BRCA, breast cancer and me.

There’s a storm. An airplane full of baggage is attempting to land at an unknown destination.  It is circling around trying to find the time and space to land but other planes are in the way.  Above the storm are clear skies.  What does the plane do?

1. Pull up and enjoy the sunshine for a while before running out of fuel and subsequently come crashing dramatically down.  Or,
2. Find it’s space among the busy circling planes, have a bumpy landing, unpack the baggage and discover the new place where it has landed.

I’ve decided to go for option 2.

Maybe this is a cheesy analogy but this is exactly how I have been feeling.  In the last couple of weeks I have felt anxious, confused and I have crumbled on more than one occasion.  Perhaps I have been thinking too much about how and what I am feeling but the honest answer is I don’t really know, all I know is I just feel a little lost.

I am very good at clipping on a smile, waving happily and saying that everything is fine but right now I’m wobbling and I don’t like it.  Today I read through the whole of my blog and I cried.  I spoke to my Macmillan nurse and cried some more.  My husband came home and the tears flowed once more.  I think the last 8 months are finally catching up with me mentally so for my own sanity, and those around me, I have taken the decision to have some counselling.

I know everyone’s view of counselling is different.  A few see it as failure – that you can’t keep control of your life.  Others have regular counselling for decades and it is an integral part of their life.  For me, like many others,  I need it to get over a part of my life that has been challenging and, to be to the point, shit.

I know it’s been a long time since I have blogged.  I have found the recovery from surgery to be excruciatingly slow and I didn’t recover as quickly as I expected.  But here I am 3 months on and if you didn’t know me you would have no idea what I have been through.  I am upright, mobile and my hair is growing back at a rate that a gardener at Kew Gardens would be thrilled with. I am however, suffering with nerve pain but I think I will go in to detail about that in a day or too.

So for now, I will leave you with this short post.  I think this is the most honest thing I have blogged to date.  Please don’t think that my previous blogs have been some kind of fake insight into what I have been going through mentally.  They aren’t.  I have been strong and positive throughout my treatment and surgery but that was the way it was at the time and without realising it, it was an unsustainable mindset.  It got me through what I needed to get through but is now biting me on the bum.  I remain strong and positive but I just need some additional help and guidance to get over the final hurdles.

xxx

 

 

I am now 3 weeks post op and yesterday I was back in oncology to receive the results from Pathology.  All of the tissue that had been removed from my breasts had been examined and the right breast was given the all clear.  This is what we had expected as no cancer had been detected there previously.  And so to the left breast….. drum roll please.  Pathology found just 1mm of the tumour remaining. One miniscule millimeter.  This means no more treatment is needed –  no chemo, no radiotherapy, nada.

The first week out of hospital was tough as I struggled to get in and out of bed, to dress, to wash, to walk and generally do anything for myself.   I also continued to be in pain for most of the time.  I came home armed with a bag of blood thinning injections, painkillers and a wardrobe of flattering attire.  The stunning green surgery knee high socks remain firmly in place and are still to be worn for another week.  Along with these, I must wear a supportive bra and gigantic ‘shaper’ knickers that go over my newly formed belly button and almost as high up as my new boobs.  The latter 2 items need to be worn for 23 hours a day for a total of 6 weeks.  I would post a picture but, luckily for you, I condemn mental torture.  Oh, and on the subject of the Heston Blumenthal style belly button, it now resembles crispy pancetta, a good sign that it is healing.

I have had one major set back since leaving hospital and it came totally out of the blue.  I had gone to get ready for bed and had a very sudden and excruciating pain in my right breast.  I felt like I had been stabbed or shot and was frozen on the spot, completely debilitated.  My trousers were round my ankles as I had just been to the loo and I think they remained there until the paramedics arrived.  I woke both children up screaming in agony, Matilda looked concerned that I was in so much pain, although I was trying to hide it.  Archie on the other hand, strolled casually past the 2 paramedics and clambered over their equipment before announcing that I was in the way of him going to the loo – he was totally unphased by the fact that he was in his birthday suit!   To cut a long story short I ended up in the back of an ambulance being pumped with morphine and hugging the gas and air mouthpiece like it was the last drop of gin on the face of the earth.  I was seen by nurses, doctors and 2 surgeons and was kept in overnight for pain relief before returning to East Grinstead hospital for further investigation the following morning. Typically, by the time I got there the pain had dispersed, and has not returned since.  It was suspected that the pain had stemmed from my nerves – this is not uncommon and accounts for much of the discomfort I currently feel.  But in some instances it can be chronic, as I’ve now experienced.

This aside, my recovery has been painfully slow but I am making progress.  Most of the time I am uncomfortable but am practically painkiller free.  I have ventured out on a few occasions but I struggle to walk far which frustrates me.  I can now get myself in and out of bed and after almost 3 weeks of sleeping in an upright position, I have managed the last 2 nights flat on my back (leaving myself open for no end of comments there).  I am keeping on top of daily physio exercises – the most challenging at the moment is lifting my arms above my head but I can manage it.  I was given a crib sheet when I left hospital, detailing which day to day activities I can participate in after certain weeks.  After 3 weeks of ‘nothing’ I am finally allowed to do something  – dusting!  I can continue with dusting activities for 4 weeks before being allowed to take on the washing and vacuuming.  So at least we will have clean clothes and floors on Christmas day!

So I may be uncomfortable, frustrated, bald and a hobbling fashion faux pas, but I am currently cancer free which means one thing – time for a bit of this that was kindly bought for me by a fabulous friend and is a damn fine drop:

 

 

After day one ending on a morphine high, day two spiralled to a dark place where sleep was the only escape.

Day Two

I woke up needing to cough.  Coughing after major stomach surgery is no laughing matter – neither is laughing come to mention it.  I tried on numerous occasions to suppress the irritation but the little bugger was determined to keep pestering me.  I was put on a nebuliser to try to loosen the offending nuisance and it was suggested that I huff rather than cough.  So after half an hour or so of doing my best big bad wolf impression the coughing urge subsided but I was now aware of a bad pain in my right arm.  After an examination by both a doctor and physio it was concluded that my vein was swollen due to one of the drugs that had been used during surgery.

Later in the morning the nurse came to take out the drains from my breasts.  I braced myself for pain but to my surprise it was little more than discomfort.  I was then visited by the pain team and it was time to try to get out of bed again.  There was the same rigmarole as the previous day, shuffling millimetres to the edge of the bed then slowly and painfully getting my feet to the floor.  This time it was much slower as I was unable to use my right arm to help me push myself into position on the bed or to push myself up off the bed.  I finally made it to a standing position but this time the stomach pain was intense, not only that, I became very lightheaded, then seriously lightheaded, then my hearing went, then I lost consciousness and soon found myself back in bed on oxygen.  I remained in pain for the whole day and to add to the discomfort I developed diarrea which resulted in me being wheeled to and from the toilet as I stubbornly refused to use a bed pan.  It was hideous in more ways than one.

Early in the evening I had the final drain removed from my stomach, I felt nothing at all from this one.   I practically passed out again about an hour later and was left thoroughly fed up.  My pain was by no means under control and I spent best part of the evening in tears.  At times I drifted into a light sleep which was a welcome relief to the nightmare of being awake.

Day Three

A day recovering on a ward is quite a busy one and I had been given a copy of the daily routine prior to admission.

Between 5 and 6pm looked particularly appealing to me but sadly I was not presented with my usual pre dinner gin and tonic I would normally enjoy when at home, but instead I received a steamy mug of tea.  Anyway, overnight my pain had subsided and I started the day with a positive attitude and a healthy appetite. After a breakfast of bacon, eggs and croissants I had my catheter removed and was now completely free from tubes, wire, drains and needles.  This was the first of 3 milestone events that day and it led me automatically  to the second event – I had to walk to the toilet.  It was only about 10 metres away but every time I needed to spend a penny it took about 20 minutes in total and I felt like I had completed a 10k race afterwards.  But I was up on my feet and walking, well shuffling…… slowly.  The third and final event of the day was the grand unveiling of my new belly button.  I had lost my original one to surgery so had one reconstructed in a procedure know as neoumbilicoplasty.  The dressing needed to be changed so I couldn’t resist having a sneaky peek but regretted that decision ever so slightly as soon as I saw it.  It resembled a gastronomic creation by Heston Blumenthal – a minuscule portion of liver with raspberry jelly…. revolting!!!!!  I was more than happy for it to be concealed under a new sterile dressing.

Days four to five

I woke up on day four feeling tired as I hadn’t slept too well the previous night.  Having no catheter had meant two very slow trips to the loo in the night which meant being awake for at least an hour each time.  But still, I was feeling better in general but still in a lot of pain with movement.

The main event of day four was embarking on a quick relationship with a suppository after my bowel action had gone from one end of the scale to the other.  Day five bought two celebratory moments –  a shower followed by being discharged and sent home, both of which felt fabulous.

 

 

 

I slept surprisingly well the night before surgery and was woken from a deep sleep at 6am and asked to drink the remaining 2 carbohydrate drinks within half an hour.  At that time in the morning they tasted twice as sweet and were pretty hard to stomach but at least it was fluid which meant I wasn’t left feeling thirsty.  I took a shower, donned my hospital gown and slipped into my green knee high compression socks (photo as promised).

It wasn’t long before I was called down to the theatre area.  I was taken to a single bay with a bathroom where more paperwork was completed and I was looked after by one of the nurses – I think her job was to keep me warm and calm.  She did this by wrapping me in a silver blanket and talking to me about Christmas.   I guess for her, being in a room with someone with no hair and covered in what looked like tin foil, the turkey resemblance was too great to talk about anything else.

Before long I was being strolled down a corridor and into the anaesthetic room of Operating Theatre 6.  Here I was asked to lay on a bed while my particulars were checked one final time.  A cannula was inserted into the back of my hand and an oxygen mask placed over my mouth.  I took a few deep breaths and the next thing I knew I was somewhere else – I can’t be sure where I was but it wasn’t the room I had just been in and it wasn’t Kansas.  So it was either recovery or back on the ward in the step down unit.  From what I have since been told, I was in theatre for 9-10 hours and in recovery for 2-3 hours after that.

The evening events are quite a blur, I remember lots of poking around my chest, some strange noises, taking sips of water through a straw, my blood pressure being taken and various voices coming and going.  There was pain in my abdomen but no pain at all around my breast area. I recall being asked 2 questions that evening….. ‘Do you want to have a look?’  (at my boobies) and ‘do you want to speak to your husband?’  The answer to both questions were the same, a very firm ‘no’.  Not because I didn’t want to, I just didn’t have the energy to do either.

The first real memory I have is around 6am the following morning when I was visited by the night doctor at the end of her shift.  She came and stood next to my bed and when I looked at her I realised I had seriously bad vision.  It was similar to the experience I had when on chemo so I wasn’t overly concerned.  It was at this point that I became conscious of the various paraphernalia that was now being used on me.  Starting from my feet travelling up, these were as follows;

My green decompression stockings

Flowtron boots – despite sounding like vital fashion attire for a 1970’s disco diva,  these are actually a proper medical piece of equipment that massaged my calves to help prevent DVT.

Blood pressure cuff on my right thigh

Urinary catheter

3 drains each about the size of a pint glass.  The purpose of these are to drain away excess fluid around the surgery site so I had one for each breast and one for my abdomen.

5 cannula’s – these were all in my right hand.  I have no idea what they were all for but for now they were behaving and I was relatively pain free

Finger Pulse Oximeter – to measure pulse and saturation levels

Nasal cannula – one of those plastic tubes to give you oxygen

I also had a heat blanket over the top of me.

I was however missing one item and that was my central line.  We had agreed the evening before surgery to remove it as it was just going to get in the way.

So day one went pretty well.  Early in the morning the Flowtron boots and the heat blanket were removed along with 2 of the cannula’s.  I was visited by one of the assistant surgeons who told me they were very happy with how the surgery had gone.  He explained that they discovered my abdominal muscles were separated, probably from being pregnant.  So as well as the planned surgery they also rectified this by pulling the muscles back together and stitching them up – reunited once more.   I was given the all clear to have something to eat which basically meant that they didn’t see the need for me to go back to theatre.  I celebrated with a bowl of cornflakes.

Later in the morning the blood pressure cuff, finger pulse monitor and 2 more of the cannula’s were removed, the nurse also put on my bra and a binder on my stomach.  This is basically a corset type contraption to hold everything in but after enduring such intense stomach surgery it really wasn’t very welcome. I had been handed a PCA – Patient Controlled Analgesia, when I pushed the green button mophine made is way to the last remaining cannula and relieved most of the pain.  It was put to good use that day but made me so spaced out that I probably dribbled on more than 1 occasion.

Half an hour before lunch was served my nurse came along and announced that it was time to try to get out of bed. The process of sitting up and maneuvering myself to the side of the bed was enough effort to leave me gasping for breath and scrambling for the PCA.  I took a few minutes to regain my composure before final taking the plunge and started the process of standing.  Well, I say standing but it was more of a bizarre yoga pose as I had to hold one hand across my stomach and use the other hand to support myself using the nearest stable object.  To add to this I couldn’t fully stand up due to the pain so ended up bending forward with my bum sticking out.  I then shuffled my feet to the chair that was all of 20cms away and turned the 90° that was required before I could sit down.  A few more deep breaths and I slowly took the plunge.  I wondered who was lowering the seat as I tried to make a connection between it and my backside but I finally made it and it was OK.  I stayed there for a couple of hours before returning to bed exhausted.

The afternoon bought along the physio team, who gave me gentle arm exercises, the pain relief team, who gave me a few options to keep the pain under control and regular visits from my nurse who continued to check the usual ‘obs’ (blood pressure, body temperature and saturation levels).’  She also checked my new boobs at the same time – a gentle touch of each to ensure they were warm and also a listen on an ultrasound doppler to check that the blood was flowing through the blood vessels as it should be – this was the strange noise I had heard through the night before as it was checked every half hour.

Early evening bought another venture into my chair and an objection from the vein homing the cannula.  By 8pm it won the fight and I lost my beloved morphine.  I was switched to liquid morphine instead and was high and happy once more.  Here’s the mophine induced selfie just to prove that point!

Trust me, the smile didn’t last long but I’ll write about that at a later date.  All you need to know for now is that I came home on Sunday (day 5) and all is as well as it can be.

It’s been pretty quiet from me on here for a while.  Partly due to the fact that I’ve not had much cancer or BRCA related stuff to write about, but also because life had returned to some kind of normality.  Normal for me means really busy and it doesn’t leave much time for being a blogger… Plenty of time for being a gin drinker, but not much time to get the old fingers tapping.

This afternoon I have been admitted to The Queen Victoria hospital in East Grinstead.  On approach the hospital resembles a large scout lodge, a single storey non impressive building with just 2 surgical wards, a burns unit and a children’s ward.  From the outside you would never guess that the surgery performed within its walls are pioneering and recognised internationally.  I will undergo my surgery first thing tomorrow,  a bilateral mastectomy with DIEP reconstruction.  This involves removing all the tissue from both my breasts and reconstructing them using fat and tissue from my stomach area.   I will also need to have my nipples removed (sad face, I’m rather attached to those).   The surgery can take anything from 8-12 hours and I will be in hospital for 5-7 nights.

We bought the children to hospital with us. We had told them 2 weeks ago that I would need to have an operation on my boobies to make sure that the cancer had all gone and that it wouldn’t come back. Since then they have both been a bit sensitive, getting upset easily and having mood swings that have given us an insight to the teenage years to come. We thought that showing them where I was going to be might make them worry less, I hope the plan works.

Within 10 minutes of arriving, the admission process commenced.  First on the list was weight and height.  I braced myself for the weigh in…. And then totally cringed at the result.   However, this does actually work in my favour considering the type of surgery I am about to have – the bigger the belly, the bigger the boobs!  After the weigh in I was visited by the anaesthetist who ran through some basic information with me and gave me these to drink:

These are lemon flavoured drinks containing carbohydrates and minerals that should aid my recovery.  I have drank 4 this evening and need to drink another 2 in the morning between 6 and 6.30am.  They taste disgusting, revoltingly sweet…. The kids would love them!

The next visitor to my bed was a doctor who filled in some paperwork and then took a large vile of blood from me.  At the same time the ward nurse was trying to fill in her paperwork about my allergies, diet and when my last bowel movement was.  Then entered Dr Boorman, who I have met on 2 previous occasions.  He is the plastic surgeon that will be responsible for the reconstruction stage of my surgery.  We had a general chat before he pulled out his marker pen and drew on me……. A circle around my belly button, a line that goes from hip to hip, dots down my cleavage and a line under each breast.  My body currently resembles a Joan Miro painting.  As Dr Boorman left another nurse arrived to check my blood pressure, temperature and saturation levels – all good.  She also issued me with my sexy anti-embolism knee socks which I need to wear for 3 weeks….. Photo to follow I’m sure.   Due to my lymph node surgery a few months ago, I can’t use my left arm for certain medical procedures.  This includes blood being withdrawn, cannulas been inserted and blood pressure being taken .  To make this clear to everyone the nurse pulled out her marker pen and did this (I don’t think Miro would approve).

I have just changed into my pyjamas ready to settle down for the night.  If this was a scene in a film, there would be a moment of sadness and reflection as I took off my bra for the last time before losing my breasts.  In reality I couldn’t wait to get the bugger off – it had become way too uncomfortable due to being too tight from my increased weight gain.

I’m checking out for now.  I don’t know when I’ll be ready to send an update after surgery but hopefully you will hear from me soon – brace yourselves, it might be a drug fuelled one!

Just over a week ago, I woke up feeling happy, really happy.  It was Monday morning and I was coming out of my chemo-tosed phase.  Not only that, it was the last time I would have to endure that horrendous state.  What could be better?  I’d done it – I had got through chemotherapy!

Sadly, the feeling didn’t last and by Monday evening I was feeling dreadful.  I was on day 2 of self injecting G-CSF, so my bones were starting to ache.  On top of this I felt agitated, irritated, grumpy and actually didn’t know what I wanted to do.  So, I went to bed – my escape.  If I’m asleep, it doesn’t hurt (for most of the time) and I don’t need to think about it.

As the week went on, I felt worse.  My dose of G-CSF had been increased from 30mg’s per day to 48mg’s and boy did it make a difference.  I was in pain.  Pain that stopped me in whatever it was I was doing, forcing me to hold on to the nearest solid object and breathe like I was in labour.  I was also starting to feel very low, not depressed but just not my usual chirpy self.  I was even telling people that I was having a bad week when asked how I was.  This is unusual for me, even If I’m having a bad day I can nearly always see the light at the end of the tunnel and remain positive.  So what was going on? I dissected myself.  Was it the relief that the treatment was over? Was it hormonal? Was I just being pathetic? Whatever it was, it was pissing me off and I was beating myself up over it.

Late on Thursday afternoon I had an appointment with Richard, my oncologist.  We started by talking about my fairly recent admission to hospital when I was neutropenic and we then discussed the mystery lump under my right arm.  This still hadn’t been investigated although I did have an appointment booked for a couple of days time.  Richard inspected it himself and concluded that it was nothing at all to worry about and there was no need to attend the upcoming appointment.   Relief.  We then talked about the next stage.  I have confirmation that my surgery will take place on the 3rd November, 4 weeks today…. Eek!  Richard explained that the tissue from the mastectomy would be sent to pathology for analysis.  Although he (Richard) is confident that no cancer will remain, there is a small chance that something will remain……. A few of those evil Montgomery Burns cells taking advantage of a warm, cosy, ample breast to hang out in.  If this is the case, I will need to have some radiotherapy post surgery.  No problem as far as I am concerned.

I was asked if I had any further questions so I told Richard how I had been feeling over the past week and questioned if it was my hormones.  I had been told before I started chemotherapy that I would be thrown into menopause and wondered if this was the reason for my emotions this week. Richard them summed up some of the things that had occurred in the last few months that could be causing me to feel this way.  Firstly, there is the initial BRCA diagnoses and being on an 18 month waiting list for preventative surgery, this was followed by being geared up 3 times of surgery but then being delayed.  Then there’s the cancer diagnosis itself and being thrown into the gruelling world of chemo without time to actually think about what you are going through.  During this treatment I have been thrown into full blown menopause and now the treatment is over I have surgery in a few weeks time, huge surgery where I will loose both of my breasts.  Richard concluded with the sentence ‘it is perfectly normal to feel this way’ and do you know what?  He’s totally right, I have been through a lot.  So, I’ve stopped beating myself and have concluded that I have every right to feel a bit down in the dumps, to reflect on what I have been through and what is to come.  It’s a tough road and I’m human, not super human.  So if I feel a bit shit or a bit emotional, so be it.

In total I have had 4 cycles of chemo.  Each time I have had the following drugs given to me intravenously:

As well as the chemo drugs themselves there’s a whole army of auxiliary items that are needed to get you through treatment.  Here’s the bunch that I’ve had on a regular basis:

Some of the drugs are to take away the side effects of the chemo.  Some of them are to take away the side effects from the drugs taking away the side effects – I now know what the Old Lady who Swallowed a Fly felt like!  Other items are eye drops for dry eyes, cream for sore hands and feet, injections to get the bone marrow producing those all important white blood cells and mouthwash (that tastes disgusting) to combat mouth infections.

The box at the back of the second photograph contains the bits and bobs that are required to maintain my central line.  Every Tuesday the dressing is changed and the line needs to be flushed through and thoroughly cleaned.  This is done by a nurse who also checks my blood pressure, temperature and pulse, the whole process takes around 45 minutes and is painless.  Next week I will also be having my stitches removed – I’ll have to post you all a picture after that!

Today I am very tired – very tired indeedy.  I woke up at around 3.30am yesterday (Tuesday) morning and couldn’t get back to sleep. I think this was partly to do with the steroids that I had started taking , but also I was feeling rather excited about the fact that I was about to go for my last cycle of chemotherapy.  This is something I hadn’t anticipated –  that I would be remotely happy to go for such treatment.  This feeling took me a little by surprise.  Last night I had a very broken sleep.  This time very much due to the steroids.  I know this as I can assure you that I am not particularly excited about the way I am going to feel from tomorrow through to Monday.  Due to my excessive tiredness today, this post will have lots of pictures and not so many words!

So, yesterday saw me visit this place for the last time:

I went with my best friend Helen this time (we went for a yummy breakfast treat first):

We climbed up the stairs to the chemotherapy unit:

I filled in the usually form and weighed myself again – yep, up once more but was I bothered?  Nope, I’ve just got used to the gradual increases and will deal with this when I am feeling better.  All was running on time and it wasn’t long before I was plugged in and reading the latest Boden catalogue.  Due to my Neutropenic Sepsis fiasco my chemotherapy dose has been decreased slightly (by 10%).  I’m not sure if this will make any difference to the side effects that I get – I will report back in few days.

Cycle 4 was the quickest treatment I had received and before I knew it I was saying thank you to the lovely nurse that had looked after me for this session (Looks like another couple of pounds found their way into my face and boobs during the 2 hours I was there)!

I also managed to catch a couple of the other nurses to say thank you and goodbye to.  The staff have been amazing so to thank them I made a little cake:

I also made one for the team on Howard One – the oncology ward that I had been admitted to less than 2 weeks before.  When I arrived there, I didn’t see any of the familiar faces that had been on duty when I was there.  I explained that I had been so well looked after and just wanted to drop a thank you card and cake around to show my gratitude.  I also asked if my old room mate was still there – she was so I asked if I could say a quick hello.  So I popped in to see Julie, my 77 year old ex roomy.  She seemed over the moon to see me, held my hand and we had a good old chin wag.  She was in good spirits and is hoping to go home soon once the appropriate care has been put in place for her. I really hope this happens soon for her.

I said my goodbyes to Julie and then nipped back out to the nurses station to say one last thank you and goodbye.  One of the nurses told me that she was reading my blog – I was thrilled. Despite having not being in their care, each of the nurses on duty that morning took a few minutes to talk to me, to ask how I was feeling and to just have a bit of banter and a giggle to be honest.  When I departed I did say that I hoped not to see any of them again, not on that ward anyway!

Now, all I want is sleep. I hope to be in Sandman land very very soon and if I’m not I’m going to be one grumpy bugger tomorrow so watch out Hove.  The coming days will be what they will be, unpleasant, gruelling and miserable but it will be for the last time.

Night night all. x

With my new central line in place I arrived at the hospital happy and ready to receive cycle 3. I had missed a dose of steroids the previous day so had to play catch up during chemo, this meant that I would be wired for the next 36 hours. Oh bugger!  The central line was brilliant. It left me with 2 hands free to drink tea, eat chocolate brownies and play backgammon! But most importantly it was pain free. I am actually quite happy to say that the whole process of cycle 3 itself was rather boring.

As for the after effects this time round. The steroids resulted in me watching 4 episodes of Orange is the New Black from around 2am and I got less than 3 hours sleep in total that first night.  I was in bed by Friday lunchtime feeling pretty awful and by early evening I felt dreadful and became upset. I was upset because I didn’t want to endure Saturday and Sunday which are by far the worst days. There was nothing I could do but get on with it.  To my surprise it wasn’t as bad as anticipated. Yes, I felt atrocious at times, the nausea was worse than ever and the dizzy spells were intense. But what I did find was that it came and went in waves and I wasn’t under the duvet for the whole of the weekend. I even managed to make an apple crumble with the kids on Sunday.

By Wednesday I was on the school run but had a bit of a sore throat and felt like I had a bit of a cold brewing. This didn’t come as a huge surprise as when the kids go back to school they nearly always pick up a cold.  By Thursday evening I was in the mists of a full blown cold – if I was male, it would definitely be the flu! I had been monitoring my temperature all day and it had been consistent at around 36.5° but it was now steadily increasing. Within an hour it hit the all important 38 ° the point at which I need to call the hospital. I wasn’t surprised when they told me to head to A&E with an overnight bag. So off I set, a little scared as I didn’t know what to expect and I knew that I could actually be really quite ill so time was of the essence.

I arrived and spoke to the lady at reception, she said she was expecting me and that my room was almost ready. Sadly I hadn’t taken a detour en route and was not at the Hilton, I really was in A&E. I still had to see a triage nurse but was told I couldn’t wait in the main reception area and would need to stay where I was until I was asked to go through.  Within a few minutes I was called in to see the next available nurse, much to the annoyance of the folk that had probably been in the waiting room for hours on end. I was quickly questioned and then marched along to ‘my room’. Within half an hour I had been seen by 2 nurses, a doctor, had given a urine sample, had blood taken for both testing and for cultures and I had also been given intravenous antibiotics.  This was when the central line came into it’s own – no messing around with cannula’s in veins that don’t want to play ball.  I was then left alone to listen to the man next door shouting for the next 45 minutes while my blood samples were processed.

When the nurse returned she was wearing a yellow plastic bib over her uniform. She announced that my Neutrophils were at 0.1 and I would have to wear a face mask if I needed to leave the room. In English? Neutrophils, pronounced New-tro-fills, are not a form of Botox as it sounds, but are they are the type of white blood cell that result in you being neutropenic if they are very low (as I was after cycle 2). To put this in perspective, the normal range of Neutrophils in a human are between 2.0 and 8.0 so at 0.1 mine really were very very low, well they actually couldn’t really go any lower.  The purpose of the yellow plastic bib was to protect me from germs on the nurses uniform and the reason for my mask was to protect me from everyone’s germs when I left the room. It was agreed that I would need to be admitted into hospital as I had Neutropenic Sepsis.

While waiting I was given an ECG which was all normal then I was pretty much left on my own.  It wasn’t long before I needed the loo. I would have to don the mask so I tentatively put it on, tied it up and opened the door.  Shouty mans decibel level increased 3 fold as I stepped into the mayhem that is A&E.  Dressed in a gown and mask I felt like I was in an actor in a scene from ER. I was ,of course, the surgeon about to perform a life saving operation. Once I got to the bathroom and glimpsed in the mirror, the reality was that I looked totally hilarious and there was nothing else do than take a selfie. Dr Ross wouldn’t have given me a second look, unless he was in a desperate need of some belly laughs.

It was quite a wait before I was fully admitted and taken to a hospital room where I was checked over once more and hooked up to a saline drip.  By the time I finally lay down and switched the lights out it was 3.45am and I was totally exhausted.  I was woken up at around 6.30am for my observations to be done – temperature, blood pressure and heart rate.  My temperature was still high but all else was OK and I was given more intravenous antibiotics.   I had been given my own room with an en suite bathroom.  I also had full access to a telephone, TV, films and internet and in the corner of the room was an exercise bike, dumbbells and a few other pieces of equipment.  I did feel like I had been quarantined but soon got used to staff coming in with their yellow bibs on and then disposing of them in the bin on the way out.  The room was cleaned from head to toe while I was there and even the shower curtain was changed after I had managed to use the shower.  The stay in this room was temporary and in the early evening I was moved down to Howard 1 ward which is the oncology ward.

The ward only has capacity for 9 patients in total and I was in a bay with one other lady.   I was hoping to get a good night’s sleep but at bed time my blood pressure was very low so it needed to be checked regularly through the night – which meant waking me up….. a lot.  By around 5am (Saturday morning), it was still low so it was decided that the speed of my saline drip would be increased to give me some extra fluids.  I think it was set to it’s fastest setting as it sounded like there was a train in the room, it also caused the line it was travelling down to shake furiously and I feared that it would pull out my beloved central line.  15 minutes later, with drip and line still in tact my blood pressure was still low so I was given a different type of antibiotic (Gentamicin).  Within a couple of hours my blood pressure was more or less where it should be.  So out of the 3 observations my temperature and blood pressure had both been abnormal and received special attention.  My heart rate was obviously feeling rather left out so it now decided to join the party.  It did so by presenting me with a resting rate of 115 beats per minute (it is normally between 75 and 80).  It received no special attention, got bored and settled itself down to around 85 beats per minute.

From Saturday morning my health improved rapidly and by lunchtime I was even able to go for a little walk to the shop.  Things continued to improve and by Sunday afternoon I was well enough to be discharged with 5 days worth of oral antibiotics.   Before this admission, I had imagined that spending time on an oncology ward would be depressing but that is far from the truth.  Yes, there were some very poorly people there but there is a lot of positivity, strength and some great humour.  As for the staff, I think if had I taken that wrong turn on the way to A&E, The Hilton would have struggled to provide me with care so good.  Every member of staff always had a smile on their face, they always took time to talk to me and would go out of their way to make me feel comfortable.  If I needed painkillers for my pounding headache and achy bones, blankets for my uncontrollable shivers or even a cuppa, they were there within a matter of minutes.  I left the hospital at around 4.30pm and I felt like I was leaving behind a small family.  I can’t thank them enough for the hard work that they put in, they are one amazing team.  Oh, and I left that hospital with a Neutrophil count high enough to keep a regiment of the army functioning.  Let’s hope that lasts ready for my last cycle of chemo next week.  Yep, MY LAST CYCLE!!!!!

I am aware that it has been a while since I last wrote so without further ado lets crack on with one of last weeks main events. After 3 days of self injecting my bone marrow had been given a significant shake up to produce enough white blood cells for me to have my central line fitted.  Central lines are invasive and prone to infection so to minimise the risk I had to take a few precaution by using the following:

In the bottle is a surgical scrub which I washed in for 5 days prior to surgery.  Along with this is a gel for my nostrils, the purpose of which is to (and I quote directly from the box)  ‘For moistening, cleansing and decontamination of the nasal vestibule’.

I headed to the Sussex hospital where I checked in at the kidney unit.    I was led to the day unit where I was given a comfortable reclining chair and was very well looked after by a fabulous nurse called Jean.  She took my blood and while we were waiting for the results she made me a nice cup of tea and even bought me biscuits – what a gal!  The blood results only took half an hour so before I knew it I was donning a lovey blue hospital gown and was been whisked upstairs where I met the surgeon.

The following video shows simply the procedure that I underwent.  It is only 2 minutes long and is not squeamish!

Doesn’t that look easy?  Now for what actually happens.  Firstly, you need to sign a consent form after the risks are explained to you.  These are:

Infection – this is very normal with all surgery.

Accidental incision into an artery – this sounded awful and images of squirting blood entered my mind.  However, I was informed that bleeding can be easily stopped by applying a good 5 minutes of hard pressure.

Accidental incision of my lung – I was totally unaware that the top of you lung sits near to your collarbone.  If an incision does occur your lung will collapse, you would need further surgery and an overnight stay in hospital.  Suddenly the incised artery didn’t sound too bad.

Misplacement of the line – basically when the line has a mind of its own and goes the wrong way.

After signing I was asked to lay on the bed and I was hooked up to a pulse monitor.  The surgeon and the 2 assisting nurses then got the items needed ready,  checked and placed on a trolley.  Some of the items I was familiar with, some I had never heard of.  When the word scalpel was mentioned I think my pulse rate went through the roof – it was the reality that I was about to be cut open…. while awake……eek!  A sheet was placed over my face and I was told it was sterile and therefore couldn’t touch it.  If I needed to scratch or itch any part of my face I had to ask one of the nurses to do it.  Why is it when you are told that, you automatically become itchy in the exact place your not meant to touch?  I was then covered from my jaw line to just above my right nipple in iodine solution – you know that lovely brown liquid stuff that makes you look like you have a really bad fake tan.  Whilst all this was going on the procedure was explained to me and I was told that the worse part would be the local anesthetic – he wasn’t wrong.  The area that needed numbing was pretty vast and I lost count of how many injections I was given, it felt like someone had set a swarm of bees on to my chest.

In order to make my vein nice and juicy I was tilted back on the bed to a head rushing angle.  At first it felt like I was going to slip off the end of the bed and on to the feet of the surgeon.  I didn’t.  After a few minutes I really started to regret the spicy chicken salad I had eaten 90 minutes earlier …. and the lovely cuppa with digestives that the wonderful June had given me.  Luckily all liquids and solids remained safely in my stomach and before I knew it I was back in a comfortable, none vomit inducing, horizontal position.  With the anesthetic in place I felt no pain but just lots of tugging and pulling which is a somewhat strange experience but not unpleasant.  The surgeon was excellent at warning me about what I should expect to feel and the nurses constantly checked to see if I was OK, one of them even came to hold my hand at one point – bless him! Within 30 minutes I was all stitched up, on my feet, and being walked back down to the day unit where I had to wait to be taken to x-ray.  I felt rather embarrassed to be put in a wheelchair for this part as I was perfectly capable of walking, but I was told it wasn’t permitted so just enjoyed the ride instead.  With the x-ray done and confirmation given that the line was sat in the right place, I thought it would be time to head home.  No such luck – I was still bleeding so had to stay a bit longer.  The nurse changed the dressing and asked me to apply pressure for 5 to 10 minutes.  This process continued for about an hour before the surgeon was called back down to check on me.  By the time he arrived, the bleeding had calmed down so I was patched up one more time and sent on my way.

It was now early evening and the local anesthetic was wearing off.  I felt no pain around the exit site but the area around my collarbone was a bit sore.  As I had omitted my afternoon nap it wasn’t long before I needed to yawn but I wasn’t confident about fully opening my jaw as I thought it would hurt my collarbone too much.  So I took the decision to yawn with my mouth closed which, if you have ever tried it, is pretty impossible.  What you end up doing is clenching your teeth but opening your lips, this in turn causes your eyebrows to raise up and your eyes to bulge slightly.  With my bald head and slightly bloody bandage on my chest I wasn’t really the sort of person you wanted to bump into in the car park that evening.

But all’s well that ends well and I made it home without further incident.  I am happy to say that the central line is functioning as it should do.  It looks a bit strange but most of it is kept under a waterproof dressing.  Matilda isn’t too sure about the tubes and prefers it to be concealed under my clothes.  Archie says it looks like worms coming out of a big plaster – I think it looks like a good option for intravenous gin – judge for yourselves!