Chemo Day - Cycle 3

Just when you think things are going okay, there's another cock up. I arrived at the chemo suite as 9.30 as usual hoping to start my treatment as soon as possible but no it wasn't meant to be. At approx 10am one of the chemo nurses tells me that there has been a mistake and one of my infusions wasn't ordered yesterday and probably wouldn't be ready until 4pm. I could either come back later and start all the treatments or have it the next day. Aargh!! I opt to have the majority of the treatments today and arrange to come back tomorrow for the delayed drug. What a nightmare, I've spent 3 days at the hospital this week!!

Clinic Appointment at the Berks

Went for my clinic appointment today and Heather came with me for moral support and company in case I had a long wait like the last time. It was starting to look like it was going to be a long wait so I asked if I needed to see the doctor. I wanted my blood results, and also to check whether she was going to organise a CT scan other than that I didn't really want to wait around for another two hours. As it turned out, they were trying to fast track a lot of people upstairs to the chemo suite as yet again there was only one doctor on duty.

I did wait about an hour and was seen by the Registrar. I mentioned the pain in my back and she examined me. She said it could be more bone pain and this would be made apparent on my next CT scan which she was going to arrange.

My bloods came back fairly good, especially the haemoglobin which was at a healthy 10.9 so no arrangements were made for a blood transfusion.

HB 10.9
WC 3.71
Platlets 111
Neutrifils 2.08

Pain in my back

I went swimming on Friday which I haven't been doing so much of lately. It's hard fitting it in when I've got so many hospital appointments or the line is in my port which means I can't swim. Anyway, I really enjoyed it on Friday but not sure if I've over done it slightly because my back is really hurting. I'll have to mention it to the Oncologist on Wednesday because every ache or pain has to be mentioned.

I went to bed tonight feeling really ill and in a lot of pain. Things change so quickly, last week I was having a good few days and now I'm in pain again and feeling rubbish!

Gradually feeling better

I've noticed over the last few days that my energy levels have increased and I'm able to do more activities, even if they are shopping and housework! Today in particular I feel really good. I have my usual weekly visit to the Sue Ryder day care.

The nosebleeds seem to have settled down for now. I think the chemo makes them worse and then they gradually calm down before the next cycle when they get horrendous again.

Blood Transfusions at the Berks

Following my low haemaglobin count last week I've been given another blood transfusion at the Berks. Three units this time which takes about 7 hours during which time I have a couple of visitors so it passes the time quite nicely.

Chemo Day - Cycle 2

After yesterday's farce in the Cancer Clinic I'm still a little upset but just want to get on with the treatment today. When I arrive, as usual the car park is absolutely jam packed and I have to park on the double yellow lines within the car park.

I check into the chemo suite and 9.30 and am asked to take a seat. There aren't many people waiting at this point but within an hour there is a steady trickle. I'm expecting to be taken in quite quickly because one of my treatments, Pamidronate, is in the fridge and readily available to infuse. Unfortunately this doesn't seem to be the case and other people are going in in front of me how arrived after me. Then Helene, the receptionist asks who signed me in which I'm not sure of her name and she says that my notes aren't upstairs (which is probably why I haven't been called through). She says they must still be downstairs and would I mind going to get them. I'm absolutely flabbergasted and say well not really. She gets a little huffy so I say alright if I have to.

I limp downstairs because my hip and leg still hurt and meet one of the nurses downstairs from the chemo ward collecting my notes. She's puzzled to see me and I said that I was sent down to get them (they should have been sent up after clinic yesterday but there appears to have been a cock up). As usual, it's farce, Jackie asks if I'm okay and I start getting a bit upset and ask who is the patient? I shouldn't be asked to run around looking for my notes. She totally agrees and sends me back upstairs at which point I'm taken into the chemo suite to start my treatment.

I'm so tired of hospital appointments and cock-ups. It's never ending. I'm back again next week for a blood transfusion.

Clinic Appointment/CT Scan results

I had an appointment at the Berks today for 10.45. Firstly to confirm that my bloods taken yesterday were okay for chemo tomorrow and also I thought the CT scan results.


3 hours I had to wait before being seen. Ridiculous. I don't normally say anything but felt that if I didn't everyone would be saying how bad it is to wait this long and I should have said something, so I did. Well, it didn't do me any favours, the Oncologist apologised in quite a moody fashion for keeping me waiting for 3 hours but she said she had 34 patients to see and she was the only Oncologist on duty. Then when I went to make my next appointment and the receptionist said 10.45, I obviously said okay but not that it meant anything and that I had to wait around for 3 hours today. She wasn't at all sympathetic and just said that is the way it is and I thought was quite rude to me. Suffice to say, I came away feeling quite upset but also because of the CT scan results .....


Firstly the Oncologist wasn't even going to say anything about the CT scan as there wasn't a copy on my notes, so if I hadn't mentioned them I could have gone way not knowing. Anyway she's given me a copy. Not good. There is another tumour in the liver and the possibility of a tumour in the lung. Too early to tell regarding the lung but the report says there is a 4mm subpleural nodule anteriorly in the right upper lobe of uncertain significance. This may account for the pain in my chest area but who knows.


I have to wait for 3 cycles of the chemo before another scan to see how things are working so it's possible that the chemo will deal with this new spread.


My bloods are okay for chemo but my haemoglobin is dropping again, 8.7 this time so they've scheduled another blood transfusion for Tuesday next week which means organising a blood match on Monday and then spending all day on Tuesday at the hospital. I'm so fed up of hospital appointments!


I'm obviously upset by this latest news, I've had a few tears but I'll bounce back and deal with it as I usually do, I just need a little time to digest it all.

Bloods:

Hb - 8.7
wc - 5.32
Platelets - 103
Neutrifils 3.01

Feeling a bit more normal

I seem to have had a couple of good days where I'm not feeling so tired or in pain. The tiredness however does creep in around 4-5 pm just about time for tea, so I need to sit down quite a bit when trying to make the tea.

The nosebleeds are settling down although I do still feel like I have a continuous cold. I assume this is going to be my good week out of the three week chemo cycle as I've got chemo on Thursday this week.