5 down 1 to go!!

Hello All!   Yesterday I had my 5th dose of chemotherapy, so only one more to go! Yeahhharrrrr!!  I was dreading having it, starting off the cycle of side effects again was not something to look forward to especially after the 4th I had blurred vision for 3 days, which was most disconcerting.    I told my Oncologist about this and he changed my anti-sickness drugs around (let me have the more expensive one!) and so far, touch wood, the blurred vision that should have come on this morning, hasn't happened which is such a relief.

During my treatment yesterday I shared a room with a lovely inspirational lady - age 75, married to an 85 year old man suffering with parkinson's disease.   She was there receiving chemo for lung cancer and it was her first dose, so it would be fair to say she didn't really know what was about to hit her.    She said "I can't sit around and take it easy after this, I've got a husband at home with parkinson's who needs me to get him up, bathed, dressed every day, he still wants his meals on time!"  I said surely she had someone to help her with all this, but no.  She has 2 children, one living in the US and one in Germany.   Her daughter in the US visits her more than the one in Germany!    I said, well what about friends, she just shrugged her shoulders and said well the neighbour has offered to help but I'm not very good at accepting help.  I told her, she MUST accept some help!  She is due to undergo combined chemo and radiotherapy at the same time, and she is still hoping to go on her cruise around the UK booked for mid July!   I didn't like to put a downer on her hopes, but I'd be amazed if she felt well enough to go ahead with the cruise.  She asked me where she could get head scarves from, I replied the internet was the best place but she doesn't like using it for purchases so she'd need to get to the shops.  She doesn't drive and only ever visits one small town that has no department stores.  It's a wonder how anyone can get by living like that!   I asked what she used to do for a job.   She replied that she didn't start work until age 45 as she was raising her 2 children, and apart from that it just wasn't the done thing.   It was a slight on the husband if a woman had to go out to work "couldn't he provide properly for her and the family?"  - my how things have changed!   The job she chose to take at 45 was caring for mentally ill people, visiting them in their homes.   She told me a few funny stories, one where she spoke of a cross dressing man who had a desire to wear ladies french knickers but he couldn't understand why his meat and two veg would hang down either side of the crotch seam!  She did laugh! Another about an old woman who laced every sentence with the F word - it was quite a surprise and very amusing to hear such words from a 75 year old.

This all cheered me up and took my mind off the bad experience I had just suffered when the nurse put the cannula in the front of my wrist to administer my drugs - OH MY GOD THE PAIN!!  It was searing pain when she put it in and I told her but she thought it would wear off, with the help of a heat pad to dilate the vein.  So I stuck with it for 10 minutes or so, she was pleased that it all appeared to be working properly - they hook you up to some saline solution and flush it through seeing if it 'bleeds back' properly and it did, but it still bloody hurt and I new I'd be stuck with it for about an hour or more.  I did express how much it hurt and I was in tears, so she said she'd get someone else to have a look it.   Another nurse (more senior I guess) came in and said right lets take it out and try somewhere else - phew! but by then I was really worried it would hurt just as much going in elsewhere. Anyway, she did it and all was fine!    The new place for the cannula was the inside of my forearm - much more comfy.  I can tell you no-one is going near my wrist again with a needle!!!  Its the second time I've had a needle in near the bones, you know, the nobbly bits on the outside of your wrist and both times it was complete agony!  Sorry I can hear you all wincing - LOL!    Needles don't bother me, but pain does.

So after a good few hours sitting down being drip fed potent drugs and chatting, I came away feeling quite rested and actually spent the rest of the afternoon baking cakes for the Jubilee celebrations.   Admittedly by the evening I was totally knackered and slept really well, thank goodness.   I've taken my last lot of steriods (8 tablets a day for 3 days), and now just need to remember my anti-sickness tablets (2 tablets 3 times a day), start my GCSF injections tomorrow for 5 days and start taking anti-biotics on Tuesday (2 a day for a week)!     There will almost definitely be a few sleeping pills popped during the next week too - I figure 'in for a penny...' with all these drugs the odd sleeping tablet isn't go to do me any harm.  Oh and the ibuprofen of course to help with the muscles and joint aches which will start in a day or 2.  Mmmmmmm lovely!   

BUT for today, right now, I'm just pleased that I can see clearly and concentrate well enough to type this.   My DH has taken the kiddlies swimming so I am enjoying some peace and quiet.  This is after he has cleaned the house, done a huge pile of ironing and done 2 loads of washing - he really is AMAZING and I love him so much :).   

Oh, I almost forgot... I have hair growth!!! Whoop Whoop!   It's only a small amount but its definitely growing, I am cultivating a fuzzy chick type hair 'do'.   But sadly the armpit hair is resurfacing too. Sigh.  I have really appreciated these couple of months of no de-fuzzing.  My eyelashes and eyebrows have taken quite a bashing recently, so hopefully this will ease off now.  I have found some great makeup for filling in your eyebrows though, called Eylure Shape and Shade Brow Palette (at Boots).

Right I think I've gone on enough.   My union jacks are flying and I wish you all a wonderful, celebratory Jubilee weekend with your families and really hope the weather doesn't bugger it all up for us! xxx

The A&E dash

I was going to write about my Chemo Brain - its worse than 'baby brain'!  But then last night I was taken ill, and have spent all morning today at A&E so thought I'd tell you about this little adventure first!
I have no idea whether I picked up a tummy bug or got food poisoning from eating a rotiserie chicken (not very wise on my part, but oh SO tempting!), but at about 2 a.m this morning I was woken with a start, made a quick dash to the loo and was violently 'ill' from both ends - sorry too much info I know.  But this is the front line people!    As today is my 12th day since my 3rd dose of chemo, I am on neutropenia alert.  My Fast Pass (which rushes us chemo patients through the A&E waiting room) states you must attend A&E if you have diarrohea.  Or if you have a fever, which I did.   Before we rushed off up the hospital, I did phone the Helpline number and an Oncologist rang me back.  He said to take my anti-sickness medicine and see how I went.   So I did that and wasn't sick again, but then my temperature spiked up to 37.9c.  In these situations its really hard to know what to do for the best.  If you go to A&E you know you can expect to be there, waiting, for the best part of 4 hours, they might even admit you in which case you are there for 3 days or more, and no one wants that do they!! But if you stay home, hoping to ride it out, it's quite scary, as you don't really know how your immune system is coping with whatever you've got and in the middle of the night, I have on a few occasions been too scared to sleep in case I don't wake up!   So really, if I have any of the symptoms mentioned on my Fast Pass I know that doing the right thing and getting to A&E a.s.a.p has to be done - it's just such a pain in the arse!!  I am very lucky to have some fabulous friends locally to me, who I know will help with looking after the kids when me and DH make a mad dash for the hospital.  This is such a relief.   Good friends and family (of course) are worth their weight in gold.   Without wishing anything bad to happen to my nearest and dearest, I hope to one day, be able to repay the love and support I have received from them.

One last thing - I think Nurses are amazing!!! There was this male nurse at A&E who was just so cheerful, courteous and GOOD at his job, that I couldn't fail to be in awe of him.   When you think of what he has to deal with on a daily basis, it's amazing that he can maintain such a positive, happy attitude.  It must be a very rewarding job, not in monetary terms of course, but rewarding to the soul.   I came away thinking maybe I should retrain to become a nurse, but truth is, I definitely don't have the stomach for it!!

Chemo - It's a Rollercoaster ride!

It’s now 3 days since my first chemo session.  Looking back on it I’m thinking it wasn’t that bad.   The actual administering of the drugs by intravenous injection took about 30 minutes with the nurse slowly pushing in the plunger on each syringe to allow the drugs to mix in with the saline solution being fed into my veins.    The drugs had been kept in the fridge and some were coloured red.  This definitely looked and felt like poison being pumped into me especially as I could feel the cold creep of it spread up my arm.  Not very nice, but essential nonetheless.   The veins in my wrist started to ache and hurt a bit so the nurse laid a heat pad over my wrist which really eased this discomfort.

The worst part was getting used to wearing the cold cap.    Before putting it on you have to make your hair wet with leave-in conditioner, this helps the cold to get to the roots easier.    I was sat in a very comfy chair, with special squishy seat pad, I would think specifically designed to avoid pressure sores on your buttocks!  Then the nurse put the cold cap onto my head.  It was already filled with freezing gel.   I thought “ooh, chilly but not too bad”, then she leant down on it more to make sure it fit really well and then she bought down this really tight strap which fit very snuggly under my chin.  See the glamorous pic – this is my best brave smile.  

  

I pretty much felt like I had my head in a freezing cold vice, the strap cutting into my chin underneath.  I new it needed to be tight though.  My eyes started to stream and a few tears rolled down my cheeks.   Deep breaths were needed.  A dear friend of mine had reminded me of the power of positive thinking and visualization.   I tried my best to think of warm summer breezes and a happy picnic scene, ripe juicy fruit, fat buzzing bumble bees, the kiddies laughing with all my troubles behind me.  It did help, but not initially!

 I wore the cold cap for about 4 hours. All in attempt to hold onto my crowning glory.  After the first hour, I barely noticed it thank goodness.   The pipe that links it to the machine is insulated but I asked for a towel between it and me to stop my shoulders from freezing.   Anyone going to give the cold cap a go I would say wear some very warm and comfy clothes and seriously, brace yourself for that initial half hour, it does get better though.

 I spent the 4 hours in my squishy chair reading magazines (all bought for me by friends), a book (Eat, Pray, Love by Elizabeth Gilbert) and listening to some tunes on my beloved iphone.    I had a brief chat with the nurse.  This didn’t really go that well though as she asked “Do you have children?” I nodded but was unable to answer properly as my resolve to be strong promptly crumbled and I blubbed into my hands, then searched frantically in my handbag for a tissue.  Its tricky to do stuff with your left hand if you’re right handed and your right hand is out of action.   I’m having all my drugs into my right hand as they can’t use my left because that’s the side my operation was on, and I’m a lymph node short on that side.   It’s okay though, this blubbing was bound to come at some point during the day.  I got over it quickly enough.

The room where I was having my chemo is on the 6^th floor of the hospital I was born in. All those years ago.   The room has large picture windows with a view of the sky, luckily blue on that day and planes taking off from the airport.   There were 5 of us patients that morning, receiving our life-juice.  I was the youngest there by far.   The only other woman patient sat across from me.  She was in her 60s I would say and her daughter about my age kept her company.   I clocked her wig as soon as I saw her.   It looked okay but you could just tell it wasn’t real hair and was quite short and spiky.   She was very proud of it and told me how the NHS do great ones (which you pay a £60 prescription charge for).   During my first half hour with the cold cap, she was being given her chemo drugs and I heard the nurse ask her if she had tried the cold-cap?   Her reply was “No why bother, it’s all going to come out anyway!”   I’m assuming she meant to say this quietly but unfortunately I heard.   Oh Marvellous! I cried (again) in my head.  Why am I doing this to myself?!

The main reason I will persevere with keeping my hair is for my children.  I think I’m pretty much okay with the hair loss now, but I just know that my kids are really quite freaked out at the idea of a bald mummy, they mention it every few days and they are definitely worrying about it even though I have reassured them it probably won’t happen.  And even if it does, they don’t have to see it.

The hospital staff looked after me very well that day.   I had hot drinks and a hot lunch – although the veg had been cooked to death, all nutrients sapped from it and poured down the plug whole with the cooking water no doubt!  Why does hospital food have to BE like that?!

They sent me home with a bag of more drugs to take.   Mostly to stop me being and feeling sick.   I’m on my last day of steroids today, thank god.  I am sure it is these horrible things that have made my tummy blow up like a balloon, my jeans no longer fit me!  Here with go with another side effect of chemo – weight gain.  Oh joy.   I am doing my best with being active.   I’m under strict orders from loved ones to get out and walk every day.  Which definitely lifts my mood, but is rather tiring!  I am such a lightweight now.  Talking of my mood, this has gone up and down like a rollercoaster.   I hate feeling sorry for myself but sometimes I really struggle to just stop feeling like I’m in a miserable black hole.   Everyone is being so positive.   “Yay, you’re one down – only 5 to go!” Yipp-yarr (dead pan voice) I cannot wait.

The best thing that’s happened in the last 3 days is watching my little family all pull together around me, hubbie and the kids all cleaned the house yesterday and are being so sweet.   Also I’ve signed up to do Race for Life on 23 May 2012.  This will be one week before my last chemo session, so I figure I’ll be good to go at that point. It’s only a 3 mile walk (I might jog a wee bit if you're lucky)!  If you want to join my team or sponsor me, please click the button at the top of the page.

 I'm visiting the hairdresser on Tuesday, so watch this space for news of my new do!!    It needs to go a bit shorter so that its easier to wash and care for - no hairdryers and minimal styling products allowed.  Should I take the plunge and buy a wig, or just hope for the best?!

Keeping a cool head

I am starting my chemotherapy tomorrow.  There is little else on my mind at the moment, it pretty much consumes me, day and night.   I’ve been struggling to get off to sleep due to the cogs whirring and going into overdrive as soon as my head hits the pillow.   I thought that the Oncologist told me to steer clear of any health supplements and alternative remedies. So, being a good girl I had put my Neal’s Yard Remedies “Sleep” roll-on to the back of the bathroom cabinet and ever since have had trouble getting off. Today I spoke to my Breast Care Nurse and she said I was mistaken (easy to get all that info muddled up) and any essential oils used externally would be absolutely fine!  I am SO relieved that tonight I can get back to my old habit of rolling the aromatherapy blend to my pulse points.   If this doesn’t work then I am also now equipped with some hard core sleeping pills from the Doctor!

 

I digress, the main point of this post is to talk about hair loss.  This is the root (pardon the pun) cause of my anxiety.  As we all know if you have chemotherapy you are very likely to suffer hair loss (and not just the hair from your head!).  However there is something that can be worn to prevent this … the amazing and rather attractive (see pic) Cold Cap.  The basic idea is that you wear the cap before, during and after receiving your chemo drugs, during which time it freezes the hair follicles and thereby prevents too much of the chemicals getting into the root and hair shaft.  To learn more about this process please visit this link:

 http://www.paxman-coolers.co.uk/index.php/how-it-works/cooling-caps/ 

My local hospital is lucky enough to have one of the Paxman cooling machines and it looks very new and hi-tech, I was pleasantly surprised when I saw it.   The cap reminds me of a jockey’s helmet and so I shall imagine I am riding a horse running through open fields whilst I am using it!  Mad woman.    If it works, I get to keep most of my locks, not that my hair is particularly special, it just IS to me.  The fact that I will have to sit with my head at -5 degrees for about 4 hours is rather worrying, but I have read that people just forget they are wearing it after the initial shock – I suppose it numbs your brain cells too.    Best case scenario is my hair will thin a little bit but I may still opt for that short elfin hair cut.  Worst case scenario is in about a months’ time I will lose the lot and behind closed doors only, look like an egg head.    It’s really important that whilst I have hair, I treat it as gently as possible, washing it less with very gentle shampoo – I’m aiming at once every 4 days, no hairdryers, no styling products, no hair straighteners!!!  So my hair will look a total (greasy) mess, even if it is my own – are you all screaming “Oh just shave it off and wear a wig!!”?  I am thinking that now.  You can see how I go around in circles, in my head throughout the night.

So in order to prepare for “hair today – gone tomorrow!” (that’s bad isn’t it) I have done the following; bought a silk pillow case – your hair is less likely to be rubbed off onto this than the usual ones; bought some leave in conditioner to wear during treatment (the nurse suggested this) and bought a few different delightful hair wear options, my favourite being a flowery cotton bandana thing that makes me look like ‘Gypsy Rosalee’ complete with my gold hoop earrings.   My BF says I am lucky I can pull off the hair scarf/bandana look, hats generally suit me, so thank heavens for small mercies!

 During my headwear shopping trip I encountered a couple of strange attitudes.   In one shop I asked the sales assistant if a particular scarf was square (you couldn’t see whilst it was all neatly folded on a hanger) and she looked rather annoyed and frankly like she was having a bad day – although the shop was quiet.  She helped by unfolding the scarf to check it out and then enquired what I needed it for.   I thought about lying (which is rarely my style) and then it just popped out, “well actually I’m starting chemo on Thursday so I’m looking for suitable head gear” queue sharp intake of breath and “oh I’m so sorry” and her manner completely changed towards me, she warmed up considerably.  In another shop – a hairdressers actually, one that specializes in weaves for afro hair and hair extensions that young trendy glamorous gals go for, I spied a rather quirky, fun, long pale pink wig, and thought for a laugh, at the right price, I’ll buy that.   I stood by the counter looking at the wigs, trying to find a price and then literally stood and looked around the shop blatantly needing assistance.  The woman at the cash desk just ignored me and carried on chatting to her mate who was doing someone’s hair.  There were 3 or 4 people there working.  They ALL ignored me whilst I stood there like a plum. Yes I am white and knocking on 40 but I had every right to be there, hankering after a pink wig!  I should have spoke up, but instead I just thought sod this, and walked out!!  I bet if I had had the confidence to speak up and then told them why I wanted a wig, I would have encountered a swift change in attitude once again.   And that’s a sad state of affairs don’t you think.

Ooh I’m in danger of sounding like my BF, so I will leave it there! (love you Tash)

Think of me tomorrow, riding my horse!   I'll be back again soon to let you know how it went.

 

AT LAST - SOME GOOD NEWS!!

It's been 1 week and a day since my operation.    I have been in pain and discomfort for most of the week, whilst my wounds are healing.    It's not sharp, constant pain, more like pinchy, twisting, uncomfortable twinges.   All my friends and family have rallied around me.  I cannot quite believe the amount of flowers, cards and gifts I have received.    So many lovely thoughts and things, that it's almost worth getting breast cancer for!   Joke - you've got to laugh haven't you.    I've spent most of the week chatting, laughing, crying, drinking tea, eating cake and chocolate and generally sitting around recuperating, whilst my beloved DH has been doing EVERYTHING else.   The school run, the ironing, the housework, the cooking, the shopping, bath & bedtime for the kids - you name it and he has done it. If it were up to me he'd be given a Knighthood for all that he's done and will continue to do (no doubt).   And I love him, with all my heart.    Of course, what we have really been doing all week is just waiting.

Waiting for today to come, when I would receive the results of tests they've run on the lump and sentinel ymph node which Sam the Man (my consultant surgeon) removed.  When I woke this morning I had a strong feeling that today was a turning point.  Life would not be the same after wards.  Yeah I know it's already changed significantly in the past weeks.   The appointment wasn't until this afternoon so this morning I went out for walk to enjoy the glorious blue sky and it was so warm I regretted wearing a coat!   I thought it was simply impossible to receive bad news on such a beautiful day.

Okay, now I'll cut to the chase (I know you are all busy) - we got to the hospital and were very soon called in (yep no waiting around for an hour - amazing!).   My DH and I entered the examination room and the nurse asked me to strip to the waist (I'm used to this now), then very quickly the room was filled with 4 more people. Yikes! I had an audience.  At this point alarm bells started ringing - did they really need this extra back up to break the news to me?  There was the Consultant (Sam the Man's boss), the Macmillan nurse, the clinic nurse, and another woman, who turned out to be a doctor (in training I think).   The Consultant takes a quick look at my wounds and is very pleased with them, they are healing nicely, I've done "really well".  He might as well have patted me on the head!  So then I get dressed and go into the little office next door, for the main event - THE RESULTS!  (queue X-Factor style dramatic music).......I braced myself.      He says that the tests on my lymph node are negative! and the 'margins' on the lump are also clear!  The cancer has not spread.   WHOOP WHOOP!! I nearly jumped for joy.  This is such a relief.  He could well have been saying the opposite and booking me in for more surgery.    I consider myself oh so VERY lucky to still have 2 whole breasts.  Me and 'the girls' have had a narrow escape.  Finally, after a shitty 2011 and even shittier start to 2012, we get some GOOD NEWS!!!

This is not the end of the journey though.   I have an appointment with the Oncologist next Thursday to discuss my treatment plan which will be chemotherapy first, then radiotherapy - all of which should be done and dusted by oh..............July or August.  So watch this space if you want to find out what a Cold Cap and a Chemo Caddy is!! xx

Just a sharp scratch.........

If you read my first post then you'll know that on 15th Feb I had an operation to remove the lump in my breast.  Sam The Man (my consultant) removed the horrid lump as well as the 'sentinel lymph node' in my arm pit.   He has then sent it all off to the Lab for testing and hopefully, this Thursday, I will find out that the lurgy has NOT spread anywhere else and then I can get on with phase 2 of my treatment, which will hopefully be Radiotherapy.  I say hopefully, cos if I'm going to have Chemotherapy then I will have to have that first.  And, I'm getting vibes that Chemo will be the worst part of my 'cancer journey', making me more sick and tired and the disease itself has yet.

This is just a quick post to say my operation went quite well really.  All the staff at the hospital were really lovely, quite jolly and did everything they could to make the whole experience less traumatic.  The Day Surgery Center was clean and newly kitted out.  The only thing that has become a bug bear of mine is when the Nurse says, shortly before jabbing you with a needle, that you should expect "just a sharp scratch..."
A sharp scratch is something you get from a playful cat, NOT the seering pain of a pointy, long, hard, metal (sometimes FAT) needle!!!    I realise I need to get over this, as I have many more sharp scratches ahead I am sure.

So today is day 4 after my op.  Now that my mind has overcome the depressive cloud of the general anaesthetic, I have been left with a small wound and a few stitches just in front of my armpit.  Its a bit tight and slightly sore, nothing major.  Sometimes my left arm feels a little numb, but I was expecting this.    My left breast is stitched and bruised, slightly blue (from the dye used during the operation) and is looking a little deflated, poor thing.  But really I feel I have had a lucky escape, and I WILL wear that little black dress (see picture) once more.  Sam The Man did a good job.