Let it snow, let it snow, let it snow!
Quick post as conscious I have been a bit remiss in updating people recently. The main event has been that we have had about 6 inches of snow today so now don't need to go to Finland as it has come to us! There is a God after all....
A quiet Thursday and Friday and pretty uneventful. Personal trainer session on Friday and Dad and Step-Mum came down on Thursday/Friday. It was lovely to see them as I've gone from a million miles an hour to nothing and I do get quite bored! Not quite ready to go back to work yet, but it does get a bit dull staring at the same 4 walls.
I developed a bit of a rash on my chest on Friday, but it didn't itch and wasn't causing me any problems, so having spoken to the Chiltern's I was advised to carry on as normal. So I did! I was feeling fairly smug about the whole thing and felt that I was doing pretty well.
I have to admit, that I felt pretty good up until about 7pm Friday evening and thought I had had a very good ride of it. Went to bed early as was knackered and starting to come down with a cold. Nothing to write home about and my temperature was normal. Stephen came up to bed at around 10pm and woke me to get me to take my temperature. I was incredibly grumpy about the whole thing (me, never?!) and did swear at him. As usual, he persisted and was rewarded when the bloody thermometer proved him right and announced that yes, I did have a temperature. Bugger. Queue rapid phone call to the Chiltern's hospital to find out what the protocol should be. We couldn't get hold of them so decided that following the words of the nurse earlier in the week we needed to brave A&E at Stoke Mandeville.
So off we set in the freezing cold (de-iced the car first) and duly hit Stoke Mandeville at the prime time of pub kicking out time on a Friday evening. It was bedlam.......
However, as promised, one flash of my red chemotherapy booklet and they put me into some kind of isolation area. I say isolation area, but it was just a chair away from everyone else. They did try in fairness.
I feel I've been short-changed on the port-a-cath - I was sold it as meaning that they wouldn't have to stick any more needles into me, but this was met by blank looks by the A&E staff and they duly proceeded to canulate me. The only person who knew how to use them was somewhere else. Ho hum. My main concern was getting some IV antibiotics into me. I could see the anti-biotics in the triage room (next to the sign about infections in chemo patients) and was tempted to just make them up myself!
Now I rate the NHS and do think it is a national institution, so don't want a load of haters slamming my next comments. It was "somewhat disorganised" and no one seemed to know what was going on. I persisted and said that I needed IV antibiotics within an hour - they were duly given when we had been in the department 54 minutes. We then needed to wait for the results of my urine test, blood test and chest X-ray to see if they had found an infection. This was due to take around 1 hour. They moved me into a side room (no bed), stuck my infusion up using a bit of dressing tape (no infusion stands) and left us to get on with it. A bed did duly arrive.
A couple of hours later and I finally saw a doctor (IV antibiotics duly delivered earlier so my heart rate was finally starting to settle a little). He said that there were signs of infection, but not neutropenia (the one they worry about) and he thought it was viral. He then duly prescribed me some anti-biotics (for a viral infection?). I say prescribed me, but it turns out that the department had run out of the ones that I needed, so I needed to go home and then come back the following morning for them. I glanced at the prescription and realised that he had prescribed me the IV dose rather than the oral dose. This time I didn't keep my mouth shut, which I'm sure didn't win me any friends but hey, I don't care!
My body seems to have decided that the best way through all of this is just to sleep. Saturday I managed about 4 hours out of bed and today I have mustered around 8 hours out of bed. I have to admit I do feel better for it.
There have been a couple of changes - my eyebrows have started to fall out and I washed my hair last night and needed the hoover to try and clear up afterwards. I have such a lot of hair that it hasn't made any difference just yet, but it's days are definitely numbered. The cold weather has also made me realise how useful nasal hair is - I now have a constantly runny nose as the hair normally serves the purpose of stopping it dripping down your face. No one said this was going to be glamorous and they are right!
I had a lovely email from one of the Father's in Briony's class at school. He had been reading my blog and is a priest. His old parish was just off Edgeware Road where Jimmy Choo had his own little couture shop. Apparently they used to have tea together! He remarked that he thought that he would have been absolutely delighted to hear the story of me walking through the hospital wearing the shoes that bear his name. In the name of empowerment!
So today was half-marathon day. The truth is I was in no fit state to run it, but due to the large amount of snow it got postponed in any case!
Thank you once again for all your messages and good wishes - we have been completely overwhelmed with all your kind offers. I will get round to responding - just bear with us please!
I developed a bit of a rash on my chest on Friday, but it didn't itch and wasn't causing me any problems, so having spoken to the Chiltern's I was advised to carry on as normal. So I did! I was feeling fairly smug about the whole thing and felt that I was doing pretty well.
I have to admit, that I felt pretty good up until about 7pm Friday evening and thought I had had a very good ride of it. Went to bed early as was knackered and starting to come down with a cold. Nothing to write home about and my temperature was normal. Stephen came up to bed at around 10pm and woke me to get me to take my temperature. I was incredibly grumpy about the whole thing (me, never?!) and did swear at him. As usual, he persisted and was rewarded when the bloody thermometer proved him right and announced that yes, I did have a temperature. Bugger. Queue rapid phone call to the Chiltern's hospital to find out what the protocol should be. We couldn't get hold of them so decided that following the words of the nurse earlier in the week we needed to brave A&E at Stoke Mandeville.
So off we set in the freezing cold (de-iced the car first) and duly hit Stoke Mandeville at the prime time of pub kicking out time on a Friday evening. It was bedlam.......
However, as promised, one flash of my red chemotherapy booklet and they put me into some kind of isolation area. I say isolation area, but it was just a chair away from everyone else. They did try in fairness.
I feel I've been short-changed on the port-a-cath - I was sold it as meaning that they wouldn't have to stick any more needles into me, but this was met by blank looks by the A&E staff and they duly proceeded to canulate me. The only person who knew how to use them was somewhere else. Ho hum. My main concern was getting some IV antibiotics into me. I could see the anti-biotics in the triage room (next to the sign about infections in chemo patients) and was tempted to just make them up myself!
Now I rate the NHS and do think it is a national institution, so don't want a load of haters slamming my next comments. It was "somewhat disorganised" and no one seemed to know what was going on. I persisted and said that I needed IV antibiotics within an hour - they were duly given when we had been in the department 54 minutes. We then needed to wait for the results of my urine test, blood test and chest X-ray to see if they had found an infection. This was due to take around 1 hour. They moved me into a side room (no bed), stuck my infusion up using a bit of dressing tape (no infusion stands) and left us to get on with it. A bed did duly arrive.
A couple of hours later and I finally saw a doctor (IV antibiotics duly delivered earlier so my heart rate was finally starting to settle a little). He said that there were signs of infection, but not neutropenia (the one they worry about) and he thought it was viral. He then duly prescribed me some anti-biotics (for a viral infection?). I say prescribed me, but it turns out that the department had run out of the ones that I needed, so I needed to go home and then come back the following morning for them. I glanced at the prescription and realised that he had prescribed me the IV dose rather than the oral dose. This time I didn't keep my mouth shut, which I'm sure didn't win me any friends but hey, I don't care!
My body seems to have decided that the best way through all of this is just to sleep. Saturday I managed about 4 hours out of bed and today I have mustered around 8 hours out of bed. I have to admit I do feel better for it.
There have been a couple of changes - my eyebrows have started to fall out and I washed my hair last night and needed the hoover to try and clear up afterwards. I have such a lot of hair that it hasn't made any difference just yet, but it's days are definitely numbered. The cold weather has also made me realise how useful nasal hair is - I now have a constantly runny nose as the hair normally serves the purpose of stopping it dripping down your face. No one said this was going to be glamorous and they are right!
I had a lovely email from one of the Father's in Briony's class at school. He had been reading my blog and is a priest. His old parish was just off Edgeware Road where Jimmy Choo had his own little couture shop. Apparently they used to have tea together! He remarked that he thought that he would have been absolutely delighted to hear the story of me walking through the hospital wearing the shoes that bear his name. In the name of empowerment!
So today was half-marathon day. The truth is I was in no fit state to run it, but due to the large amount of snow it got postponed in any case!
Thank you once again for all your messages and good wishes - we have been completely overwhelmed with all your kind offers. I will get round to responding - just bear with us please!
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