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!

Oncology Reunion

You will probably recall that several months ago my Consultant Oncologist put our relationship on hold due to me being too boring for him.

Well I am pleased to say that we were reunited on 6th December, although I fear I might still be quite boring.

He talked about the hormonal therapy Tamoxifen which I am likely to need to take on a daily basis for at least 5 years. Discussed the side effects - aching, menopause, hot flushes. I'm already there anyway after what is colloquially referred to as the "chemopause".

Then we had a chat about radiotherapy. I will be having radiotherapy to the chest wall only and not the armpit given that as far as we know there were no cancerous cells present in the armpit.

We talked for some considerable time about a Trial that I would be eligible for. The Consultant was keen for me to hear about it. I get a sense that the take up on this study hasn't been great. As far as I can gather the current position at my hospital is that they give 15 radiotherapy sessions. It used to be 25 sessions but a study was carried out which suggested that 3 weeks was adequate.

The Trial involves giving higher dosage over one week rather than three. I asked several questions including what the thinking behind this was and whether there was any suggestion that this could be beneficial in terms of the women receiving it. My chap said not really, it is simply being trialled due to demand for machines. 

After answering that question and getting my "so that's your client's case then, is it...?" look in response, I think he strongly suspected then that I was unlikely to be a "yes". 

He then immediately decided to cut his losses and said "I'm just going to get the consent form [for radiotherapy itself] and prescription [for tamoxifen]". Next thing I know the nurse comes back in with those items. Erm, ok then, so that's the end of our consultation. No, I didn't have any questions - thanks.

I didn't even get the chance to ask "When will I see you again?". Am I too clingy? Is it my fault??!

Top Pain Chart Countdown

I had my post op consultation last week. Mentioned the difficulty in moving my arm certain ways and my Consultant thinks it is "cording" which is something to do with the damaged lymphatic system in my arm since the lymph nodes were removed. It feels as it sounds, like there is a cord or wire very painfully restricting one's range of movement.

I have stretched it out which bloody hurt but did help a bit. As it happens, I was trying to think the other day what was the most painful thing I had ever experienced. Two labours with no pain relief? Immediate aftermath of surgery? That ear infection I had when I was 21?

Nope, none of those. It was first-time breastfeeding. My dear, stubborn first born thought she knew how to do it and would not be shown - the midwives trying to help me with this identified her as "feisty" on her very first night on this planet. She rapidly ruined my poor novice nipples and for the first couple of weeks I experienced the worst pain I'd ever had. Every. Single. Feed. But I was determined to carry on as obviously I could not allow my days old daughter to be more stubborn than me...

Anyway getting back to the point (I'm sure you were hoping we might arrive at one at some stage), the pain of stretching out cording is on a par with the early breastfeeding experience although marginally better overall, given that I have a choice when I stretch out the cording as opposed to having to do it every two hours including during the night. It doesn't involve dirty nappies each time either.

My Consultant also had some good news for me which was the 9 further lymph nodes he had removed were all clear of cancer cells. This means that as far as we know, the only lymph node affected was the one which was removed during my first surgery back in May. This was the best result that I could have expected from the latest op so I was happy enough with it. The worst outcome would have been for him to tell me that they had found live cancer cells in the nodes as that would have meant that all the chemo had not worked at all. 

I am seeing the Oncologist on 6th December to talk about starting radiotherapy. I just hope that the range of movement in my arm is good enough for the radiation beam to access the scar site otherwise if I have to stretch out the arm every time for 20 plus sessions, radiotherapy might quickly be making a new entry at the top of my pain chart!

Stunted Recovery

I came home from hospital last Wednesday. Had the drain device removed on Monday - much less painful than I expected, the worst part was peeling off the dressings. 

Unfortunately it would appear that the operation I have had is of the rather unique variety of procedures which gets worse as opposed to better on every subsequent day of so called "recovery".

Every day a new nerve in my arm reawakens from the operation and presumably realises "oh, actually, I appear to have been severed or severely damaged. Let's make my condition known to my human straight away!".

The result of this is that straightening the arm out or putting on anything other than a zip or button up top is very difficult. I have also taken to moving around with that arm slightly bent at all times. Touching the outside of the arm is a no-no as the sensation feels like very bad sunburn.

I am seeing my Consultant tomorrow so I will be able to get some advice as to whether I am doing the right thing by trying to stretch the arm out despite the pain and stiffness. It's nothing anyone has done wrong by the way, these are all common and recognised effects of this procedure. The benefits are supposed to outweigh the drawbacks and that is the basis upon which anyone having an operation gives informed consent. Unfortunately there is always some collateral damage which could sadly affect me for the rest of my life.

However I hope that what is happening here is that things are getting worse before they start to get better, fingers crossed.

At least it wasn't my dominant arm!

Second ever general anaesthetic survived!

So today I had my Axillary (armpit) lymph node clearance. I was told to arrive at hospital at 7.30am. Despite my real suspicion that it probably would not matter if I didn't arrive until lunchtime, I duly set my alarm for 5.30am.

Got to hospital at 7.30, went in the wrong lift, through two incorrect zones and after giving in and reading the actual directions signs, made it to Surgical Admissions at 7.40.

Saw my Consultant by 9.00. He draws on me then drip feeds me the first unwelcome bit of information which is that I am not going to be operated on until after lunch. His lunch, that is, given that I am nil by mouth and have not eaten since 8pm Sunday. 

Then I see the nurse to fill in the usual paperwork. After that another nurse takes pity on me and moves me out of the generic departure lounge and in to my own room with a bed. Pleased with that as the chairs were already making my bum ache.

The Anaesthetist comes to see me and drip feeds the next negative nugget of information - I am in fact last on the list. Not just after lunch anymore, last. As per my previous post I expected this so I was not too devastated. Just hungry. It's amazing how much the hours in the day stretch out when they are not punctuated by nice cups of tea and various meals and snacks.

The Anaesthetist also tells me that they do tend to put the "healthier" patients last, so presumably I was considered the patient most likely to survive 24 hours with no food and 8 hours with no water. And here I am, so they were right.

Went down for the op at 4.00 and was in recovery by 6.30. Tried a new (new to me) pain drug, Fentanyl. Quite effective. Off that now though and just on paracetamol and ibuprofen but I am allowed Tramadol too if I get bored, oops sorry of course what I meant to say was if it gets painful!!

I am now on the ward and still awake thanks to the anaesthetist reintroducing me to my old friend Dexamethasone, aka red bull on steroids. The nurse offered me a nice cup of tea just now and promptly received drinks orders from the two beds next to me as well. So we're all having a jolly post-midnight beverage. I'm pleased to report that I don't feel as much like I've been run over by a bus as I did after my last op and I don't mind being on the main ward this time either. I was a bit afraid of it at first but I am actually quite liking being part of the comings and goings. 

Anyway, I'm off to do some more ceiling gazing now and drink the rest of my tea. TTFN. 

More ops, more scars

Met with the Consultant Breast Surgeon last Friday to talk about the next step. He seemed to think I might have forgotten what was going to happen next - perhaps some patients do??! - so he gently reminds me that we had talked about doing the Axillary Lymph Node Dissection (sounds like a laboratory procedure but actually means removing all lymph nodes under armpit).

I confirmed my recollection of this plan of action and said that me and the Consultant Oncologist had been proceeding on the basis that this is the next step.

Prior to this meeting I had managed to get my blood test for anaemia done at the GP surgery. The GP was ringing me that afternoon to discuss my results and in the meantime I had rung the receptionist that morning who had told me that my haemoglobin was 8.9. That's not good and it was the same level it went down to when I had to have the transfusion before. I told my Surgeon about this and he made some enquiries and eventually got a printout of the full blood count which established that my haemoglobin was actually 10, so still anaemic but not as bad as 8.9 and it was my white blood cells which were at 8.9, which is a bloody good level of white blood cells to have achieved less than 2 weeks post chemo! Well done, body. Shame you didn't show the same level of efficiency when dealing with cancerous tumours.

Anaemia panic over we decided the hb levels would probably come up to normal again by themselves so we were pretty safe arranging a date for surgery. That operation has therefore been booked for 11th November. I've been warned that it's an "all day list". Anyone who has been in this situation will know that is subtle doctor speak for "you will spend the entire day starving. Starving, I tell you!!!"

The other thing that happened is that on examination the Surgeon noticed my currently-redundant-but-still-much-loved port. He's taking it out. No, I don't want to talk about it.

Blood test required. Volunteers?

Well what have I been doing lately? One week post chemo and the side effects have been mostly the same as the previous two cycles.

I went to work today but felt very tired by the afternoon. I also notice myself getting lightheaded and breathless which is what happened before when I became anaemic and needed the blood transfusion. Rang the ward for advice given that I don't have any further blood tests lined up at the moment and if I get to pre assessment for my next surgery with haemoglobin as low as it went before my last transfusion then I rather suspect that I will fail the pre assessment. 

The nurse told me to go to my GP surgery on Monday and get a blood test and a cross match done in case I do need further blood. I'm sure the GP receptionist will give me a suitably warm and welcoming response when I ring up trying to get them to simply do all that stuff there and then on my say so, I can't see myself getting within a 50 metre radius of a practice nurse for a same day appointment, especially what with flu injection shenanigans going on at the moment too. I may be pleasantly surprised. We shall see.

Saw the Genetics lady for my follow up appointment on Thursday. She is lovely, very enthusiastic about the research she is involved in. She confirmed that the BRCA 2 gene does not skip a generation, so what that means here is that if I have it then at least one of my parents must have it too. The testing process for my relatives is much quicker now they have my results as they know exactly what they are looking for in the DNA. Seriously, it has like numbers and grid reference codes and everything. She showed me mine on the results letter. Pretty clever stuff. 

She invited me to attend the support group in Exeter for people who have the BRCA genes. Now I'm all for helping each other and yes upon reflection I can see how I could be helpful and reassuring to someone considering a double mastectomy because yes I have had that same operation. However, other than that, what would we talk about?? I can see boundless foot in mouth opportunities occurring at a group populated by both ends of the spectrum. I'm envisaging one circle of attendees evangelising about the benefits of preventative mastectomies and timely GP referrals for BRCA testing whilst another group of actual cancer sufferers huddle around congratulating themselves on "taking one for the team" by being the one to get cancer thereby selflessly alerting their relatives to the existence of the BRCA gene in their family. Awkward...

Sixth Chemo

Yesterday I had my sixth chemo, the final session of this treatment cycle.

My bloods were fine, my haemoglobin was back up to 9.8 which is still not particularly high given that normal is around 12, but the blood transfusion did its job and kept me out of the danger zone this time.

Treatment itself went without any unexpected hitches and then Helen and I headed off to Totnes and had a lush afternoon tea!

I always stay at my friend's house the night after chemo. We had fish n chips and watched New Moon, the second of the Twilight saga. Pleased to report that said friend is well in to it now and even talked of getting up at 6am today to watch the next one. Well folks, it's now 5.51am and no sign of her yet, lol. The kids stayed over at my mum's so Dan got a nice break too. 

Later today I will be popping over to Torbay for my usual white blood cell boosting injection which I must say seems to have worked very well in preventing serious infection so fingers crossed it does so after this treatment as well.

On 18th October I am seeing my surgeon to get a date for my next op. I imagine that will take place in November as my Oncologist is keen to get the scar healed again so that I can have my radiotherapy. So disaster permitting and apart from today's flying visit for the injection, I have another two weeks before I need to be at hospital again!

D.N.A?? Well, take it awayyyyy....!

Firstly, only ancient Ab Fab fans like me will "get" the title of this post.

I received a call from the Genetics testing lady on Thursday in relation to the test we did in July following my diagnosis.

Now if she was calling me this could only mean that she had "news" because she had already said that if nothing showed up on the test then I would be sent a letter confirming a negative result and I would not need to see her again.

Despite knowing this, the bizarreness of the cancer experience meant that having had my pre chemo blood test the day before, initially I was only glad to hear that the person calling from the hospital was not someone calling to say that due to a blood problem Friday's chemo could not proceed.

So having established that in my mind I thought I had better concentrate on what this lady had to tell me. My blood tests had been submitted and tested for the BRCA 1 and 2 gene mutations - yes, just like Angelina Jolie, get me.

I have tested positive for what the newspapers like to encouragingly describe as the DEADLY BRCA 2 GENE. In fact, everyone has the gene but not everyone has the genetic mutation that stops your body from properly protecting you against tumour cells. According to statistics, the BRCA mutations are responsible for around 5% of breast cancers.

There are pros and cons to this result.

Pros:

1. All bets are off in relation to whether the health finger pointers can say that I caused my cancer by any sort of lifestyle issues such as drinking, taking the pill, etc etc. It was written since I was first born. For what it is worth I don't believe in the alleged lifestyle causes anyway to any great extent. I take the view that they are largely circumstantial "findings" put out there by research bodies in order to justify large amounts of time and money spent on research and trials which (through no fault of the researchers) come back inconclusive. It doesn't sound good to say "thanks for the million pounds in funding, we conclude that cancer is actually pretty random". I thought the same about the cot death research and warnings when I had my babies and it really doesn't help to make anybody think that what is literally a purely random and devastatingly unlucky occurrence is something that they could have avoided.

2. I know I have an inherited gene now and so my relevant relatives can be tested too, including my girls when they reach 18, if they decide to have the test. It's only a blood test but there is also a significant amount of genetic counselling that goes with it to prepare you for the possible result and to make sure you want to take the test given the decisions that might follow for you if you do receive a positive result. I would imagine this situation to be very difficult for someone who has not actually been diagnosed with cancer as yet but still faced with having to decide between yearly scans or actual preventative mastectomy surgery.

3. I had already made my surgery decisions on the basis that I would test positive for the mutation so at least I am not facing a preventative right hand side mastectomy now and I have taken the first steps towards arranging for preventative gynaecological procedures to be carried out too. I will re-visit that with my surgeon and oncologist now that I have my genetics test result.

Cons:

1. Erm, I am BRCA 2 positive which means that I have a much higher risk of breast and ovarian cancer, plus I would venture to add, other cancers generally. 

2. In the early 2000's when I first heard about these tests I saw my doctor and and asked him to refer me. He scoffed and said that the tests were still very new and he did not think my family history would qualify me for referral. Since receiving this result I have checked the NICE guidelines for GP referrals which were in place at the time and it appears that I would have qualified given the presence of breast and other cancers in two "second degree" relatives being a grandmother and aunt on the paternal line along with a guideline that where the history is suggested to be following the paternal line a referral should always be considered even if other criteria are not met. There's a lesson here - if you think you are being fobbed off, try checking the relevant NICE guidelines online and produce them to your GP if necessary. But I didn't even know such things existed at the time. I can't change the past. Them's the rubs.


Having cancer has changed my life and my outlook totally. I rushed everything, got stressed out about everything and was far far too precious about things before diagnosis. It has caused me to take a long hard look at my life and my whole perspective on everything. I don't want to sound clichéd and I know these things are so easy to say when one is still feeling relatively well physically, but I am proud of what I've become since facing this diagnosis and I am not sure that knowing about BRCA 2 earlier, although it could have produced a better outcome  for me in that I might have been able to avoid getting cancer, I don't think it would have been enough to make me change my ways as effectively!! It has surprised even me that such a devastating life event has actually improved my day to day attitude and family life. But it's true, and I'm sure there are a number of other cancer sufferers past and present who will vouch for that because once you are diagnosed then in the classic words of Andy Dufresne, you "get busy living, or get busy dying".

Common overeater's excuse debunked

One interesting thing about having this illness is that it has provided me with the opportunity to conduct an (entirely unscientific and un-controlled) experiment in to the suggestion that certain illnesses and tablets "make you put on weight".

I have always been massively unconvinced of this but unable to say anything to contradict the suggestion as I have not been in that position.

Well I am pleased to confirm that I am now in that position as I have been taking huge doses of one of the major "my tablets made me put on weight" culprits, corticosteroids.

Yes, the steroids increased my appetite. Yes, I have been eating more. Yes, I have put on some weight.

BUT it hasn't been the tablets themselves that have made me put on weight! A tablet is a tablet. It does not as far as I am aware convert itself to pounds of excess weight as soon as you swallow it. It may increase your appetite and you may eat some extra food. 

Lawyer speak now - where, ladies and gents, is the causal link? The situation is not "I take tablet, I gain weight". No. There is an intervening event here. The sequence is in fact "I take tablet, my appetite increases and THEN, I knowingly and voluntarily consume more than the recommended amount of daily calories for my size, I gain weight".

I'm not saying that eating is wrong, Christ, whatever makes one happy, life is short. But it has been nice to have my long held suspicions proved right about this common "I take tablet, I gain weight" myth.

Erm, I rest my case. Nobody ever uses that phrase in Court in real life, btw.

<climbs down from soapbox to go and fetch another biscuit>

New blood, please

Well yesterday's transfusion procedure was a marathon. Started off fine, my sister and I loaded up with a picnic from M&S and nonchalantly parked up at the hospital and strolled in to the chemo factory for my 11.30 appointment.

Now I don't like to be at the chemo factory very long as although the nurses are great, I don't like the place and I don't like the smell.

If things go well with a chemo session I can be in and out of there in less than two hours. For this process I knew realistically I would be there at least 5 hours. 

As above, appointment time was 11.30. Helen and I sat there until 1.25pm literally just waiting, then I finally heard one of the nurses wondering aloud where my notes were. Most people might have been miffed at this point but I was just relieved to hear that I still appeared to exist in their eyes as I was starting to wonder.

Ten minutes later the notes are found and I am hooked up to my drip. Oh don't get excited, it wasn't the actual blood. No, the doctor hadn't even been invited to prescribe the blood yet! After realising this glaring omission ie that the blood wasn't there and wasn't jolly well going to be until someone wrote up a script for it, one of the junior nurses was dispatched to get that done.

She reappears with blood, hallelujah. They plumb it in and the four hour transfusion starts at approx 1.40pm, two hours later than scheduled. Clearly the transfusion goes the speed it goes and cannot be sped up so I am majorly discouraged by the fact that I have spent the preceding two hours sat on my arse with no blood dripping in to my veins and now have to spend a further four hours doing the same but with blood this time. Maybe I am being a grouch but I do find it difficult to accept that everyone else who was attended to and had their drugs etc set up before me had an earlier appointment time that day. 

Honestly, I think they might have forgotten I was there. But what would have been the point in moaning at them about it, as that is not good karma for anyone.

The procedure was uneventful save for a slight temperature spike at the start which then went down again after some paracetamol. Also one of the male nurses accused Helen and I of "plotting" behind our curtain, lol. More accurately, I think we were doing what is known as "bitching"... But plotting sounds much better.

Finally got out of that place around 6pm last night - seven hours after arriving. 

Expected to feel completely spiffing this morning but temporarily forgot that erm, I had chemo last Friday. Blood transfusions do not override normal chemo side effects it turns out! Silly me. However I am feeling less lightheaded this afternoon so fingers crossed the red stuff will do its job and see me through to the next chemo cycle.

Twilight and Transfusions

Went to my fifth chemo today. First odd thing to happen was being called in by the nurse straightaway. Usually there is at least a half an hour wait. I assumed this was while my drugs were prepared.

So upon being called straight in I assumed there must be a problem. However, we get in to the room and the nurse starts unwrapping things as usual.

I ask him if all was good to go with my bloods. "Oh yes" he says, carrying on busily unwrapping. I can still sense a massive "But...".

Sure enough he then casually says "BUT your haemoglobin is getting lower so I've booked you in for a blood transfusion on Monday". Boom, just like that!

Turns out my hb levels have now decreased from an acceptable 10 to around 8.9. That level is ok for chemo but they don't want it to decrease even more and  affect my final treatment session currently scheduled for October 4th. Fair enough I suppose. I ascertain that the blood can go in through my port - good thing. I further ascertain that the transfusion will take 4 HOURS!!!! WTF??! I am having two bags of blood. Will it even all fit? Apparently I will feel " like an 18 year old" afterwards. So we shall see.

Other than that I am staying at my lovely friend's house tonight and I have introduced her to the Twilight saga. Worried at first that it might be a massive fail but she loves it and wants to know why I didn't bring the second one to watch in the morning. Result!

Rejected

Well, it finally happened. Despite my best efforts to appear interesting, when head honcho Oncologist returned and saw me last Friday he was clearly so bored of me that he said since I seemed to have coped ok with the first Docetaxel I probably would with the others so he does not want to see me every three weeks anymore. I feel mortified and rejected.

However as it turns out, seems he still wishes to retain a foothold in my life as he subsequently sent me a letter giving me an appointment for November. Hmmm, mind games, eh?

I also totally accidentally hit on a fabulous reverse psychology tactic. Now I am telling you this in confidence and don't just use it willy nilly on every Consultant you may meet. It may turn out to be overkill, or inappropriate to the situation and it won't always work. It is like the bazooka of tactics.

What happened was, he casually asked me whether we had talked about removal of ovaries. I said no we hadn't but that I did want it done. Along with removal of womb and anything else remotely connected with the devil tumour driver, oestrogen. I then very politely said "but of course I'm not sure if I fit the criteria for that". Well. He scoffed at the mere mention of criteria and came over all powerful and impressive and "if I say it shall be done, then it shall be done". So fingers crossed the bank of daddy won't have to end up funding that after all.

We're waiting for the results of my genetic testing first before we talk more about that.

So what else has been occurring apart from my doctor sacking me?

Went for pre chemo blood test yesterday. Noticed today that the nurse has the honour of being the first one ever to bruise the skin over my port. No idea how that happened. Thought that only occurred when looking for a vein.

Fifth chemo tomorrow. On a steroid hyper today after taking the 16mg dexamethasone pre-drug (like pre-drinks but not nearly as fun).

Have also had A COUGH. With all the drama about possible neutropenic sepsis - where you get an infection whilst white blood cells are low - I had kind of forgotten that not every single viral illness will require hospital admission. Have been checking my temperature and keeping an eye on things and we will see whether it goes away on its own.

Finally, I am being referred back to my breast surgeon who wants to hack away at my armpit next. Oncologist said this surgery could not take place until late October once my white blood cells replenish after final chemo. I am now very worried that my surgeon might just book me in before I have had a chance to tell him it needs to be after my birthday drinks on 2nd November. I'm sure he will see me to get a Consent Form signed (at least, I don't remember signing one for this yet!!) and I can sound him out about a date then. Now before you write me off as the sort of pleb who thinks the NHS schedule revolves around them, I'm not. I don't plan many important things in advance so I am hoping that if I do end up having to mention this to him, he takes it the right way and schedules my armpit in accordingly...

Swingball and socialising

Well, it definitely wasn't a placebo. Up until Wednesday I was still waiting for the worst of it to hit. I told a friend on Wednesday morning that although this drug had not produced the hellish nausea and fuzzy head of FEC, I had my suspicions that it was working under the surface on a further "darker" set of side effects.

I was right. By Wednesday tea time I had the most horrendous heartburn ever. My chest felt so odd that I seriously started to wonder whether I was in fact getting some sort of dreaded infection instead.

Then the predicted joint aches kicked in. Bit like someone insistently and frequently prodding you from inside your various limbs. Paracetamol sorted that to an extent and thankfully also dulled the heartburn although clearly one cannot simply continue taking painkillers for indigestion!

My temperature was not rising and I didn't feel feverish so I hoped it was just side effects rather than illness. Rang the ward first thing on Thursday for advice and they were great, said it sounded like indigestion to them too and suggested I ring my GP who could prescribe something.

I didn't ring that day as I wasn't sure whether I would have to go to the surgery and I didn't fancy doing that with two kids in tow. The joint aches continued and I felt justified in sampling my Co-Codamol that evening. Effective stuff.

The heartburn started to improve but I still rang the GP on Friday who was fab and prescribed (new and complicated name coming up) Omeprazole. I didn't even have to go in and see him, brilliant service. He told me that I was never going to get anywhere taking the likes of Gaviscon for this and the drug he has prescribed is an actual acid suppressant so it stops or reduces the production of acid rather than trying to deal with it once is is already there and causing a problem.

Mentioned to my mother in law about this and she said I must get some peppermints in. Yeah, and a bloody voodoo doll to go with it, that will be equally effective. She doesn't believe in pill popping. The Daily Mail says it will kill you, apparently. Not sure of her stance on chemotherapy... #door #horse #bolted #dailyfail

I felt ok on Saturday and went to a lovely BBQ party for my sister's birthday. Was still tired out this morning after all the socialising. A dear longstanding chum whose friendship goes back to our playschool days together was down visiting and popped round for a cuppa and a nice catch up this morning. Then me, Dan and the kids had a chilled afternoon in the garden. 

I finally persuaded Dan to erect the Swingball (ooerrrr missus) on his precious lawn and showed him a snapshot of my formidable skills in that department. 

Also started showing Abbie how to do it and she was really quite good at hitting it once Daddy stopped insisting she hold the bat in her right hand when she is clearly a leftie. Had many hours of Swingball practice as a young girl wearing out my dad's lawn at home before finally being banished to play it in the field at the bottom of our drive instead. And yes, I played it for ages on my own, I was an oddball loner.

It's actually a brilliant stress reliever. Think I may well take it up again now. Or just use the bat to fly swat anyone who annoys me, instead...?