Trip of a lifetime?

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Up until I was diagnosed with breast cancer my husband used to go to Chile to work for a couple of weeks a year. I say work but there was usually an element of sightseeing and fishing involved too. He last went in the spring of 2015, a couple of months before I was diagnosed. I never went due to having 2 school aged children.

So this year the kids are both (for a little bit longer) away from home so it seemed like the right time to travel to the other side of the world.

We flew to Santiago where my husband was to do some work for the first week. I shared an office with him for the first day so I could work but then decided to venture out into the city on my own.

Never having been to a South American country I was, before I went, unsure as to whether I would feel up to wandering around on my own. Santiago felt very safe. Like in all big cities you have to be aware of your surroundings but I loved it. Did the metro, cable car, funicular railway and walked for miles in the brilliant sunshine.

After the hustle and bustle of the city we flew to Punta Arenas. We have some friends down there and were using this as our base before leaving for Teirra del Fuego. The weather has gone from 29 degrees to 13 and rainy.

We took the ferry to Porvenir then drove 300 km until the road (a dirt road) ran out at Caletta Maria at the mouth of the Azzapardo River. We stayed in a 2 bedroomed hut with woodburning stove and one solar panel. Apart from 6 people in the other 2 buildings on the estancia there was no-one else for miles. Two days of fishing and walking in this amazing place.

Back to civilisation staying a fishing lodge on Lago Blanco – must have been about 20 people there – then back to Punta and the flights home.

Flying from Punta Arenas to Santiago then out of Santiago to London we flew the whole length of Chile in brilliant sunshine and the views were amazing. Quite a special end to an amazing 2 weeks.

Now this is what I call normality after cancer – roll on next year – I want to go back!

Why Chemo can run late

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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

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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).

Remembrance

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So when my son was in year 2 at junior school his teacher organised a remembrance event in the playground. When he was in year 4 he had the honour of playing the Last Post and Reveillie in front of the school which he continued to do until he left the school.

When he left some 10 years ago his younger sister didn’t want to stand in front of her peers and play so I was asked to. Every year since then I have played the Last Post in the school playground.

In 2015 I was contacted to check that I ok to play. I had my 3rd chemo on 5 November then stood – propped up by the fence – in the playground to play on 9 November. My biggest concern, given a windy day, was my wig. I feared it blowing off, which it never would have done, in front of 150 4 to 11 year olds. Luckily everything went well, although one member of staff complimented me on my hair (it being much tidier than usual) and, as she was an ex-hairdresser I had to tell her it was a wig.

Unfortunately that evening my daughter had an options evening at school and I nearly passed out at which point she and I got very emotional. Luckily she had great support by the school during my treatment.

On Friday I played my 10th Last Post at the school and tomorrow will be marching with my band and playing at a remembrance service. 

Hair Loss at Halloween

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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.

 

 

Boobs & Brass

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What is the connection with brass bands and breast cancer?

The answer is Boobs and Brass an all-girl brass band who came together in May 2006 for a one-off fund raising concert.

B-B-2160x1080-980x245[1]Well the one-off concert turned into 12 years of music making and fund raising and to date some £241,892 has been raised for charity – of which £206,900 has been donated to Breast Cancer Now.

My first encounter with the pink ladies was at Butlins in January 2010. Every January Skegness Butlins is “invaded” by brass bands. This time Boobs and Brass had a mass “Boob Blow” and some 370 players played together to raise money for Breast Cancer Now. My daughter, then 9, was I think one of the youngest playing that day and I also played cornet that day. I started playing with them on percussion in 2016 whilst I was undergoing treatment for breast cancer.

The band’s fabulous organisers Jane and Maggie have accepted numerous awards over the years for their fundraising including in 2009 an “Outstanding Achievement” award by Breast Cancer Campaign (now Breast Cancer Now), in 2017 the BBC Music Day Brass Band Award   and this year the Northamptonshire Community Award Charity Champion Award.

Unfortunately the band may cease after a couple of final concerts – as you can imagine organising something like this takes over your life. So on Saturday 13 October some 70+ of us ladies will be performing at Lincoln Cathedral and trying to get to that £250,000 donation target.  We will also be honouring the NHS in their 70th anniversary year and joining us will be the Lincolnshire Hospitals Band.

Before anyone asks, yes we know that men get breast cancer too and for this concert we have a male conductor. We have also had male guest players in the past.

and then there were two

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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!

Haunted by Memories

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2018 03 11_Liz_1753So I got a message from the hospital to attend my chemo briefing on 22nd. This meant I was free and able to go to the National Brass Band Championships in Cheltenham the weekend before. It’s a bit earlier this year (yes we have qualified again, this time in the 2nd section) – this weekend. I am very nervous as to how I am going to cope with returning to the same venue.

Last time it was very emotional as we didn’t know what was going to happen with the chemo, how I would feel/react, whether it would be my last time playing for a few months. After we played our conductor thanked me for being there to play (albeit a small part) and at this point tears were shed by quite a few people in the band – in fact I am welling up typing this.

This year rather than playing a small part I am playing what, in some bands, will probably be covered by 2 or even 3 people. I find it quite physically and mentally demanding. My son is helping out on percussion (he is normally a horn player) and I have told him my fears so hopefully he will keep it together and give me the hug I am sure I am going to need after playing.

Here’s hoping for good memories to replace the bad.

On an exciting note I have just bought a drum kit! We pick it up at the weekend after the contest. I am also on the count down for having the house back. I currently have my son, daughter and her boyfriend in the house – along with all their uni stuff. The boyfriend now has his uni house and is starting to move out, my son has had confirmation that he is returning and will be off next week and my daughter the week after. Peace and quiet will return – apart from the drums!untitled

September – A New year

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I think a lot of parents of school age children see September as the start of a new year. I usually buy an academic diary and start afresh in September rather than January.imagesSo 1 September 2015 I first met my oncologist. He talked me through the treatment path. 8 sessions of chemo to try and shrink the tumour then radiotherapy then a single mastectomy and reconstructive surgery.

Me, being me, I was back at work the next day. Some people I have met since stopped work on the day they were diagnosed. Whilst that might have been good for them I don’t think that would have worked for me. I needed my normal routine. I didn’t feel ill so why not go to work.

A week later and I was feeling frustrated waiting for a date to start the chemo.

Waiting again at the moment – this time to see whether my eldest will be returning to uni after doing a resit. Whilst the youngest is happily buying stuff for her first year he is in limbo not knowing what is going on. Fingers crossed for tomorrow.

On a sad note one of the friends I met through a breast cancer forum has been diagnosed with secondary breast cancer and another is waiting for results following biopsies after an annual mammogram. We have already lost two friends from our group of 27 due to secondary cancer. Secondary breast cancer kills 1,000 women a month. Secondary breast cancer is not curable. Secondary breast cancer does not receive the research funding it should. DmJrpBoXgAMrsCIThanks to Jo Taylor of abcdiagnosis for this fantastic info sheet

Results – getting on with life

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Robin Hood Half Marathon 2004

So whilst waiting for the next lot of results I continued life “as normal”. Decorating my daughter’s bedroom, depping for various brass bands, cleaning out the summer house and going back to work.

As far as most of my colleagues were concerned I had just been on holiday. I has only missed two days before my holiday (I was working 2 days a week during school holidays) and, due to cutting the holiday short, was back on the designated day. I had a few “handover” meetings and some chats with some colleagues to let them know what was going on. Then, feeling rebellious, bought purple hair dye on the way home. If I was going to loose my hair why not have some fun first!

So on 25 August 2015 it was confirmed that I had breast cancer. Treatment path to be 8 sessions of chemotherapy, radiotherapy then surgery. Appointment made to meet the oncologist next week.

Life goes on though – birthday party to organise for my daughter (hence the clearing out of the summer house). This turned out to be an excellent thing to do as it stayed tidy and has turned into our office – I am sat in it at the moment typing and spent many hours in here during treatment so I could continue to work remotely. It however it has transformed from “party shed” to “man cave”. My other half has installed a TV, speakers and various shed art. Latest installations are recent holiday purchases and he is going to be installing a weather station so he can see what the weather is doing – whilst sat in a shed in the garden!

A week of medical appointments followed – blood test for my finger, dentist for a pre-chemo check up (and filling) and opticians.

The birthday party went well. It was great to see my daughter singing and dancing in the garden with her mates.

This last weekend she was, I assume, singing and dancing again – this time at Reading Festival. Her first festival. Must admit I was somewhat jealous until the rain started! I, in the meantime, have started the “C25K” programme – couch to 5K. Whilst I used to run a lot – half marathons, 10ks, etc, due to first injury and then the cancer I have not run regularly for 6 years! So far so good – although only done 2 days so far.

 

Carcassonne
Robin Hood Half Marathon 2004

Oh and we’ve booked a holiday – just the two of us – a long weekend near Carcassonne – one of my favourite places. I have been there a few times on my own and it will be great to share it with my other half.