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!

Haunted by Memories

 

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

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

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.

 

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.

More biopsies

So we are back from our holiday in Seattle had a great time but jag lack is the pitts.

Back to 2015 and our holiday in France. Whilst away my son received his AS results. We had planning on going out to eat that night but the results were not good so we were all in a bit of a funk. My finger reached a crazy size so my husband had to cut off my wedding ring. Unfortunately it still kept getting bigger and meant that riding the bike was painful. The day before we were due to leave our gite (a few days earlier than originally planned) I phoned my doctors for an appointment and, amazingly, got offered one for the next day. Had to explain that I would still be in France then so could I come on the Thursday. Arrived home late on the Wednesday night.

Doctors first thing on the Thursday. Appointment was with a newly qualified doctor who didn’t have any idea what was wrong so she called in a colleague – it was the doctor who originally referred me to the breast clinic. He was apologising for the fact that I had cancer, he was convinced it was a cyst. I was just thankful that he referred me when he did. A few tears were shed at this point. No further forwards on the finger though.

Back to the hospital in the afternoon. Still nothing concrete. Biopsies of both breasts were inconclusive but they wanted to re-do the right side with a right handed doctor (the last one was left handed!). They did however discuss likely course of treatment.

Before holiday it was suggested I would have operation then hormone treatment, now they have decided on chemo, operation and radiotherapy but still not found the source of the cancer. Another wait for the outcome of the biopsies.

This year’s holiday was definitely not the normal for us. Usually we load up our estate car with fishing kit, bikes and musical instruments (yes we have been known to take cornet, French horn and euphonium on holiday) and stay in a gite in rural France for a few weeks. This year we flew to the USA and stayed in a house under the SeaTac flight path. Rather than relaxing (which you can do on a 3 week holiday) we spent every day off doing stuff. The weather in Seattle has been hot – we chose to go there as it wouldn’t be too hot. Walking at altitude in Mount Rainier park was hard work – the most exhausted I have been for years. Also visited Snoqalmie falls and North Bend where they filmed Twin Peaks.

As for the jet lag …. never realised it was so debilitating. I thought it was just being tired, not feeling sick as well. Anyway home in time for the youngest’s A level results – she is off to her first choice university next month.

 

 

 

 

Holiday Time (after 4 more medical appointments)

So on the Monday I had a doctors appointment. On the Tuesday I had an MRI – amazingly dozed off in the machine, must have been very tired! On the Wednesday I met my boss for coffee and phoned the ferry company to see if we could come home early. On the Thursday I had the results of the MRI. A lump in my right breast and a “dark area” in the left but still somewhat inconclusive so another appointment for the Friday.

Friday morning and yet again at the hospital. Had 5 biopsies – ouch! When I got home the kids had done the jobs I had left them, they helped to pack the car for our holiday and we left for France. My breast nurse phoned when we were travelling with an appointment for my results. We had changed our ferry and were coming home a few days earlier than originally planned.

Slept like a log on the ferry after the anaesthetics, pain killers and a Guinness!

Arrived in France on my daughters birthday and drove to our gite. We had a bit of a hair obsession going on this holiday as we knew the likelihood was that mine would be going. At the time it didn’t worry me – after all it is just hair. However I unexpectedly came across a photo of myself the other day  with long hair that I had not seen before and promptly burst into tears!

2015 08 01_Liz_1821  2015 09 01_Liz_1203

Yesterday she was 18! Cannot believe where that time has gone. We have planned a special holiday this year and are going to Seattle. It may be our last summer holiday together (due to the kids ages I hasten to add) so we thought we would do something special. As I type this nothing has yet been packed although I have a few things planned to do when we get there nothing is set in stone apart from the kids going to a gig.

Who to tell and when

So my husband told my kids the news. I unfortunately made the mistake of asking my daughter not to put it on facebook, etc. I should have been more specific as she took this to mean she could not tell her close friend/confident through a private message. It took a few days for me to realise that she was bottling up emotions when she should have been discussing them with her peers.

I phoned my mum. Quite a hard phone call but I knew I would be seeing her in a few weeks as she was due to come on holiday with us – we assumed at this stage that our holiday would still happen. We arranged for my brother-in-law to be with my mother-in-law when we told her – she was in her 90s. 

I was supposed to be “depping” for a band the day after the diagnosis. My husband managed to get someone to cover for me simply telling him that I was unavailable for “personal, non-trivial” reasons.  I think some of the band knew something was up though when at a gig 2 days later I was trying discreetly(!) to pick the brains of a nurse friend about MRIs. I was concerned as my ring finger was starting to swell and I couldn’t get my wedding ring off. Luckily a phone call to the MRI department confirmed that I could keep it on. With what happened next with my finger though I think we should have persevered and removed it then.

My husband told our conductor after our last rehearsal before our holiday. We were due to play in the national finals in Cheltenham in September and the likelihood was that if I had an operation on return from holiday I would not be playing.

I emailed my boss and arranged to meet her for coffee out of the office. It was school holidays so I was only due in the office 2 days a week but with what turned out to be 4 medical appointments that week I wasn’t going to make it in. I started writing handover notes for my colleagues.

So how do people react? You get those ” friends ” who don’t know what do say, so they ignore you. You get those that gaily inform you that cancer gets us all in the end and know loads of people who have not survived. You get some who repeatedly tell you that they will pray for you even when you ask them not to (to me this translated as “I am praying for you because I think you are going to die” – it did not bring comfort). Then you get the friends who supply you with tissues, let you cry on their shoulders, make you coffee and buy you cake.

I have some difficulty now when people ask me how I am. “Good thanks” doesn’t seem enough – they want details of my physical and mental wellbeing. Then the next time someone asks you reply “Good thanks, just a few side affects from the drugs but at least I now have hair” then you realise that you hadn’t actually spoken to this person for years or it was a work colleague who wasn’t around when I was in treatment and they didn’t know what you were talking about.

You have to be able to guess what people are asking and tell them what they want, after all who really wants to know our fears.