Halfway There...and Living On a Prayer (literally!)

Today marks the halfway point of the chemo. I have my mid way CT scan on Tuesday which will influence the way forward (I’m really worried about the scan but I guess this is how it’s going to be from now on. 

Not much has happened over the past few weeks which is why I haven’t written here for a while. I had all my hair cut off short and I don’t like it! (Other people say it’s nice though). It continues to thin, particularly on top.

Other than that the chemo symptoms have remained more or less the same with the addition of a sore mouth and eczema on my hands. I’ve been so knackered and wrapped up in my own illness that I haven’t given work a second thought (which is probably a good thing, but it does make me worried about going back).

I do feel as though my anxiety level have increased and that I have become very reliant on Andy being there as I get easily upset. But he has been keeping me busy helping him to source computer parts, which I’m getting good at. His boss has been really good letting him have time off to come with me to all my appointments. 

I’ve started following Bowel Cancer UK on Facebook and it is astounding how many younger people have similar stories to mine... GPs not listening or not acting upon clearly stated symptoms because we are “too young for bowel cancer”. On the 70th anniversary of the NHS I just feel very let down by the system.

Anyway, all there is to do now is wait for the scan results to find out where this journey will take me next.

Reflection

Everyone is on their own journey

This blog entry comes from The Grand Hotel in Torquay. Andy is back working for his previous employer and he’s down here working for the week, so I have come too for a change of scenery.

I’ve not written for a little while, as things have been rather quiet, but I have been doing a lot of reflection recently, plus there is news to tell...

First with the news. I can now (finally!) announce that my eighteen year old daughter is pregnant, due in November, so I’m going to be a grandmother at the grand old age of 40. I didn’t really need this additional drama in my life and, to be honest, nor does she, but, what is, is!

The second bit of news is that Andy has proposed! We had always said we wanted to marry eventually, but now the time seems right. After chemo, he took me for lunch at the pub where we first met, got down on one knee, nearly knocked the table over and then asked me to marry him! Obviously I said, “Yes!” So now I have a wedding to plan - Arrrgh! It’ll definitely be a very quiet, personal affair, so don’t go out buying hats or anything. We’re not going to set a date until after my CT scan in July, as the outcome will affect our plans. Whatever happens, I am happy.

Back to the reflection, the title of this post. I started chemo round three on Thursday and saw a few familiar faces of other people going through some form of chemo treatment (I can’t believe how many different treatmenst there are for all the different types of cancer). We all got talking and one of the ladies, who has had breast cancer, was feeling really low and said she had really been suffering with the chemo (she was moaning and complaining a lot!). She has lost most of her hair, which she has really coped with well and I admire her courage. I’m going to get mine cut short this week as it’s coming out in handfuls and becoming really thin - I’m petrified of doing it though! 

As I continued talking to this lady at the clinic, she revealed that they had managed to get all of her cancer out and that the chemo had been offered just as a preventative option. I actually felt jealous initially and I also felt slightly cross at how depressing she was being about how awful and hard going her chemo was. At least she has a more favourable prognosis; I have no choice and my cancer is highly likely to return! 

Since this moment, I have really spent quite a lot of time assimilating these feelings and, on reflection, have talked myself back round to the understanding (which actually I always had before I got ill) that everybody’s on their own journey, and everybody’s journey is different; you should not and cannot compare, because the way you perceive others’ journeys is just your perception- not theirs. The same with my daughter’s situation; we have to respect people’s life decisions because they are theirs to make. 

I also think, teachers have to grapple with this concept as we have a role and a duty to influence and shape our pupils to become the best they can be, but all we can do is guide them; they have to make their life choices for themselves.

Anyway, I’m rambling. Chemo round three is underway. The sickness is not so bad this time so far, but it’s early days. I’m gutted to have missed the annual drama of SATs week for the first time since qualifying as a teacher, but I know my staff will have ensured the children did their best. 

It’s very interesting being off work during term time. The shops are really quiet and it’s actually lovely to have no kids around. I’m now off to enjoy the spa! 😁

Back on the bike

Day 9 of chemo round 2 and generally much the same as the last time. Nausea has been worse than before and my hair has started to come out in handfuls (I have been assured it will not all fall out, it’ll just become thinner!). There’s no more news on the cancer front, so just need to continue on the chemo until the CT scan in July. As the fatigue seems to kick in during the afternoons, I’ve been using the mornings to clear out lots of the crap I’ve been hoarding for years, which has been quite liberating. ‘Chemo brain’ is kicking in though; I don’t seem to be able to concentrate on anything for very long, meaning there are lots of half-done things around the house at the moment (half renovated deck chairs, half finished sewing, half finished painting projects!). I guess they’ll get done eventually.

I’ve been very lucky to have lots of different friends visit me over the past weeks and that’s been fun. I never made enough time for catch ups with friends while I was working. You definitely need to ensure you make time rather than just always being too busy!

I also had the misfortune of bumping into my ex mother-in-law at the hospital, which was very awkward. I counted myself lucky though, because apparently I only missed my ex husband by a few minutes! I definitely don’t need that on top of everything else!

I’ve spoken to the big boss at county and have now accepted I won’t be able to return to work until at least October. It’s taken quite a lot to get my head around this, but my headteacher mentor visited the other day and made me realise that it really doesn’t matter because there is someone taking my place and keeping my school ticking over; it’ll be looked after and will still be there with all its highs and lows when I am able to return (Thanks Gill!).

Today I got back on my motorbike for the first time since my op. I haven’t been on the bike since last summer, as I’ve just been too ill to ride, so this was a big thing for me. I was really nervous that I wouldn’t be strong enough, but Andy made me do it (I probably wouldn’t have otherwise!). I’m so glad he did; I’d forgotten how good it feels to open the throttle on a clear road.

A Bad Day

“It is during our darkest moments that we must focus to see the light.” - Aristotle 

Just in case people start to think I walk around emanating positivity, I felt I should write about my day today.

The last 6 days I have been off the chemo drugs and I had begun to get my energy back. We’ve got lots of bits and bobs done around the house, which has been good. But today was day one of chemotherapy round 2. I prepped myself by looking back at the diary I have been keeping where I record any side effects and medication taken, so I knew I would have a painful arm and tingling sensation in my hands and feet as well as the hypersensitivity to cold.

The intravenous Oxaliplatin was really uncomfortable going into my vein, more so, I think, than last time. I got home and felt a bit yucky so rested for a while. Then I called the hospital to gets the results of my blood tests done two days ago. Now I’m still learning about what the blood test results mean, so I looked up the parameters for pre chemo bloods and found myself on the cancer research uk website. This showed me that I am still within the acceptable parameters for ‘normal’ bloods. My platelets have dropped but not too low, but otherwise numbers for white blood cells etc were more or less in line with the pre chemo bloods taken last time.

However, I then began clicking on links to other pages of the website specific to my type of cancer... big mistake! I started reading survival statistics (which my oncologist will not entertain, as he says we cannot predict life expectancy right now). I got myself really down and upset, even though I know they are statistics, averages, and even though I was already aware that the prognosis wasn’t great. I’ve spent the rest of the day randomly crying and needing to sort my head out. 

I’ll be ok tomorrow; it’s just one of those really down days! 😢

And I just want to add that I wouldn’t be able to deal with these days if it wasn’t for Andy, who seems to know when a hug/ an “it’s ok to cry.”/ a return to rational perspective/ a ‘just need to leave her alone’  is required (I don’t know how he does that when he is clearly having to assimilate the shit show that is currently our lives!).

Chemo Round One

So I started chemo a few weeks earlier than expected because the doctors deemed me well enough. The chemo I have been prescribed is Xelox, which is a combination of Oxaliplatin and Capecitabine delivered over eight consecutive 21 day cycles. Day one of chemo was on 19th April and involved the Oxaliplatin being pumped in intravenously over two hours. We were at the hospital all afternoon though because everything took ages (waiting for the pharmacy to dispense the drugs). It was quite an emotional moment when they connected the drip and started the pump. 

Days 2 to 15 are Capecitabine tablets to be taken twice a day. They also sent me home with anti sickness tablets and Loperamide (for diarrhoea) as well as a few days of steroids. Today is day thirteen and I feel I have been fairly lucky with the side effects so far, considering the massive list I was given of possible side effects. The two main side effects for me have been severe fatigue and hypersensitivity to cold things (I can’t hold things that have been in the fridge!). There has been some diarrhoea, nausea, thrush and numbness/tingling in my hands and feet, but otherwise I’ve been ok.

Due to the drugs, my immune system is not functioning properly, so I have to avoid possible sources of infection. We’ve had to become an ultra clean house, so antibacterial soaps and sprays and paper towels rather than hand towels. I’m not allowed near ill people and have been advised to avoid crowded places. There’s also a big list of stuff I can’t eat, which sadly includes blue cheese, undercooked steak, shellfish and Mr Whippy ice cream!

Days 15 to 21 are drug free, so I’ll have to wait and see if the side effects subside before beginning the whole cycle again.

Also, my oncologist received a response from Basingstoke Hospital a couple of weeks ago. They’ve asked for further tests to be done, but they did also say they had looked at my pre and post op scans and noted a ‘solitary omental nodule’ (a spot on my peritoneum) on my post op scan that wasn’t there in the pre op scan. The oncologist says we will just be keeping an eye on it for now. They are planning to do the next CT scan three months into chemo.

A Blow to the Head

“Sometimes life's going to hit you in the head with a brick. Don't lose faith.”  -Steve Jobs

The day of the oncology appointment had finally arrived so we could find out the way forward. I was still an inpatient at the hospital following the 999 saga, so Andy wheeled me down to outpatients to see my surgeon first and then the oncologist. This was much to the disgust of the hospital staff, who like to keep inpatients and outpatients separate; I was asked several times if I was in the right place sat in the waiting room in my pyjamas!

What came next was an absolute blow to the head. We were told that the cancer was the worst and most aggressive form of cancer there is (T4b, N2b, M1c, EMVI positive grade 3 adenocarcinoma of the splenic fracture - for those of you who know about these things) and that it is incurable and the chance of recurrence is extremely high. They plan to carry out a six month chemotherapy treatment comprising of Oxaliplatin and Capecitabine in an attempt to keep control over the disease and have also made a referral to Basingstoke hospital, which is a centre of excellence for this type of cancer, to seek their advice.

My first reaction was, “But what about work! I can’t have that much time off!” Apparently this is not an appropriate thing to be worrying about when you have just been diagnosed with stage 4 bowel cancer; that’s what my friends, family and colleagues say anyway! 😜

The staff in the Macmillan unit were fantastic, especially when we came out of the consultation room and, thinking the corridor was empty, I said rather loudly, “We’ll that’s just fucking shit isn’t it?” and then burst into tears. A nurse appeared from nowhere and ushered us into a quiet room.

This was the day I stopped believing in karma. The concept of karma has got me through some of the darkest times in my life and it has served me well as a crutch to get my head out of negative spirals when things seemed so unfair. But the really bad things that have happened to me before could almost always be blamed on someone else, allowing the karma concept to work for me; it doesn’t work for cancer...I’ve never done anything that bad!

Chemo was due to start in two months to give me a chance to recover enough from the op.

999

A spanner in the works

So, home from hospital and my only job was to heal from the op... boorrring! Andy had to go back to work because he had had so much time off, so I was mostly home alone. I spent a lot of time reading novels and sleeping.

The district nurse had been round and removed the staples from my wound and the stoma nurse was coming weekly to check on me too. 

In general, although each day things were getting better, I was still in pain and quite uncomfortable. On day 19 post op, I was in agony in my tummy. At first I thought it was just the normal trapped wind or post op pain, but it continued through the night until eventually I conceded and Andy called an ambulance because I was in so much pain, I didn’t feel I could travel in the car. The 999 operator took down all of the details and told Andy that someone would call back within two hours. As it was about 2am, Andy told me to try to get some sleep. I had taken the maximum doses of morphine and paracetamol and must’ve dozed off because the next thing I knew there was an ambulance in the driveway and two paramedics knocking on the door. It’s quite surreal having paramedics in your bedroom at 4am, hooking you up to all sorts of machinery! Anyway, they said we had done the right thing by calling and decided to take me in. 

When I arrived at A and E, they pumped me full of morphine again and arranged for a CT scan. My bloods showed that my inflammatory markers were high, but the scan showed no sign of infection. The pain became more intermittent and they kept me in overnight for observation, but no real reason was given for the flair up.