony's half-term next week.
So an eventful week with many ups and downs. I have to say that I am utterly exhausted from the repeated surgery and a busy week of appointments and revelations. I know I have several phone messages/text messages emails etc that I haven't replied to, but this week I am simply all out of give. Thank you for them all - I love receiving them and hope you don't hold it against me if I haven't got back to you. Let's hope next week passes without being quite as dramatic.
I'm off to get some well earned rest.
x
It was a busy day and started with a 9.30am appointment with the dietician to go over the dos and don'ts of Coeliac disease. Pretty much as I suspected, other than the level of rigour required. I need to be careful with what was referred to as "cross-contamination". This means apparently a separate cupboard for my gluten free stuff, separate toaster, butter, jam, chopping board, washing knives etc etc. A bit tedious, but all manageable.
Next appointment was due at 11.30am with the surgeon for another seroma drainage. As I knew I would have a little bit of time I had been the local farm shop on the way to the hospital earlier that morning and got a few cakes and gifts for various people around the hospital who have been helpful. So I set about distributing them and then bumped into one of the breast care nurses. She said that my surgeon was free as a patient hadn't turned up and rather than wait until 11.30 why didn't I come in now. Result!
My seroma needed draining again. A seroma is a fluid filled cavity that forms after surgery. I have already had some drained from under my arm (where my lymph nodes used to be), but this one now seems to have resolved. The new one has appeared following mastectomy and is very weird to say the least. It looks like my amputated breast is trying to regenerate. The fluid was duly aspirated and it instantly felt better.
Next on my busy day list was the one and only good thing in the diary! Lunch with my friend Heidi. Gluten free lunch. John Lewis was the venue of choice as it was on the way over to Oxford for my next appointment. It was lovely catching up.
Back in the car and a quick dash over to Oxford for my last appointment of the day at 2.30pm. This was my first appointment at a place with which I will become intimately familiar over the coming weeks - the radiotherapy clinic. This was my planning scan. This is needed a week or 2 before starting radiotherapy to line everything up with absolute precision and keep the areas receiving radiotherapy to an absolute minimum. First a chat with the radiographer. We covered side effects (red skin, tiredness, fatigue, damage to the lungs and heart, sun sensitivity, permanent skin colour darkening), and the scan set-up that would happen for the remainder of the day.
Because of the areas I am having radiated, I need to do a breath holding technique both for the planning scans and also for the radiotherapy itself. This is to minimise lung and heart damage. The first thing to do was get the machine set up so that it was ready for the scan. This involved laying in a kind of brace to ensure my body was kept in the right position, having a snorkel and nose peg put on and some virtual reality type glasses so I could see my breathing pattern. I then had to take several normal breaths and then a really deep inhale and hold for as long as I could. So far so good.
The next part was the actual scan. They need to use radioactive contrast for the scan, so to minimize the number of times I receive it my oncologist also wanted to have another look at my lungs for when we meet next. I have agreed to this as it makes sense, but I will probably choose not to know the results until we are back from Bognor. I just don't want to know and it doesn't change anything. They needed to have a doctor on site and apparently the doctor was stuck in traffic following an accident. I was told to go back to the reception area and make myself comfortable as he was likely to be a while. And he was - about an hour and a half!
Once he finally arrived I was cannulated for the second time this week. Then it was time to go back into the machine room for the actual scan. They got me back in the brace thing, but this time with no clothes on my top half. The room was freezing as apparently the machine is quite sensitive to temperature, so it wasn't long before I too was freezing. It's all a bit surreal as you are lying in the brace thing with nothing on your top half and several technicians walking around in the room making various marks on you, pointing lasers and sticking plasters on you. My last remaining scrap of dignity left me.
One thing I should say is that my position now was different to the first time I was in the brace. First time my hands/arms were by my side. This time, my hands were in a support above and behind my head. This was very difficult and intensely painful as I have developed something called cording under my left arm. This is pretty easy to see and essentially is a rope-like structure in the armpit that then runs all the way to the elbow, restricting movement. Hopefully it will go, but at the moment it makes putting my arm above my head painful. Sadly I had to be in this position for around 20 minutes.
So we did the first bit of the scan and then the radioactive contract was injected and it was time for me to do the breathing again and hold my breath. They have to be very precise, so I had to reproduce the exact breathing pattern from earlier, including taking the same depth of inhalation and exhalation and holding for the same amount of time. For whatever reason, I simply could not do this. I tried and tried and tried, but failed. I just could not hit the same depth of inhalation as previously. I suspect it was because my arms were now above my head and I was in pain, whereas I hadn't been previously. This was disappointing to say the least. Once it became clear that I just couldn't do it, the only thing for it was to bin all the earlier readings and re-set the machine and start all over again, but with my arms in the position they would be in for the scan. This was awful as it meant my arms would have to be in a position that was causing me pain for even longer. But there was no other option, so we started again. By the time we got to re-doing the scan the radioactive contrast had worn off so I had to have some more. Disappointing again, because this was what we were trying to avoid.
It was topped off by the team then saying once I was finally done that they weren't sure that the results were going to be passed by the doctor who needed to authorise them as they weren't great. He wouldn't see them until Tuesday. By this point I was completely done and just wanted to get home. I had been there around 4 hours. I suspect I'm going to be called back, which will mean yet more radioactive contrast and will also ruin the plans I have made for Briony's half-term next week.
So an eventful week with many ups and downs. I have to say that I am utterly exhausted from the repeated surgery and a busy week of appointments and revelations. I know I have several phone messages/text messages emails etc that I haven't replied to, but this week I am simply all out of give. Thank you for them all - I love receiving them and hope you don't hold it against me if I haven't got back to you. Let's hope next week passes without being quite as dramatic.
I'm off to get some well earned rest.
x
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