Why Chemo can run late

I am not a late person. I hate being late and I hate things not running to time.

My first chemo appointment was for 2.00 pm so I arrived dutifully early to a packed waiting room, checked in and started to wait. After my 2.00 pm slot came and went I started to get twitchy. My 3.30 I was starting to get stressed. By the time chemo started at 4 I was in a state – we were running late, kids needed picking up, etc.

I had hoped that this was a one off and that the next ones would be on time. No such luck. One time I arrived and there was a delay due to someone having dropped some medication in the prep-room which now needed deep cleaning.

After my first docetaxel I assumed that the second one would be straight forward. Wrong. They started the infusion and I started to feel “different”. I couldn’t tell you what it was but something just felt different. I told my husband who spoke to one of the nurses and asked her to pop over when she had a minute. Well she didn’t wait a minute, was straight over, curtains drawn round me and I had a bevy of nurses giving me piriton. Apparently I had gone purple and was having a reaction to the drugs.

As a result of this the treatment proceeded slowly, and I mean very slowly. Instead of the treatment lasting 2 hours it took 4. I didn’t get out of the chair until 8 in the evening.

So if you are unlucky enough to be starting on a round of chemo please be aware that timings are approximate. If treatments start late, run over, etc, it is not the fault of the nurses or the admin staff. They dislike the delays as much as we do.

Busy, busy, busy

Well my plan to update this blog weekly has gone out of the window. When did life get so busy!

November and December is always busy in our house. Lots of music with brass band contests and Christmas concerts. This year, with the kids having left school I thought we would have less concerts to attend. However they may have moved away but they are still playing in various groups – unfortunately we only managed to go and see the one (Into the Woods). My other half has, so far, only agreed to help out one other band last weekend, but it was 75 miles away!

We also thought we would have weekends to ourselves but out of the last 6 weekends we have only had 1 without visitors – and they return from uni this weekend.

3 years ago was busy too. After 4 rounds of “FEC” 17 December was my first round of Docetaxel. I had been told this would be easier than the FEC, although to be honest FEC was easier than I had expected. The first treatment went fine and two days later I was playing in our annual Christmas concert. The next day however I started to feel strange. Aches and pains all over. It felt like I had little people inside me running around and hitting me with hammers. One minute the pain was in my feet, the next in my back, etc. Sleeping was impossible.

I was due to play yet another Christmas concert on the Monday but had to cry off. It was the only engagement with the band that I missed during the whole of my treatment. It was also going to be somewhat exciting for me as, unusually, I was  going to get to play the drum kit (normally I play the timps and tuned percussion). The rest of the family went off to a concert some 25 miles away. I was left in bed.

Feeling “off” I took my temperature. It was somewhat higher than I would have liked. I phone the help line who told me to go to hospital if it reached 38 degrees. I kept monitoring my temperature and it kept going up, albeit slowly. So do I leave my bed, drive myself 12 miles to hospital a couple of days before Christmas. I stayed where I was and luckily my temperature peaked at 38 and then began to fall.

I didn’t get the opportunity to play kit with the band for a few years after that but last weekend, due to the unavailability of our kit player, I got to play at the Albert Hall. OK so it wasn’t the Albert Hall in London (one day I will play there).

Hair Loss at Halloween

I can’t believe it is nearly a month since I last did a blog post – I thought I was doing well writing them every week but life takes over some times.

So back at the end of September 2015 I had my hair chopped from waist length to a “pixie” cut. I went to the local training college hairdressers and the young girl who did my cut was somewhat disturbed that I wanted so much cut off and had to check with her supervisor first. I did feel a bit bad after she spent so long on it that it would probably fall out within the month!

So the first chemo was on 24 September and I used the cold cap in an attempt to keep my hair. It wasn’t too uncomfortable but, I think, not as sophisticated as some systems. Other hospitals have a machine which pumps cold hair onto the scalp, mine was a neoprene hat which was stored in a freezer and had to be replaced every 45 minutes.

So how did the chemo affect me? Well I took my steroids and anti-sickness pills like I was told to. Had a headache for the first day and felt tired for a few days. A week after my first treatment I installed myself in our “shed”, logged on to do some work and went to band practice. Managed a few walks (only as far as my local shop) and did some sewing.

Day 15 and my eyelashes started to fall out. Day 17 and I had a tingly scalp and my hair started to fall out. My son kindly informed me, after spending the day visiting Loughborough Uni, that I had a bald patch.

My blood count was too low the day before my second chemo but luckily after a re-test on the Thursday morning the treatment was able to proceed. A week later and my daughter and I went to see the “wig man”. He was amazing and ordered me a wig which I hadn’t tried on but he guaranteed was “the one”.

27 October and I was asked to help out a local band at a contest on 31 October – apparently the wife of the guy they had lined up to play was having a mastectomy the day before the contest – couldn’t really refuse could I! So I turned up to a rehearsal the night before the contest wearing my new wig and no-one batted an eyelid. Must have been good (or they were too polite to say anything).

So Halloween, not something I “celebrate” and I am at the barbers first thing in the morning before leaving for the band contest having my head shaved by a pregnant witch.

This weekend we were going to go to the band contest to have a listen this time (I played for them again last year and won!) and to go and see my mum for the weekend. However a telephone call from my daughter wanting to come home put paid to that. We have not seen her since she left for uni. She came home 2 weeks ago but we were away in Yorkshire so didn’t see her. (We were going to go to Carcassonne in France but, unfortunately, due to the devastating floods they had there we did not feel it appropriate to go).

 

Our replacement trip to Yorkshire was very relaxing and I managed to catch a beautiful carp.

 

 

and then there were two

Such a busy few weeks.

As I mentioned in my last post we returned to Cheltenham last weekend. This year we only managed 13th (although in a higher section) but I was pleased that being back somewhere which had such strong associations to chemo didn’t mess with my head..

Last Wednesday my eldest returned to uni ….

Saturday the youngest’s boyfriend moved to his uni house …

yesterday my baby went to uni for her first year.

For the first time in nearly 21 years there are just the two of us in the house.

Three years ago today however was my first chemo session. My appointment was for 2pm so we agreed that the kids would go for coffee after school choir and we would pick them up around 5pm. How naïve were we! Still in the waiting room at 4 my husband sent them a message “Delayed at hospital, get the bus to N”. He didn’t bother to tell them that as at that point nothing had been done so they of course started to panic.

By the time they tried to get a canula in me for the FEC I was in pieces – more worried about my kids than what was going to happen to me. I nearly decided against the cold cap as I was worried that it would delay my already delayed treatment but was persuaded to go with it.

We had tickets for a concert that night but I had decided not to go, not knowing how I would react to the drugs. Once the treatment was eventually over we dashed home and husband went straight back out to meet the kids at the theatre. By then my youngest was completely distraught. Luckily some members of our band were also at the concert and I shall be forever grateful to them for looking after the kids.

So there I was, at home, on my own, after just having had my first chemo. Luckily no immediate side affects although took some anti-sickness medication before bed.

So now rather than my daughter worrying about me it is how it should be, me worrying about her. Hope she made it to her 9 am this morning!