Killing Me Softly - a long & difficult day at The Christie

Thursday of this week I was due at The Christie for my next treatment of Avastin. I also had an appointment in the morning with pyschooncology then blood at midday. I was due to see the oncologist an hour later and then start treatment mid-afternoon so it was going to be a long day.

I had missed out on training on Tuesday so I did not want to skip Thursdays session so I decided the best thing to do was to include it into my journey over to The Christie. I got up early enough fed the cats, made myself some breakfast, checked my email etc. and generally faffed around getting everything together that I would need for the day. I had let the cats out so before I could go I would need to get them back in so I was 15 mins late setting off.

I jogged over through the park but Princess Parkway was very busy with traffic trying to get into the city centre so rather than risk an accident I decided to jog over to the pedestrian crossing and then Wilbraham Road. I was looking for a short cut through the housing estate but instead I turned into a dead end end requiring me to retrace my foot steps. It took me about 56 mins to walk/run the three miles over to the hospital making me a little bit late for my appointment. Here are Thursdays stats:

I checked in at reception and handed over my letter for that mornings appointment apologising for being a bit late. I was then slightly confused when she told me my appointment wasn't until this afternoon and I was too early. I referred her back to the letter and told her that I was due to have treatment this afternoon and have my bloods done and see the consultant before then. 

Of course then I was told I couldn't have my bloods done at mid-day as they would still be on morning clinics. I have had this problem before so I decided to stand my ground and very firmly pointed out that my bloods needed to be done then and all she had to do was to fill out a blood form from my details on the computer.

However we still had the issue of this mornings appointment so I asked again but thankfully one of her colleagues intervened and told her she had to phone through to let them know I was here. By this time I was half an hour late going into my appointment.

I was meeting with one of the team from the pyschooncology team they can help patients cope with human side of cancer. I had felt really drepressed during chemotherapy and I was also very sad about the recent losses of some friends to ovarian cancer. The hour flew by I almost talked non stop, one of the issues we discussed was talking to my oncologist about my prognosis. I felt confused about my diagnosis I didn't understand what being low grade would mean in the longer term and I felt I was putting off some important decisions because of this.

Next I went and had my bloods taken when you have cancer they like to keep an eye on your blood count, liver and kidney function and also check your tumour (CA125) markers. I had an hour before my next appointment so I decided to pop into Withington village to run a couple of errands and get a bite to eat.

Then it was back to Outpatients to see the oncology team. Today I actually got to see my consultant he is always very positive and seemed pleased that bloods were good, blood pressure was normal, urine sample only a little bit of protein and my CA125 was falling so I was OK to have my treatment that afternoon. We also discussed having a CT scan in May to see how things were going as they like to do a scan every three months whilst on Avastin.

At the end he always asks if I have any questions. This time I decided to be brave and asked a direct question about my prognosis. I asked if the cancer would kill me or if I could die of something else and I also asked if it was possible to give some sort of time-frame and explained that there some financial reasons for this. The first part of my question was relatively straight forward he confirmed that the cancer would shorten my life. However he couldn't really put any sort of time-scale on this he mentioned that he thinks I might be platinum resistant. 

 

This is significant because carboplatinum is made from platinum and is one of the best tolerated drugs used in the treatment of ovarian cancer. The last two times I have had carboplatinum I have stopped part way through treatment because although the cancer stabilises it does not completely eliminate the cancer. This means that my options for treatment are now a little bit more limited I have always known that this might be the case as low grade cancers do not always respond to chemotherapy.

There was a bit to this conversation that I felt was a bit odd, I have always assumed that when the time comes I would get a bit of advance notice but I was told I would need to keep asking the question and to ask again in a years time.

I had another hour before my next appointment so I took my notes to Oak Road Reception, made sure they had my mobile number and went to the relaxation room to use the computers. The computers are so old and slow that is it far from relaxing. However I did notice that someone had posted on my time-line that there was an article about my fund raising in the Sale & Altrincham Advertiser. 

About 3 pm my phone rings and its the chemotherapy unit to advise that my treatment wasn't taken off hold until 2:30 pm so it won't be there until the last delivery at 5:30 pm. I am not best pleased but there is not much I can do about this except try and take my frustration out on the PCs that do not seem to want to co-operate with my frantic button pressing.


Eventually I was called upstairs at about 5:00 pm feeling absolutely shattered I was upstairs until about 8:00 pm and on the way home I popped into the supermarket for a bottle of wine - it had been a long and difficult day.