Roller-coaster week

Its turning out to be a tough old week.  This Docetaxel is nasty stuff.  I felt fine on Monday and did my two Tiny talk classes with help from my Mum playing the role of driver and Sherpa!  Then on Tuesday I felt rubbish again.  I struggled through my class with a very croaky voice, then had to go to Poole hospital for my MRI scan.

The hospital car park was full so we had to park elsewhere and suffer a torturous walk from where we parked to the hospital (in reality it was just up a small hill but I swear it felt like climbing Mount Everest!).  I was seen on time which was a surprise, however things went downhill from there.  My heart sank when I was shown into a brightly lit room with a large chair, tourniquets, viles of saline and little yellow sharps pins........noooooooo, what do they need to inject into me......I wasn't expecting that for an MRI but apparenty they use contrast material as with CTScans.  For the CT they put a cannula in and at a certain point while you are in the machine you get iodine injected which provides contrast on the images.  So, here we go again.....I have always been fine with needles and injections, I'm certainly not needle phobic, but I may very well become needle phobic by the end of this journey.  As I was shown into this room tears sprang to my eyes involuntarily, I told the nurse I had sore eyes!  I just knew what was to come, my veins have given up, you can get the needle in ok but they won't allow anything in or out, they collapse around the needle apparently!  It's been a long time since I've had a cannula in first time and the only people who can get blood out of me first time are the pathology nurses who do it all day long!  Luckily the radiology nurse asked about my veins and went to get the best person at doing cannulas to try first time but after three go's she gave up and went to get the senior consultant. She was a lovely lady but despite her best efforts could not get my veins to cooperate.  She assured me they could just do some extra scans to see what they need to without the contrast.  So after all that I then had an extra fifteen minutes in the scanner just to enhance my headache!


This morning I woke up still feeling rough, and now even more swollen in the face!

I almost got to the end of chemo before actually LOOKING like a Cancer patient, but I have well and truly succumbed!

I will leave you with this picture of Isla and I, chilling out in bed this afternoon, I was trying to get a picture of us both and just had to laugh at the state of us, me with my swollen eyes and Isla with her finger up her nose!  Attractive pair :-)

Up and down

I had a lovely day yesterday, I felt great, got out the house and caught up with some fabulous friends. But last night I woke up feeling lousy and have been in bed dizzy and in pain again all day :-(  The one thing I haven't suffered with so far is painful mouth ulcers......well, yes, you guessed it, that's what I have today!!  I'm mouth washing and using all the treatments I have to make it better as I have to sing and talk and prance about at Tiny Talk tomorrow.....yikes!

One thing I'm trying is coconut oil.  My close friends and family already know I'm a bit of a coconut oil fan and I use it for many things.  I had never heard of it to heal sore mouths though but found this link on a cancer support group page.  I think I'll be trying out many of the homemade cream recipes from here, although it is really good just used as it is on your skin.  If you're interested check it out..

http://wellnessmama.com/5734/101-uses-for-coconut-oil/

A long day and a poem

Its been a more trying day today.  The bone marrow stimulating injections definitely make lots of things worse, nerve pain, bone pain, tiredness.  I spent the morning in bed and wrote a poem which was rather fun and therapeutic.  I have debated whether or not to share it but as the essence of this blog is sharing the good, the bad and the ugly I decided I should.  I am not a writer or poet by any stretch of imagination, as you can see, but this summed up my feelings for me today :-)

ONE DAY AT A TIME

One day at a time,
That's how I got through,
The journey of Chemo,
The poisonous stew.

One day at a time,
Friends and family by my side,
Rooting me on,
Not letting me hide.

One day at a time,
Losing my hair,
Learning what matters,
and just not to care.

One day at a time,
Feeling so sick,
That I just couldn't think,
or get a grip!

One day at a time,
Slowly coming to terms,
the reality of Cancer,
and all that it means.

One day at a time,
I couldn't refrain
From gobbling down medicine,
To deal with the pain.

One day at a time,
Skin peeling off,
From inside my body,
Feeling so rough.

One day at a time,
Going for a walk,
To keep myself moving,
Even just round the block.

One day at a time,
Injecting myself every night,
To ward off infection,
And keep up the fight

One day at a time,
Still living my life,
Doing my job,
Being Mother and Wife

One day at a time,
It's not all been bad,
I've kept myself going,
Adventures I've had

One day at a time,
The people in my life,
Have lifted me up,
Above all the strife

One day at a time,
I've accepted the help,
Of beautiful people,
who's kindness I've felt

One day at a time,
More love I have found,
From strangers and family
And friends all around.

One day at a time,
My children have taught,
That what's most important
Can never be bought.

One day at a time,
Is a good mantra to keep,
It's taught me a lot,
It helps me to sleep.

One day at a time,
My journey goes on,
I now live my life,
To this simple song.....
                                       one
                                       .......day
                                              ......at
                                                    ...a
                                                       ....time.

Talking to the children

Some serious discussions with Abi this evening.  So far I have been drip feeding information, both girls know I am 'poorly' and having 'strong medicine' to make me better and that is what has made me lose my hair.  Incidentally, both of them are totally fine and accepting that I have no hair and Isla is finding my 'spiky' bits amusing now it's growing a bit!  Tonight's conversation came about because one of the girls in Abi's swimming class on Tuesday had asked her what had happened to her Mummy and Abi didn't know what to say.  I realised it was because I had taken my hat off at the pool as I was overheating, it will have been the first time the little girl had seen that I was bald so she was obviously taken aback.  I don't think Abi can have realised what she meant as Abi is so used to me being bald now.  So, we had a chat about how she can explain to people that medicine to make me better made my hair fall out but it will grow back.  At the same time I decided to drip feed in some more info, we've tentatively talked about surgery which made her very upset so I've not brought it up again but she mentioned it so I went with it.  She asked what they would do......difficult question as I don't know myself yet!  I explained how I would be asleep so it wouldn't hurt and that they would either cut a part of my boob or all of it away and there would be a scar.......'oooooh, like Natalie's chin but bigger' was her response (a friend of hers who fell and needed stitches in her chin!).  I think it's good for her to be prepared for what it might look like (she'll probably deal better with it than me!) Abi is quite gleeful at the prospect if a 'fake' boobie, much more so than me!  I decided to briefly mention radiotherapy and also the possibility of further surgery in the future to build me a new boob.....she was quite amused by this when I said it could come from my stomach.....all sorts of ideas about where my belly button might end up!!!  All in all she seems ok with it all and I have definitely found that talking about it little bits at a time has been the best way, each time building in a little more detail.

Being able to share experiences of dealing with young children through this is one of the reasons groups like the Younger Women's Breast Cancer network, a facebook group, and Shine Cancer Support are so invaluable.  You don't come into contact with many younger people during treatment as it really is predominantly people in their 60's plus in oncology.  I talked in my last post about the Shine event I'm attending next weekend, I'm really looking forward to it, just sharing experiences with others at a different point in their journey is so valuable.

So, I'm almost a week past chemo #5 and I'm still doing much better than last time.   The bone marrow injections are a pain in more ways than one, they cause pain but I think they also make me more tired.  Unfortunately I have to take them for 7 days not just 5 on the Docetaxel as it is more potent on the blood cells, although I did cheat and miss the last to last cycles I just felt so awful.  I'm reluctant to risk it this time though as I don't want any delay to final chemo so to pick up an infection at this stage would be awful.  I still seem to be immune to sleeping tablets, even when upping the
dose, plus twice now I have had a weird reaction after taking them....excruciating, ripping pain in my sternum and ribs for about an hour!  I'm going to try spacing my evening meds out a bit and see if that helps, rather than taking them immediately before bed.  It's all a case of trial and error and you just don't know what knock on effect everything has.

I think I am getting much better at knowing when I need to rest and when I have the energy for a walk.  One of the things I have gained on this journey, listening to my body and what it needs and learning to do 'nothing', although I still don't like it!

Tentatively doing ok

Not sleeping and nerve pain worsening but I'm doing much better than last time so far.  Got to get bloods done today and go to GP for more amytriptaline.  Toes and fingers becoming sensitive again but I'm doing all I can to look after them, lots of cream, nail polish on fingers to keep them strong and protect from UV light.  Have had lots of comments about my 'glamorous' nails, it must seem odd to everyone as I don't generally wear nail polish but it is on doctors orders if I want to avoid my fingernails  falling off like my poor toes!

Talking of poorly toes....me and my poorly toes and battered body will be doing a 5k walk (I just don't think running is possible but I might try) around heingstbury head on Feb 2nd as a challenge at the end of a 'great escape' weekend I am attending in bournemouth organised by Shine Cancer Support.  They are a charity that provide information, support groups and the chance to meet informally with other young adults in their 20's 30's ad 40's with a cancer diagnosis.  The funding from the walk will go towards providing the same opportunities for others at next years 'great escape' event.  

Here is my fundraising page if you would like to sponsor me and my poorly toes ;-)

http://www.charitychoice.co.uk/fundraiser/jenniferhart/the-shine-great-escape-challenge

Chemo 5 done

Other than a very bruised hand from lots of stabs trying to get a vein to accept the cannula, chemo 5 was uneventful and straightforward.  Came home with my very own pharmacy!  A friend has kindly lent me a pill box which will help greatly...here is my weekly regime. .........

On top of this I have water tablets as and when for fluid retention, pain killers and liquid oramorph as and when, antibiotic cream for my poorly toes, viscotears for my poorly eyes and laxatives and cream for my poorly bot bot!!!  Quite unbelievable isn't it?  For someone who hates taking any medication and tries to live a healthy life, it's a struggle to accept I have to take all of this to counteract the poisonous effects of chemo.  It is also unbelievable to me that some people have very few side effects and don't need all this...it is so variable.

I'm feeling good this morning, still in bed though as didn't sleep much due to the steroids and also trying to keep my feet up to reduce the swelling in my ankles.  I'm feeling positive, it is such a good feeling to only have one more chemo ahead now, yes I have to get through the side effects from this one which may be tough but to know I only have to do it all one more time is just great :-)

Pre Chemo #5

Pre Chemo appointment today.....had the 'happy prescriber' Spanish Oncologist again and she was lovely and helpful again.  Went through all side effects and came up with a treatment plan or drug for each one!

I started with my feet, my big toes are in a bad way....have had lads of bleeding under the nail and its been very painful to walk for the last week.  It doesnt help that the girls keep standing on them!  My Left big toe was stood on by Abi as she left for school, then right big toe stood on by Isla as I did her hair....this made it start to bleed from the end of my toe nail.   Both nails have come away from the nail bed and the Oncologist is pretty sure I'll loose them both :-(. They should grow back though.  Have antibiotic cream for them.   Then on to my swollen legs, got water tablets and a change to steroid plan to help with that.  Pain management, got co-codamol and oramorph just in case.  Sleeping....since lorazepam has no effect on me and nor does the amytriptaline which should  make me drowsy we're now trying zolpidne.  Then there is the usual difflam mouth wash, nystatin and daktarin gel for mouth infections and ulcers, steroids and antihistamines for allergic responses and the    Ondansetron for sickness.  Oh, and must not forget about the evil bone marrow stimulating injections!  She warned me I'd have two bags to take home tomorrow!  Not sure I have space in the house for it all, going to have to clear out a cupboard just for my medication!

Just had a call from the chemo ward as I was writing this, bloods are borderline but going ahead tomorrow so that's good. I was slightly worried my red blood count might be too low, as it turns out it was the neutrophil (white cells) that were low.

I wanted to show you my amazing eyebrows....for anyone going through chemo or with no eyebrows for any other reason, I highly recommend Browzings from Benefit.  It is a wax and a powder, you put the wax on first then the powder over the top and it looks really natural, much better than pencilled on eyebrows. I thought initially that I would just go bare and not bother about it but its amazing how weird you look with no eyebrows, and how ill.  I did a before and after pic for you this morning.  This  is with no other make up on, just the eyebrows and you can see the difference it makes......


                                                                     Before.....

After.............

Feeling good ish

After two days of Tiny Talk classes I feel tired, of course, but great!  It has definitely been the right decision to continue this term.  As one of my lovely Tiny Talk Mums said today, it's such a positive, upbeat environment that you can't not be happy.  What's not to love about being surrounded by cute babies and toddlers?  It keeps me feeling like I'm still living my life not having it on hold.

I'm not dwelling on Friday as much as I did the last two cycles, in fact I keep forgetting its this week...must remember to go to my pre-chemo on Thursday!

I had an interesting experience at the eye clinic yesterday.  I had been referred due to the pain on my left side,primarily behind my eye and also for my watery eyes which was probably due to blocked tear ducts. Obviously since the referral the pain as been put down to inflammation of the trigeminal nerve but I wanted to just have my eyes checked anyway.  The good news is all looked healthy inside my eye.  I then had needles poked into my tear ducts to try to flush them out.   Yes, it was as yucky as it sounds, not painful as I had anaesthetic drops put in first, but just not a great experience!  Unfortunately the conclusion was that my ducts are too small......could be naturally that way or dried up and shrunken due to chemo.  But it was not possible to flush them out.  I could go back and have them enlarged under local anaesthetic, but you won't be surprised to hear I decided against this!  I could do without yet another afternoon in hospital and have enough needles poking into me without some in my eyes!!  I'll just put up with slightly sore and sometimes watery eyes for now!

Job for tomorrow is to do my tax return - always the procrastinator, I could have done it six months ago but I always do it at the end of January when it is due.  I have to be slightly more organised than normal since I may not feel well enough the next two weeks to do it!

Ooooooooouch

The worst pain ever is stubbing your already black toenail.


Aaaaaaaaaaaaaaaaahhhhhhhhhh.

That is all.

A mixed week

Well week two on Docetaxel has been better than week one (not hard!) but not great.  Still feeling exhausted doing the smallest thing, like walking to School and back.  No fainting though, and facial nerve pain is definitely under control.  New exciting side effects are purple big toenails that feel like they have been crushed by a horse, swelling up like a balloon and major weight gain (8lb in a week and a half!). Face swelling started last weekend and that along with bleeding under the skin on my neck resulted in a hospital visit on Wed to be assessed.  The main mystery is not the swelling, that's a common chemo side effect, but the swelling was more obvious on my left side and the bleeding was on my left side, the same side as my eye/ ear/ face pain.  So I've been  referred for an MRI just to check nothing major going on, but an 'urgent' MRI on the NHS could be weeks!   I'm pretty convinced its all just nasty chemo effects though.

I was just well enough by Friday to return to Tiny Talk - my wonderful Bransgore Toddler class, all Mums and babies I've known for a while so it was lovely, but still exhausting!  Not sure how I'm going to do four classes on Monday and Tuesday, might need to spend Wednesday in bed!  It will be worth it though to get back to routine and normality briefly before my next hit on Friday.

I may still be feeling the effects of chemo but I felt well enough to travel to Plymouth yesterday so we could spend the weekend on the boat.  The children are very excited to be here (with their new sleeping bags from Father Christmas.....love it that they are young enough to think this is a great present!) and it's a beautiful sunny day today, we went out for lunch (Abi had mussels, she's a sophisticated sailor!) and then pootled about in the harbour for a while.  Adrian is currently cooking our dinner on the boat....pasta, sweetcorn, tomato pasta sauce with smoked sausage pieces....not as sophisticated as lunch!!

A tough week

Hello everyone, sorry for the radio silence, I do try to post as regularly as I can as I know so many of you are keen to know how I'm doing.  If I am not posting regularly you can assume it is because things are really good, or particularly bad.  Obviously it has been the latter this time!

I honestly thought I could cope much better with pain than with the nausea, but it turns out pain in your face is a particularly unpleasant type of pain!!!!  I have had a problem with pain in my left ear and eye since chemo #2 when I had that lovely afternoon in A and E being looked over and it was concluded it was just a chemo side effect.  I then had a bad cold and cough during chemo cycle #3 which persisted over Christmas so I put sinus pain down to the cold.  Unfortunately, since having  Docetaxel #1, the pain increased and by the middle of last week was quite extreme.  I had 3 nights of no sleep at all due to the pain.  Add to this the absolute sheer exhaustion and muscle ache from the Docetaxel itself and you can imagine, I was in a bad way!  Docetaxel is known to cause inflamation of the peripheral nerves - neuropathy, which causes numbness and pain in the hands and feet.  But, it is not typical to experience this in the facial nerves.  My GP thinks its the trigeminal nerve that has been effected, this is a nerve which runs through the ear, eye and along the jaw which is exactly where the pain is.    She prescribed me a drug to treat trigeminal neuralgia but unfortunately it does not work instantly because it needs to build up in your system.

It's a week on now and the pain is finally under control, it's hard to know why.   It could be the amytriptaline for the neuralgia is finally working or it could just be the chemo effects wearing off so it's improved, who knows.  I will probably stay on the amytriptaline until the end of chemo just in case.  As well as the pain, I've just felt horrendous generally, not able to do anything or even move around much without needing to sit down.   But.....I have turned a corner today I think :-). I went for a walk yesterday and it was hard.  Today it will be easier, and tomorrow easier still, I'm sure.

Never take for granted what your body does for you, it is truly amazing.  I am so impressed with how
my poor body keeps bouncing back....it's suffering but it's fighting.  The latest joy (other than my ever disappearing eyebrows) is the nail bed pain.....my big toes basically feel like I have stubbed them on the corner of a chair repeatedly!  This is a common effect of Docetaxel.... Nails often discolour and come away from the nail bed, and even fall off......yuk, not looking forward to that!

While feeling horrible and sorry for myself yesterday, I received another annonymous parcel full of beautiful things.  Here I am with my puffy eyes, patch eyebrows, baldy head, but with a beautiful, soft, snugly scarf which I haven't taken off since.  Whoever you are, thank you for putting as smile on my face yesterday with your generous, thoughtful and just very kind gifts.

During this horrible past week, my two babies had their birthdays!  Isla turned 3 and Abi turned 6 ...... Here they are...

1st Jan 2014..... Not a great start :-(

I haven't been able to get up and dressed today and unfortunately I can't say it's due to repercussions of a great night out!  Not having the best start to the year.  I have no energy or strength, difficulty eating and dizzy and feint if I stand up.  Adrian's meant to be back at work tomorrow but that is looking unlikely.  I just want to be well enough for Abi's birthday celebrations at the weekend....I will hope things improve tomorrow.

The girls are enjoying time at home together, playing with new toys and watching new DVDs.  Poor Adrian has been kept busy too, all new experiences for him such as friendship bracelet making!  There has been lots of Lego building too though, so not all bad or him :-)