Wishing you all health and happiness for 2014

I am still very much wiped out after Docetaxel one, fainted in the co-op this morning which was humiliating!  Low blood pressure and probably low blood count to blame.  Also have ongoing pain in eye, ear, scull and cheek on one side - my GP thinks it's probably trigeminal neuralgia due to nerve inflammation from the chemo.  So, I am starting 2014 on yet another drug!!!  Fingers crossed it works as the pain is relentless and stopping me from sleeping.

The type of fatigue with chemo is like nothing else, you think you know what it's like to be tired, having two small children.  Long gone are they days of long lie ins and undisturbed sleep.  But chemo fatigue is something else.  I have lost all strength, pulling my shoes on  or opening a bottle is a struggle.  Hopefully I will pick up again towards the end of this week (I better do as I'm due to be working next week - yikes!).  I just have to plod through this, getting out and seeing people/talking to people definitely helps, providing distraction.

The end of 2013 has obviously been a challenge but it has not been a bad year and I certainly wouldn't want to write it off.  We have had some lovely family holidays and trips with friends, been to a beautiful wedding, welcomed friends new babies into the world....it's been full of life, love and  laughter.  It's too easy to focus on the negative things sometimes and forget all the wonderful things in your life, I am determined not to let that happen through this journey even though it is hard at times to see a point in time when I will be fully able to love my life again.  So I don't want to say goodbye and good riddance to 2013 as it has too many wonderful memories - the pinnacle of which has to be our lovely little boat - a dream for so long and through chance, good luck and timing it was all meant to be.  As a family we are planning ahead and looking forward to lots of trips on Black Pearl this summer.  We have lots to look forward to and I can't wait.  So, bring on 2014, you are going to test my strength for a bit longer but I hope that 2014 will be a year of health and happiness for all  friends, family and strangers who have given me strength throughout this journey and I know will continue to do so.

Happy New Year to you all
(BIG HUGS) 

PS. Happy Birthday to my little tantrum monster - Adrian had some notion that she was going to wake up this morning as a big 3 year old and the 'terrible two's' would be behind us!!!  Ha ha ha, how wrong he was :-)  Blog still justified in it's title of love tears and tantrums!!! :-)

Tired but no sickness.

Well, as promised Tax has so far not caused any sickness and only very mild nausea due to sensitive tummy.  You have no idea how pleased I am about that....the thought of ten plus days of severe nausea again was just way too much.  I still don't know what is to come in the next few days as far as bone and joint pain and any skin effects goes, but I feel much more able to deal with anything without the nausea.

I have a truck load of drugs to take again, the new one is omeprazole, this is to reduce acid in my stomach to prevent irritation due to the chemo and other drugs.  My digestive system has then a real bashing through all this.  Tax is meant to cause diarrhoea so I'll look forward to that in the next few days!  Will make a change from the constipation on FEC though!  It's such a strange roller coaster but only nine weeks to go now.

Surgery is provisionally booked for 14 th March, my last chemo if all stays on schedule is 7th Feb.  so end of Feb is party time to celebrate the end of hopefully the worst part and a little respite of feeling normal for a few weeks before surgery.  I can't wait :-)

I am very, very tired today despite a reasonable nights sleep.  Hope I have a bit more energy tomorrow.  But all in all I am feeling ok.

Xxx

Chemo 4... Here we go..

Well T-minus an hour and a half to Chemo 4.  Feeling apprehensive as its the first of the new drug Docetaxol but I don't feel as down about it as I did going in for the third FEC as I knew exactly what was to come.  There's no way of telling if this cycle will be better or worse but everyone keep your fingers crossed for me :-)

I'm feeling back to normal yesterday and today for the first time this whole cycle,  I have to take steroids from yesterday morning to prepare for the chemo today which can cause allergic responses.  The up side of the steroids is the seem to have dampened down the inflation in my sinuses which has been causing me ingoing pain and the have perked me up a bit so I've been able to get out for a walk and enjoy time with family.  The down side is it affects sleep but I didn't do too badly last night so feel ok today and ready to face chemical attack number four.

See you on the other side :-)

Happy Christmas All

Just in case I don't get a chance to update again before Christmas.....I hope you all have a good one.  We will be spending Christmas with my in laws who are staying in a holiday cottage near by.  The girls are very excited to spend Christmas with their cousins.  I am slowly (painfully slowly!) recovering from a cough and cold which has added to the mental torment of chemo three but I am feeling positive and trying to be optimistic about starting the new drug regime at the end of the week.

Had pre-chemo appointment today, earlier than normal due to Christmas.  The Docetaxel doesn't usually have sickness and nausea associated with it so I'm happy about that.  I just have to wait and see what the other side effects might be for me but....a change is as good as a holiday, ha ha!

My eye brows and lashes are starting to thin now, perhaps I should ask Santa for some fake ones!

Merry Christmas all :-)

What is chemo really like?.....

This is a question I keep getting asked and what people want to know is the practicalities of what it is.  It is a mysterious thing to most people (as it was to me a couple of months ago).  The thing is there are literally hundreds of different chemotherapy regimes.  Some are tablet form, some, like mine are intravenous, some are given daily, some weekly, some fortnightly, three weekly etc.  I don't even know all the possible combinations and routines.  Each type of cancer has drugs that have been designed specifically for it.  Most people being treated for a primary Breast cancer will be on a very similar regime and set of drugs to me.  Although, even within Breast Cancers it varies slightly and there are a whole different sent of drugs to treat secondary Breast Cancers (when it has spread outside of the breast to other parts of the body).  

As you know I am currently on a combination of three drugs which are given intravenously over the space of about an hour and a half.  These are at quite high doses and so three weeks is the minimum amount of time they can leave between the dose due to the effects of the drugs on non cancer cells, primarily the blood.  Some people have lower doses but more frequently.  Then next drug I am going to have for the next three cycles - Docetaxol is often given at smaller doses weekly, but as far as I know I am sticking to the three week routine.  I think the variation depends partly on protocols at the particular hospital.  The advantage of the weekly regime is that the side effects will be less due to lower dose but the disadvantage is you have to go in every week. 

The actual getting of the 'stuff' is not a big deal.  For me they put a cannula in my arm, connect a saline drip and then slowly syringe in the ridiculous amounts of the pink stuff then the clear stuff, then they change the saline drip for a drip of the other clear stuff.  The whole thing takes about an hour and a half then I go home.  It is not painful and other than a burning feeling in my nose and sinuses I feel no immediate effect from the drugs.  But this is just the start...it's the weeks that follow when your body is desperately fighting to repair itself from the damage the poison has done, that's the tough part.  A 'cycle' of Chemotherapy is the time from one dose to the next, so for me three weeks.

Each type of chemotherapy drug has its own, lovely, unique side effects.  Some people have said to me - oh, I know such and such a person and 'they were fine on chemotherapy', or 'their hair didn't fall out', or 'they carried on just as normal', or 'it didn't affect them at all'.......well good for them......note for future - none of these statements are particularly helpful to someone on Chemotherapy! Not only do all drugs do different things and have different effect, each person reacts in their own unique way

The Truth?.....having chemotherapy is like having the life slowly sucked out of you.  Dramatic statement but unfortunately that's where I'm at right now.  Oh, don't worry, I am staying positive and still plodding on and I am very aware there is an end in sight.  But so many people ask me what it's like and what they mean is the practical aspects and what if feels like physically.  However, it is the emotional toll that is the real battle, a daily fight to keep living life and not curl up in a ball and shut down.  Life sucking poison, that's what Chemotherapy is.  Yet it is saving my life...killing the thing that is trying to kill me, how do you get your head around that?  

A dichotomous marvel of medicine.

I didn't actually intend to come on here and rant, sorry.  I am very tired at the moment and am once again writting this at stupid O'clock in the morning as another wonder of Chemotherapy is that I wake up at 3ish every night, no idea why, but I can rarely sleep after that! We have had a stupidly busy weekend with various activities, climaxing with Isla's Birthday Party on Sunday.  We are all feeling wiped out now!  It was a great party though and Isla had lots of fun even though she has a horrible cold and isn't sleeping well.  Here are some pictures.  Without my beautiful little people in my life it would be far, far too easy to just shut down and self destruct.  As exhausting as they are, thank goodness for their needy little voices that rise above all else.

 

Hooray for the shrinking tumour!

Can't write much as I'm in a pit of pain, nausea and exhaustion, but just wanted to let everyone know the good result from my ultrasound today......lots of shrinkage.  To be exact the radiologist measured 39mm originally and at a maximum today could only measure 28mm.  This is very good apparently.  He also double checked my lymph nodes on that side for me and still all clear.

So, everyone wants to say it, I know....it's all worth it.......well, yes, of course it is, but wait a few days until I feel a bit better and then I might be more inclined to jump up and down and celebrate.  For now, I'm off to bed.

Over and out
X

Yawn....

So, I know you must be getting bored of my posts about the joyous side effects of chemo, but unfortunately I don't have a lot else to share with you right now!  The post chemo week really, really sucks....I know that you are all aware of that but I just wanted to emphasise it, not looking for sympathy, just explaining why I have little of any meaningful interest to entertain you with right now!

I am now experienced in three cycles of FEC so feel I can relate my common experiences and I hope that anyone going through the same may find some support knowing they are not alone with their weird and wonderful side effects.  Hopefully some of my suggestions to keep the side effects at bay may help too.

So, this is my typical pattern:

Feel great for about four hours after chemo finished then nausea hits like a brick wall.  In cycle one and two this was followed quickly by severe vomiting for several hours.  This time I escaped this, I think taking a sedative and going to sleep before the nausea hit may have had some effect.  I also had accupuncture the day before, keeping an open mind about that still.  I also had the strong anti sickness, Emend a few hours before chemo, the last time they didn't give it to me long enough before, it should be taken an absolute miminum of one hour before.

Day 2 and 3 are pretty much exhaustion and intense nausea.  Eating little and often helps.  The anti sickness ondansetron causes constipation so you need to counter that with something, I ate lots of prunes first time round but since then I have powdered stuff...movicol I think it's called.  I take steroids as anti sickness for the first few days too...these along with the chemo itself cause sleep disruption so I only take them morning and afternoon.  They make you hungry and give you a 'moon' face as my Mum calls it!

By day 4 the mucotitis sets in......softening and peeling of the mucous membranes from mouth to anus!  So far my mouth has been much better this time thanks to constant use of difflam mouth wash. I have also been very lucky up until now not to have any bad mouth ulcers.  This cycle my oncologist recommended using the difflam even before symptoms start and I think this has helped keep it to a minimum so far.

Day 5 was yesterday, I started to get the eye and ear pain that ended me in A and E last time.  At least I know this time it's not a heart thing, just another stupid side effect.  Still my left eye and it kept me awake despite ibuprofen and paracetamol.  It may just be down to dry eyes which is another common side effect, I have viscotears which is a very thick eye drop, it does seem to ease the discomfort termporarily.  My oncologist has referred me for an eye clinic appointment to check for blocked ducts.  If you can't tell by now, I had a very thorough oncologist this time around and she liked
prescribing things for every ailment!  Yesterday I had to start my self injections to stimulate my bone
marrow since my blood count seems to fall to borderline each time.  The injection is not painful to do but it does cause bone pain as a result of the bone marrow being kicked up the butt.  I think I've been lucky so far not to experience it too badly (probably shouldn't speak too soon though!)

So today im off most of the medication, which is always a relief, but there can be side effects from withdrawal, particularly from the steroids.  I continue to take something called domperidone which I take before meals to help my incredibly slow digestion and prevent heart burn. The nausea still remains and I imagine will until at least Monday if it follows the same pattern as before.  Annoyingly the only thing that takes it away completely is eating, but if I eat too much it gets worse!  Distraction helps too, and sleeping!

So, now that I have off loaded I feel I can move on with my day, time to get dressed, do something very minor that feels like an accoumplishment (like wrap a Christmas present!) then have another rest!  That's how my day goes......roll on next week for a tiny wee bit more energy!

Almost half way is actually the toughest place

Hi all, I am out of bed today, hooray!

Many people have been spurring me on reminding me I'm half way there.  Well, unfortunately not yet, another two weeks and I'll be half way there as this is only the start of this cycle.  Also, it appears this is actually probably the most difficult stage so far.  I am so exhausted, I know what is to come with all the side effects now and that's a bit depressing.  But this is also my last cycle on this combo of drugs.  This is both a good and bad thing.  Good, because the next drug does not have as severe sickness and nausea associated with it and I find the nausea the hardest thing to deal with.  Bad, because it brings with it another unknown and a range of different side effects that I am or may not experience.  The next drug is just a single one called docetaxol, again, it's a pretty strong chemo drug.

Going in for chemo this time was hard, I feel like my 'good' week of feeling well was actually taken up with the anxiety of the looming Friday and knowing what was to come. 

I have a few appointments looming in the next few weeks - a routine ultrasound this week to check the size of the tumour and ensure it is stabilised and not growing - if it has grown at all they would probably do surgery immediately rather than complete chemo, but this is not likely.  Best case scenario it is shrinking but from reading of others experiences with my type of aggressive, hormone positive cancer, it is the second drug that I am about to go on to, docetaxol, that attacks the tumour more.  Every case is individual though so it's a wait and see.  I just have to hope that the chemo has been effective at attacking any cells that may have escaped and be lurking elsewhere.

Next week is the meeting with Mr Surgeon where hopefully I will get a clearer idea of what my options are and what might happen, when.

I am looking forward to Christmas as I am very lucky that it will be on my good week when I should, fingers crossed, be feeling back to normal.  I also have all my lovely family in-law here to spoil me :-)

Thanks as always for all your love and support. xxx

Jen's Chemo went ahead as planned after another blood test and 2 hours of waiting. She's returned home with another huge bag of medication, to treat every side effect you can imagine.

As well as being really poorly, Emotionally she's pretty low at the moment.

So what ever you do don't ask her how she is.

You will have your head bitten off...........one of the side effects.

By

ANONE.

P.S.  Many thanks to our friends who have taken the girls for the night, as it's not nice for them to see mummy so poorly.

Chemo three is looming

Had a lovely morning (despite my annoying cold) - had a special Chrstmas lass with my lovely Lymington Tiny Talkers.  I have four more Christmas classes to go this week.

Despite trying to stay positive and enjoy this week of feeling well (other than said cold), I can't help feeling a sense of impending doom with Friday, and chemo 3, rapidly creeping upon me.  Now I know what's ahead it's actually worse than not knowing.  I can tell myself it may be easier, they won't ess up the medication this time and it might make a difference.  But, I know deep down what is to come.  It's only ten days of feeling rubbish, but it seems like a whole lot longer at the time.  I am REALLY not good at being incapacitated....watching 'This morning' five days in a row actually depressed my so I'm sticking to DVDs this time.  I can't read for the first few days, unfortunately, as the drugs mess with you brain and eyes and just about everything!

Anyway, must try to put next week to the back of my thoughts and enjoy this week.  The Christmas tree as gone up.  Isla was super excited and it was very cute. 

Here is our massively over decorated tree!

And some Christmas love:

......and then some very special tanturms, it all just became too much for 7pm on a week night! 

Lovely but unrestful weekend!!

Put your life on hold for chemo?  .........no, thank you very much!!

What a wonderful weekend, not at all restful as planned but we had lots of fun.  We woke on Saturday to the most spectacular day, blue skies and sunshine, it was just too perfect not to take the boat out.  We planned to just motor around but once we got out of the harbour it was just perfect sailing conditions - really calm sea and wonderful gently, constant breeze.  We got all three sails on black pearl up for the very first time and she sailed beautifully.

Here is a little snap shot of our trip.....

Home now and nursing a horrible cold that has been creeping up on me for the last week.  I just hope I can shake it off quickly so it doesn't delay chemo this week (weird to say as, of course, I would love NOT to have chemo, but in the long run best not to delay it).

I also arrived home to another mystery parcel....thank you again whoever is sending them, it's so lovely.

Off now to prepare for my Tiny Talk Christmas classes this week  :-)