Four year cancerversary (late, sorry...) and life epiphany/latest fad herein

I missed the blog post for the 4 year cancerversary on 12th April 2017 but don't worry, I did not forget and I celebrated by buying myself shedloads of Superdry togs. I'm such a chav.

So what has been happening since the last blog post? Let's get the medical bit out of the way first. At my routine yearly check the Oncologist said that they were going to change my hormone medication to the ones suitable for post menopausal women now. It is normal to do this after a few years, if you're still alive.

As part of this change I have to have a bone density scan to monitor for signs of bone thinning. Agreed to that only after receiving reassurance that even if there was cancer in my bones it would be extremely rare for it to be detected by this type of scan. You may ask why I wouldn't want to know about cancer in my bones as early as possible? If you are asking yourself that then lucky you, you are probably an optimistic person who is completely unaware of what this sort of discovery might mean.

So that scan is in May and I already have the new tablets to start taking when I finish existing ones. 

The other things that happened since last year's post are either a new way of life or a fad, I will let you know...

So I developed an rather unhealthy relationship with drinking alcohol and going to the pub. I had some fantastic experiences and created some very precious memories during this time, they were good times and I thank all those involved (!) but sadly it could not go on. It was not the way I wanted my life to be.

On Boxing Day after a particularly spoilt brat incident, I gave up drinking alcohol. I discovered a brilliant and supportive Facebook group called One Year No Beer and initially set myself the target of one year alcohol free. As part of the challenge we were encouraged to take on some other form of personal challenge to focus on as well. I chose running. 

In February I began training with The Scrambled Legs, a really inspirational group of ladies who train together to run the Chudleigh 6 mile road race in July and fundraise for Cancer Lifeline South West which is a local charity providing respite breaks for those who have received cancer treatment.

At the end of February I buggered up my Achilles' tendon and had to rest from running for about 6 weeks. Went back to it at the end of March and managed about 4 runs before developing a blister on my foot which became infected. Seriously. FML.

Currently on antibiotics for the infected blister and have had to stop running AGAIN. However, I have not given up and I fully intend to return to training when I can. The other "Legs" have been unfailingly encouraging and supportive even though I am very conscious that I only met them in February and have come across as a total sick note ever since!

The Scrambled Legs have a target of £10,000 to raise this year. Our donation page is at https://mydonate.bt.com/fundraisers/scrambledlegs2017

If you like this blog post or have any sympathy for this cancer patient's repeated false starts at trying to do ACTUAL EXERCISE for the first time since school, please do think about donating as it means so much and keeps us going with our training efforts too.

So in the past year I have learnt that I might be able to run if I can just stop getting injured and that even when sober I still bring the party, it just ends earlier than before and with less feeling of existential dread the next day...

Three Years On

Ok so I thought I'd do a post for my three year "cancerversary". Now I can't work out whether I like that term or not, but this year I have used said term to justify my purchase of a Bose Mini Soundlink speaker, so it's all good.

Firstly, apologies for my absence on the "Two Years On" blog entry, in that there isn't one. I'd like to say that I must have been out nightclubbing and forgot, but as a menopausal mum of two small children, I doubt that was the case. I was probably asleep.

So today was reassuringly normal even by average standards and certainly way more normal than this day three years ago when my world had altered beyond recognition.

I set off for work this morning and made it, oh at least 650 metres from home, when the strange unexplained noise we had been ignoring for a while on the car suddenly became a much louder and more constant strange unexplained noise. I have come in for much criticism from the husband over the years for my poor judgment as to which car noises mean carry on driving and which ones mean stop immediately. I froze up the wheel bearing on my first car and my husband had to rescue me and drive the car in reverse from near Teign School back to the garage in Teigngrace as that was the only direction it would travel in with a frozen wheel bearing. Oops.

So now I err on the side of caution when I hear a noise and today I turned back straight away. Husband had a look at the car and did not think anything was going to fall off but I rang our trusty mechanic anyway. He wanted to have a look. So the husband and I got in to a standoff as to who would be responsible for taking the car to the garage. He did it. But I have to go and retrieve it tomorrow and worst of all, no obvious fault has been found as yet so there is still plenty of scope for me to make a monumental bad decision next time it starts up with making the noise.

I took the day off from work as holiday. Again, reassuringly normal compared to three years ago when I simply went AWOL in order to attend my hospital results appointment.

I'm not sure what else there is to report and I'm quite glad that is the case. Several (ok, like, two) people have said to me that I should carry on blogging but it kind of focused around medical appointments before and they have thankfully been largely uneventful in recent months. I will spare everyone the story of how a mention of back pain at a routine Oncology appointment led to an impromptu "internal examination". Suffice it to say that I discovered that the Consultant Oncologist is not just a pretty face who sits at a desk and writes prescriptions for serious strength drugs.

On that note, all that remains is for me to say onwards and, erm, onwards I suppose! Upwards might be tempting fate.

One year on

So it is one year since the date of my diagnosis.

I have on the face of it completed the major parts of the treatment that has been recommended for me. I will now attend appointments three monthly.

Many people I see are asking me if I am "well" or "ok" now. I am happy to update people. But I think when it comes down to it, some are hoping I will say the magical words "all clear". They will be disappointed as the term "all clear" only exists in the Daily Mail.

No, I haven't had a scan. Scans can show one thing today and a completely different thing the next week. That applies to any one of us, not just cancer patients. If my Oncologist started mentioning full body scans it would be 50/50 whether I actually consented to it at all. As for going back and getting the results of said scan, hmmm, you've got perhaps a 20% chance of me bothering to do that. You have to let it go. Scans don't mean anything. They are simply a snapshot of one particular day. If the cancer spreads and becomes secondary breast cancer then it really doesn't matter too much how quickly it is detected. I know the papers don't tell you that. 

I may well have a scan one day. Who knows. 

At the moment I feel well. I have hair. I have learnt a few things. And that's enough for me.

Gender Reassignment Complete

The first thing to report is that I did not go to hospital at all during February. AT ALL. That was a weird feeling.

The day of my operation arrived, March 4th. I didn't have to be at hospital until 12.00 although obviously I was nil by mouth from 8.00am. I had made a doctor's appointment for Abbie at 9.00 to check that her recurrent ear infection was actually going and that she was not going for the hat trick of antibiotics courses as she has achieved in the past. Thankfully on this occasion it turned out that the recent double whammy of amoxicillin did the trick. 

So the GP asks me how I'm getting on and I say ok. He tells me I've done "remarkably well". Praise indeed. I tell him that incidentally, I'm having a risk reducing hysterectomy too. That afternoon. I like to keep them on their toes.

Took the kids and their stuff to mum's, collected my Dad who now customarily accompanies my husband on various window shopping excursions (B&Q, Bensons for Beds - they know how to live) whilst I am under anaesthetic, and headed to Surgical Admissions. I did have a letter telling me I should phone the hospital at 10.45 to check there was a bed for me but I figured by the time I spoke to the right person and got the answer to that question I might as well just have travelled there anyway so I didn't bother with that.

Upon arrival things move forward in the usual way. I see my Consultant's Registrar and the the anaesthetist. They give me 1,000mg of paracetamol and 1,600mg (like, four tablets' worth!) of pre op ibuprofen. That doesn't normally happen. It's usually just a couple paracetamol to get the drug party started.

I am the only one on the afternoon list and I should be taken down by 2.00. I am pleased not to have to wait ages for once. I am asked to get changed and I do so and then have a dilemma about my pants. They are going to be putting in a catheter, which I haven't had before. I therefore surmise out loud to Dad and Dan that I should probably take my pants off. At which point Dad reminds me that given the nature of a Laparascopic hysterectomy and the route by which the redundant organs will be leaving the body, the catheter is just one of several reasons not to wear pants! For the record, I liked him better when he was cowed in to silence by the seriousness of the situation at my previous ops, he was now veering dangerously in to mickey taking territory.

I walked down to Theatre feeling pretty nonchalant really. I briefly saw my Consultant before they put me under. I didn't get to meet the robot, though.

I awoke again in Recovery just before 5pm. I felt as if I was in advanced 10cm dilated labour but with no real gauge of how and when it might ever end. Now I got through my second labour with no pain relief but psychologically this was very different and there was no room for heroes here folks! So I gleefully allowed the nurse to siphon Fentanyl through my cannula whilst at the same time syringing oramorph in to my mouth. As usual I couldn't stop shaking so they plugged me in to the bear hug blanket or whatever it's called.

Then I went up on to the ward. I nearly caused a division in the team during the first hour. The ward sister didn't want me to get out of bed to go to the toilet, she sent her nurse with a bedpan which I said I didn't want and that whilst I was physically able to get up then I would do so! Another nurse heard this happening and said she remembered me from last time and she was sure I would be able to walk (I'm flattered, I think) and she would help me. I did walk.

Paracetamol and ibuprofen didn't touch the pain but one Tramadol brought it down to 5cm dilated labour equivalent. Two more Tramadol at bedtime kicked the pain in to touch and also helped me sleep for the first time ever after an op, bonus.

There were three of us in the bay at bedtime and the due to A&E gynae admissions the bay filled up overnight until all six beds were occupied. Not seen that before, found it quite interesting to observe between periods of sleeping.

The next day the Registrar came in again. She said I could go home that day. To cut a very long and frustrating story short, I collected my things and we went home without any of my prescribed meds after 2.5 hours of unproductive waiting in the day room following a cock up in sending the pharmacy order down. I knew I had stacks of co-codamol at home still, which turned out to be a good thing as I did need them a couple days after.

Now I am recovering slowly, got some bruising and feel lightheaded quite often but no real pain as such. I'm taking it easy for the time being and hoping I won't get an infection like last time.

Impulse Purchases

Anyone ever signed up for something and looked at what they had signed afterwards and thought "crumbs how did that happen?!".

I went to the hospital today and saw a very nice lady, a Consultant Gynaecologist. I came away having signed a consent form for a (deep breath) Robotic Laparascopic total hysterectomy and bilateral salpingo-oopherectomy.

Don't get me wrong, it's what I've wanted all along, but as I made my way to my fourth pre surgery assessment clinic in less than 12 months I did fleetingly wonder how it all came to this. They've not quite reserved me my own chair in the pre assessment waiting room yet but my acquired nonchalance meant that even when I ended up with the slightly eccentric but sweet nurse doing my bloods I didn't even mind. Good thing too as it turns out, given that once the needle was in she promptly dropped one of the tubes on the floor and had to bend down and pick it up whilst holding the needle still in my vein. She said that had never happened to her before. I'd rather she bent down than took the needle out and stuck me again though!

Anyway back to the robot. Apparently I am an ideal candidate for keyhole surgery using the robot device. Great, off we go with that then. I shall be asleep so it is not really my concern whether R2-D2 performs my op, as long as he does a reasonable job.

The date of the surgery is 4th March. I already know I am on the afternoon list so at least I will be able to have breakfast and there won't be any waiting at hospital from 7.30am until 4.30pm hell, like last time.

In which hospital becomes a daily routine

Well it's been a while since I updated but if you assumed that meant that I'd been lying around doing nothing then to be honest, you wouldn't be that far off the mark.

I started 15 daily sessions of radiotherapy on 2nd January - Happy New Year to me...

My first few appointments were at 11.45 and I have to say, that appointment time was hugely irritating. What the hell has happened to hospital parking?? Now I have been coming to the place since April last year and I thought I had got to know the good and bad times for parking. However there has now been a complete shift back to the bad old days of not being able to get a space unless you arrive by 9am. What's that all about? It's not a gym for Christ's sake, it's not like everyone makes a bloody resolution to go to hospital more frequently in January!! I certainly didn't, anyway, although clearly that's how it has turned out given that I've been there every weekday since 2nd January now.

After a few 11.45 appointments I shifted to my requested earlier time of 9.30 which is much better for parking.

The radiotherapy itself involves a 15 minute session being 13 minutes of getting undressed, lying on a table and being manipulated to the nearest millimetre whilst imitating a dead weight and 2 minutes of being left alone in the room listening to the likes of Lenny Kravitz and Paul Young (hadn't heard "Every time you go away" for ages, quite enjoyed it) while a huge arm/beam device moves around targeting specific points on the chest wall with a radiation beam. They always put a jelly like pad on me first which kids the machine in to thinking there is tissue there - as opposed to skin and bone - as apparently otherwise the machine will give its best dose too far in to the chest whereas they want it to hit the chest wall itself. Tedious technical lecture over, moving on now.

The staff are all very nice but noted some of them have very cold hands.

There has been one day when treatment was aborted as the machine broke down. Apparently this is not a major problem and they have just added an extra day on at the end.

As for side effects, I'm getting a pinkish area at the site being treated. Looks like sunburn but you can't feel it like sunburn. The head radiotherapy 
lady keeps shaking her head and saying there is a definite risk of the skin "breaking down". Having had chemo I'm now familiar with the throwing-all-possible-side-effects-out-there-in-the-hope-that-if-they-don't-in-fact-occur-the-patients-will-think-everything-is-just-dandy technique and I hope that is what is going to apply here. I shall keep on applying the aqueous cream and we will see.

In other news I have received my free prescription card. The mind boggles at the number of things I could now potentially obtain entirely gratis!

Also, Christmas happened. It was nice family time but frustrating being forbidden from even peeling a potato. I'm pleased to report that after a second course of antibiotics prescribed by my surgeon on Christmas Eve the infection seems to have passed and the range of movement in the arm has started to improve too. By itself. Now I don't want to discredit the exercises they recommended doing, but they didn't feel right so I stopped them. In some cases perhaps there is a school of thought which suggests that the concept of "Physio" is possibly no different to the concept of "Time".

Happy New Year one and all.

The Twelve Days of Christmas

On the twelfth of December my true love sent to me, a fever of 38 degrees.

Plus serious aches and a general feeling of malaise. Contacted the Breast Care unit who saw me same day and I had 40ml of fluid drained from my recent surgery wound. Advised to "do nothing" to avoid further fluid accumulating. Off work AGAIN.

On the thirteenth of December my true love sent to me, an emergency visit to the GP.

My wonderful GP agreed to see me at 5.30pm on a Friday as I was in a right flap about feeling so lousy and not knowing why. I was concerned I might be reacting to the Tamoxifen tablets that I had recently started. He rang microbiology who said that the fluid drained off was not showing any infection as yet. As the fever seemed to have broken and the wound wasn't that red, he thought we could probably watch and wait over the weekend.

On the sixteenth of December my true love sent to me, revised results from Microbiology.

The fluid was infected. Having tested it they knew which antibiotics should work and which wouldn't. My GP stepped in again, liaised with the hospital and prescribed Flucloxacillin. Take 4 times a day on an empty stomach. How do I fit that in around actually eating as well?!

On the seventeenth of December my true love sent to me, a planning meeting for Radiotherapy.

Went to hospital, had a CT scan, had a snakes and ladders/grid affair drawn on me with black pen and then three prison method tattoos (seriously, just ink and a needle readers - no fancy buzzy tattoo pen) dotted in the middle and sides of my torso. Yes they are permanent.

On the nineteenth of December my true love sent to me, a check up of the infected vicinity.

Saw the Breast Care nurse again. Infected area still red and hot but no further fluid accumulating. She measured the red area so that we can tell whether it is getting better or worse. She also reassured me that the infection is sensitive to other antibiotics as well so if this one doesn't clear it then they have others to try. 

The good news is that today the redness seems to be reducing. I am going to limit activity until at least new year now as the nurse advises to try and give the area time to heal so that hopefully there are no pockets for fluid to gather in once I start being active again.

Onwards and upwards!