Feeling tired...again!

Feeling tired, but what can you expect after two general anaesthetics in two weeks?  I've been having sudden moments of 'has this really happened' over the last few weeks.  I think since I feel more and more my normal self, recovering from chemotherapy, I sometimes forget the train I am on.......can I actually just get off now?!

I'll get back to my walking regime tomorrow, couldn't manage it today.  But I will get back on track.  I still have muscle aches from the chemo but its getting better every day despite the double surgery setback.

My hair is growing well (though my eyelashes could use some encouragement)....here it is, six weeks post last chemo, though it started growing at about Docetaxel 2.  Yes, it is as fuzzy and fluffy as it looks :-)

Home after a very long day

Had a big old wait today before surgery.  Back home now, feeling scatty brained (although I felt like this before surgery!) and still dizzy and very, very hungry as its been 24hours now since I ate.  Feeling fine otherwise and full of lots of lovely painkillers so I'm very comfortable.

X

Results

So, good news and bad really....as these things always go!  First of all the best news is that the lymph node was clear with no signs of cancer.  This is really the most important bit. If there had been signs of cancer then I would have had to have the rest of the lymph nodes removed which has long term implications.  Additionally, the fact that cancer has not made a home in my lymph nodes means the chances of it having made a home elsewhere in my body is less.

Ok, so the bad news, and it's not terrible, is that I need to have more surgery on the breast.  On the scans it looked like chemo had shrunk the tumour from almost 4cm to about 1cm.  However the pathology shows cancer cells still remaining across the whole original tumour mass.  Basically the chemo has punched holes in the tumour and destroyed most of it but left cells remaining.  The surgery that was planned was to remove the affected area but what they expected to see was a small tumour at the centre surrounded by scar tissue.  Instead there was tumour surrounded by scar tissue interspersed will cancer.  So, they have to go back in and remove a little bit more.  Like scooping out a melon!  If they still don't get clear tissue without cancer then I'll be back in for full mastectomy.

So, I'm back in for surgery tomorrow!  Bit of a shock and not what I had planned for my Friday, but its better than waiting for a week or two as it just sets everything else back even further.  Luckily they had space for me tomorrow.

Eye update....I have none!  A detailed orbital  MRI has been ordered, urgently apparently so should be within the next few weeks but nobody can tell me when!  I'm beyond frustrated about it and will get back on the case again on Monday!

Thank you to all my friends and family for all your kind wishes and thoughts.  I know there are so
many people thinking of me and waiting to hear what the news is.  I'm sorry I can't speak to everyone personally but I'm bored of telling this story already!  I'm so pleased I can write this blog to let
you all know without telling it or writing it over and over!  I honestly feel absolutely fine about it all, obviously I would have preferred not to have further surgery but, it is what it is.  I recovered really well first time so can do it again and I know what to expect this time.

So there we go, déjà vu ..... surgery tomorrow.....see you on the other side.

:-)

Keeping busy

I'm trying to keep busy this week to make results day on Thursday come around sooner!  Have so far had lovely walks/ meet ups for tea/ lunch dates with friends and have a meet up with my Shine Cancer support group tomorrow.  It's so nice to feel well and enjoy spending time with people, having a genuine smile on my face, as opposed to putting on the best smile I can but feeling like any minute I'm about to collapse in a heap!

I'm trying my hardest to eat well but since chocolate now tastes amazing again (it tasted awful on chemo!) I'm finding it hard!  I have four months of chocolate eating to catch up on!  Also salt and vinegar crisps, I just couldn't taste at all.  I had a craving for them one day but could taste nothing....I kept eating them and my tounge tingled due to the strong vinegar, but no taste whatsoever, it was a strange experience.  All dairy products tasted strange too.  I got so used to all of this that I almost imagined it would be like that forever, I'm so glad normal taste bud functioning returned so quickly.  The hideous process my poor mouth went through each cycle....once again the healing properties of the body astound me.  I am amazed my mouth is all so normal again so quickly.

Right, I'm off to find something delicious to salivate over :-)

Still happy :-)

Still progressing well, healing well, feeling well and mostly just loving the fact I have my taste back.  Have a manageable amount of pain under my arm which restricts me stretching too much and is just generally uncomfortable due to the position but I've been able to keep up walking every day.  I've felt tired this weekend but nothing compared to a few months ago.

Unfortunately oedema has returned to impede and irritate me!  Back on the tablets and back on with the lovely compression stockings!  I know it's not a big deal in the grand scheme of things but it does get me down because, at its worst, my legs are painful and moving is uncomfortable.

Small progress on the eye front.....my oncology team phoned to say that the Wessex Neuro centre has requested another MRI and an Opthalmology assessment (no, shit Sherlock, we knew we needed that at least six weeks ago!). So, hopefully sooner rather than later, I'll get those appointments through.  I still have eye pain, on and off pretty much every day so it's definitely not getting any better but not getting much worse either so that's a good sign.

I have really enjoyed walking every day but needed to rest a bit more this weekend. I will continue this week to try to gradually build up my stamina and muscles.  I have to accept its going to take a lot longer than I would like.

4 days post surgery

Well I am feeling great; far, far better than I imagined.  I think this is due partly to a propensity to heal well, partly due to sheer determination to not be 'ill' anymore and mostly due to the fact this is the longest number of days away from a dose of chemo since October!  It's now four and a half weeks since my last Docetaxel and a few weeks ago I really never imagined feeling 'normal' (whatever that is!) again.  Not that I'm quite there yet, but it is within my grasp and I just cannot explain in words how amazing that feels.

I am aiming to walk one or two miles every day as fast as I can.  Today I took out my mp3 player with me and listened to my usual running music while walking.  It felt amazing and made me so happy, I would have started running had it not been for the disturbing glugging noise my breast was making (more on that in a minute).  Also, my burning legs remind me I'm a while away from being able to run, but I can see it in the not too distant future.  So long as no further surgery is needed I probably have about eight weeks before radiotherapy so, lots of time to build up my strength and stamina (once I get the surgical all clear of course).

Once again I am left marvelling at the body's ability to regenerate and recover.  I have about a four inch incision down my breast and a three inch incision in my armpit.  The actual breast surgery is less complex and less painful than the surgery to remove the lymph glands.  They don't sew together the tissue left where the tumour and breast tissue was removed from, they just sew the skin.  So that glugging I referred to is the cavity left behind that has filled with fluid......sorry I should have written a warning first for any squeamish bods out there ;-). Apparently the fluid will eventually solidify and the body will sort it all out itself...amazing!

The main pain currently is the armpit incision, as you can imagine it is in such an awkward position.  I have physio exercises to do to keep my shoulder mobile.  There are longer term implications from removal of lymph glands too, I have to be careful of any cuts or insect bites on that arm as the lymphatic drainage is now impaired and I'm at risk of lymphoedema, basically swelling of the arm.  I shouldn't have this problem as only four or five glands were removed but if any of them turn out to have had traces of cancer in them I will need to have full clearance of the 20-40 glands and then I'd be at more risk of lymphoedema.  For just now I  just need to be careful lifting heavy things with that arm as this can trigger lymphoedema.

My hair is making great attempts at a comeback but unfortunately doesn't seem to want to grow at the front!  Due to the chemo my skin will be very sensitive to the sun for a long time so even with hair I'm going to have to continue with hats through the summer so I'm on the lookout for funky sun hats now.  I love an excuse for shopping :-)

Eyelashes are making an appearance on one side only!  Eyebrows only want to grow the big thick, awkward ones that you usually pluck out!  Other body hair that I could happily live without is growing like cress on a warm sunny window ledge.........typical!

Chemo's final lingering gift of oedema and disintegrating nails is ongoing but I think I'm winning the battle on both counts.  The oedema is miles better thanks to using pressure stockings on my lower legs and tablets.  I am using a protein nail thing for problem nails and it seems to have stopped the deterioration of most of my finger nails.  Unfortunately the night before surgery I caught the corner of my right thumb nail and it ripped half way from the bottom......eeeek, I know, cringeworthy, I cringe now just thinking about it.  I would post a picture but it really is grim.  I can't bear to tear it off completely so I have just been taping it together every day.

So that's a run down of my brilliant, brilliant body, and it really is brilliant, every imperfect little bit of it :-)

Home and feeling good

Surgery went well......well, as far as I know as the surgeons didn't come to see me afterwards.....apparently they were having an audit afternoon??!  It took three hours and it was a strange experience.

In the anaesthetic room they put a cannula in my hand and I thought the doctor said 'I'll give you something to relax you'. But he must have said he had given me something and put it in as soon as the cannula was in.  So while he was preparing the anaesthetic I started to feel like I was going to faint.  I therefore resisted it and tried to keep my eyes open, then realised he was putting in the anaesthetic and that was it - out.

I woke up in recovery and could hear the nurses around but couldn't open my eyes, that was weird.  I was very sleepy for about an hour and a half but after a stale tuna sandwich I felt more awake! We came home last night....they don't like to keep you in.   I was still very dizzy so they gave Adrian a wheel chair to get me to the car.  Personally I think it's a bit nuts that the surgeon or anaesthetist didn't see me in recovery and I went home not yet able to walk in a straight line!  However I slept much better last night being in my own bed than I would have in hospital.  Results are a week on Thursday, the 27th.

I have two long scars and a fluorescent blue chest/ underarm!  I'm not in very much pain at all, surprisingly, as long as I don't move.  The pain may increase as the scar forms and starts to pull, but I have a bottle of morphine so I'll be alright!  I also don't feel too groggy from the anaesthetic.  The lovely anaesthetist......named Dr Titley....I struggled to keep a straight face in light of the operation he was about to be involved in :-) .....warned me that even if I felt ok I would still be cognitively impaired for about 48hours.  So, I've not to cook or operate a kettle....again, struggling to keep a straight face!  Operating heavy machinery, driving, yes, I understand that, but come on, I think I can safely operate a kettle, but don't worry, I'll ask an adult to  do the dangerous bit and pour the water
into the cup :-)

Off I go

Pale, pasty and no make up so added a bright hat to cheer things up :-)

Be back soon.

xxx

Surgery

So, tomorrow's the big day, the next stage of this journey for me.  For the last five months I have been living as a person WITH Breast Cancer.  To be honest I can't say I particularly dwelled on this fact, the idea that I had cancer was just too surreal to actually accept sometimes.  By the end of tomorrow I might actually become someone that HAD breast cancer.  Obviously I need to wait for the pathology results to confirm this but it will just be great to have what's left of the little bugger removed.

Someone put the idea in my head that I could ask to see it....ha ha, if you know me well you'll know how much this appeals to me, I'd love to have a poke and a prod and look at it under a microscope!  Somehow I don't think they will let me do that!  I guess I will probably not be so interested when I'm all groggy, and most likely being sick knowing my history, post op.

I have no idea what time the op will be.  I have to be in at 7.15.  It's a bit like an airport.....they get everyone in first thing, then we all sit in a holding pattern in a room awaiting our slot for take off.  It could be a long day of sitting around.  I obviously can't eat or drink so if my slot is later in the day it could be a bit torturous!

I will have a post op check up on the 27th and I'll get all the pathology results then.

So, I'll see you on the other side .....still me, as always, but a little lighter.

Last day at work

Well I taught my last Tiny Talk class today, I'm now having a break until September to complete all treatment and then have some recovery time.  It will be the longest break I've had since starting when Abi was six months old, five and a half years ago.  I know I'll need it and its the right decision but it feels a bit strange just now.

I'm feeling fine about Friday, lots of people have been asking.  To be honest I'm still more concerned about my eye than anything else.  No news on that front but my GP is now on the case.   Also feeling very uncomfortable with oedema that is getting worse rather than better.  Finding out that it could take months to fully resolve does not cheer me up.  Irene - ankle twirls are the recommended exercise so I'm twirling at every opportunity :-)

The happy news is that my taste is almost back to normal, still a little funny with dairy products but most other things taste normal :-)  I'm still tired out by doing very little but for the most part have stuck to my exercise plan....pathetic though it is!  Obviously having an operation will get in the way of my grand plans and I will have to stick to ankle twirls and leg lifts for a while.

I have my pre op appointment tomorrow.  No idea what that actually involves, they seem to like to keep you guessing.  I am used to it now, the strange hospital system where they just mail you appointments but don't actually explain the process, or what the appointments are about.  I'm sure other hospitals must be better but mine is pretty rubbish.  However the staff are all great and I am eternally grateful to live in a country with free health care.  We are watching the first series of Breaking Bad.  For those that haven't seen it, the main character has lung cancer (I know, probably not the best choice of programme to watch at the current time!)  The episode we have just watched has the main character and his wife discussing whether to get into huge debt to pay for chemo and radiotherapy without a guarantee of cure or ......not to.  Wow, I feel very lucky that I can get the best treatment available and don't need to worry that it might bankrupt my family.  

Weekend away :-)

We are enjoying a sunny weekend near Brighton this weekend.

Having fun :-)

Surgery plan

So, surgery is booked for 14th March, I have to be in for 7.15am......that's crazy!  My tumour is now just over 1cm in size, so has shrunk considerably, and my surgeon wants to try for breast conserving surgery.  So the plan at the moment is to remove the tumour and a section of tissue surrounding it plus samples from either side of what's left.  This will then go to pathology to be assessed.  Beware, this is where this post is going to get technical, please skip the rest if you don't need to know!

It's amazing the new knowledge and vocabulary you pick up on a journey such as this.  So the first thing I need to enlighten you about is 'margins'.  Basically I need to have 'clear margins' from this surgery.  This means there is a sufficient area of 'normal' cells around the excised tumour and surrounding tissue.  If there is not a safe margin then further surgery will be needed.  It doesn't end there though....next I need to teach you about SNB.

So SNB is Sentinel node biopsy.  On the day of my original diagnosis (well the week before the diagnosis was confirmed) at the ultrasound they looked at my lymph nodes which run all the way from the breast right up into the arm pit.  Nothing suspicious could be seen - great :-). But they can't rule out spread to the lymph nodes without looking microscopically at the cells.  So I need to have a node removed and sent to pathology.  This is a separate operation, but will be done at the same time as the WLE (that's wide local excision....basically removal of tumour as surrounding tissue).  The sentinel node is the first node that the breast tissue drains into.  The way they find this node basically turns me into a blue smurf from what I have read!  They will inject me with radioactive blue dye, the dye then travels through the lymph nodes and they can use a radioactive sensor thingy to detect which node is most radioactive...this is the sentinel node......clever don't you think?  They then take this out and it goes to pathology for assessment.  If anything is found, again I will need further surgery, this time to remove the rest of the nodes.  Oh, I almost forgot to explain the fun bit.....the radioactive funky stuff turns your skin blue....my breast, under arm and part of inner upper arm will be blue.  Apparently it can last for up to 6 months!!!

As things stand I don't really know the time scale of things because it all depends on the pathology results from surgery.  At some point after surgery I will be haveing between 3 and 5 weeks of radiotherapy (again, the number of sessions will depend on path results).

I have had a bit of a turmoil accepting the surgical plan as I was quite set on the fact that I would have a full mastectomy to remove all breast tissue.  However the survival statistics are identical for mastectomy and WLE plus radiotherapy.  Also, unfortunately, even with no breast tissue you can still have recurrence in the muscle and skin.  Recurrence is the same cancer returning in surrounding tissue.  This can be treated, usually by surgery.  This is different from secondary (or stage 4) cancer which is the breast cancer spreading to other parts of the body.  Whatever type of surgery is done doesn't make a difference to the chance of developing secondaries, hence why the 'survival rate' statistics are the same.

The harsh reality is that if I'm going to get secondaries, the damage is already done, cancer cells could be lurking in parts of my body, ready to spring into action at some unknown time in the future.  Believe me, I am not being defeatist or negative, it is what it is.  Hopefully the nastiness of chemo has blasted all the blighters to kingdom come, but I do have to learn to live with shadow of worry.  My plan is to be too busy having a fun filled life that I don't have to time to worry :-)

So that's the technical details as I understand them at the moment.  I'm hoping to hear what the plan for my eye lump is on Friday when I go to Oncology for POST.....yes POST not PRE chemo ..........boy does that feel good writing that, might just have to do it one more time POST CHEMO!  I received a letter to say my scan had been sent to the 'Wessex Neuro Centre' at Southampton hospital.  It sounds very impressive, I just hope there is a Boffin there who has a vague clue what it might be and what to do about it!

I'm feeling very determined this week.  Mostly determined to be able to walk to school and back at a reasonable pace without feeling like I am going to collapse!  This is the first week in a very long time that I will have done the school run every day. I've only done two days so far but, as I said I'm determined so it will be completed and I hope to report by Friday that I am able to do it without puffing and panting like an old man.  Watch this space!

X

Ups and downs

I've been physically and emotionally up and down over the past week.  I am ecstatic to be finished chemo, literally every day I wake up and remember I am finished and feel so happy......silly really but it gives you a small idea how much I Totally HATED it.  But I am finding it hard to accept that the effects do not vanish immediately. I am still very much in my last cycle and still dealing with pains, falling off nails, peeling skin and most annoyingly oedema.  This will all gradually get better (except the nails which may get worse for a while) but I have to keep reminding myself that I'm no where near better, it's very frustrating.  Even walking to take Abi to school and back is exhausting and it's only round the corner!

With the end of chemo comes a move on to the next stage.  I have had a meeting with my surgeon and surgery will be going ahead on March 14th.  I will write more tomorrow with details as I am too tired just now.  I also have my eye 'lump' still hanging over me.  I got to see the MRI scan with the big white blob behind my left eye.  Apparently it's about 1cm.  Nobody can make a diagnosis of what it might be, the scan has now been sent to Southampton for some neurology dudes to look at it.  It's VERY unlikely to be a spread of breast cancer as its not a common place but it can't be completely ruled out at the moment.  It's frustrating having to wait, especially as its still causing pain despite the amytriptaline.

Sorry to be all doom and gloom, it's really not how I feel most of the time.  I'm really looking forward to feeling better and better each day and not having another poisoning looming over me.  I am excited to be able to so a bit more exercise but very aware of the need to the it slowly.  Most of all I am looking forward to spring, some warmer weather and all the plans I have for summer, I'm making a list, perhaps I'll post it.  I have two more weeks of Tiny Talk classes then I'm taking a break until September.....so I have a very long summer of free time to look forward to :-)