Saturday 22 July 2017

Weeks 33-34: Holidays and appointments galore!...

Weeks 33 -34: Thursday 06 - Wednesday 19th July 2017

So... the last two weeks have been manic!  In a good way 😄😄😄.

I really have tried to cram in as much as possible prior to surgery, as well as juggling all the medical appointments... as mum says, I am not one to let the grass grow under my feet! 😉

First off... an apology... to all my wonderful friends who have cooked for me or taken me out.... my appetite is still somewhat sporadic, but everything has been so lovely and thoughtful... I will have a lot of re-paying favours once fully recovered, fit and healthy... but also appreciate I am very lucky to have such good friends, family and neighbours 😊.

The first part of this fortnight was taken up by a long weekend trip to Portugal with my parents.  The daily travel blog is on Facebook under 'Trials and Tribulations of Mrs Mac', but the few edited highlights includes mum coming up with a genius new business idea for the follicle-challenged like myself...

Basically I could create a range of beach balls with sunglasses on, to keep people like me company in the pool to stop feeling self-conscious.  I came up with the name 'Bob the Baldie'.  I couldn't stop laughing - I amuse myself sometimes lol.

But on a serious note, I think this was really the first time I had so many people stare at me.  As it was so hot, I didn't even have a hat on, instead opting for fresh air and sitting under parasols.  And gosh there were a lot of stares.  I am not normally a self conscious person, but when even Dad picked up on it and commented on it, it was possibly the first time in 6 months I felt a bit more aware of maybe how much I have gone through... certainly in other people's eyes.  

(Side note - I got free ice cream for being 'so brave' though... and who turns their nose up at free ice cream??)

Anyway, avoided sun burn successfully with the factor 50, even whilst inebriated through cider and mojitos (yes, people CAN still drink when getting cancer treatment - we are really quite normal like that lol).

Upon my return home, there was a bit of a further flurry of activity - dog needed teeth scaled and polished, my niece had to have open knee surgery, I had umpteen more medical appointments, and I also squeezed in a trip to Dublin to see my Irish Sue 😊.  Part of all these activities is about making sure that all my affairs are in order before I get laid up for the best part of 3 months, part of it is about making sure I see all my loved ones, and the other part is that I know I am keeping myself deliberately busy so I don't overthink and get too nervous ahead of surgery.  I know this much about myself ☺️.

And... don't get me wrong... I know it's still a momentous thing I am about to have done, all to be as cancer free as possible, but doesn't mean I don't have wobbles... a few people have asked if I am not scared of dying on the operating table... so my response was... "well, I wasn't...."

However, joking aside, I did speak to the breast care nurse about the risk of dying during surgery, but I am pleased to report that she said in the 15 years she had worked there, it had never happened 😄😄😄.

Other funny things which have happened along the way... at one of the appointments, mum and I went  to get bacon rolls for breakfast before going to see oncologist.  As we were walking to the canteen, there was a distinct smell of crispy / on verge of burning bacon... and then mum turned round and realised that the canteen is actually opposite the burns unit... 😱😱😱.  It is actually quite funny, and I made lots of inappropriate jokes... but also pointed out that I also knew some hospitals where the canteen used to be beside the morgues.... 😜.

Anyways... moving on... (!)

Another appointment was my CT scan.  Having never had one before, I had no idea what to expect.

Like most things to do with me, it was not without its funny side 😄.

First off - cannula didn't want to go in.  My veins are now retracting into flight mode.  Once I finally got that in place, I was then told to get into hospital gown and to tape a paper clip to my belly button... yes, you read that correctly, a paperclip 😜.

Supposedly this acts like a marker so that the surgeons know where my umbilicus is for when they need to create me a new belly button next week. (Am absolutely fascinated at all the wee details I am getting re: surgery!)

Then I got on the bed, raised my arms and had a few practise runs before the contrast dye got put in to me.  All fine until the radiographer explained that when the dye was put into me, I might feel like I had wet myself.... "what the...????".

Anyway she then rushed to explain it was just a sensation, but I definitely would not do it in reality.  But words of comfort did not stop me clenching everything together and exerting extremely good bladder control!

Then... when the polo mint shape was going over me and taking lots of pictures, making a disconcerting shifting noise, and requiring me to  hold my breath... the fire alarm went off. 😜

At first I didn't appreciate that's what it was.  I actually thought I had done something wrong and I had mucked up the CT scan, or had wet myself or had not been holding breath properly!  But no, the radiographer came round and eventually explained somebody had pressed fire alarm instead of door release... phew!  

(Visions of me being rushed out with backless hospital gown with paper clip on my belly did not fill me with joy lol!)

On another note, I am most grateful that during the past few weeks I have been able to speak to some lovely ladies who have had the same surgery as me, and get the real low down on what to expect... and I never used to be interested in pictures of women's boobs before, and now I have an unnatural obsession!  

Indeed, a good friend actually took me into the toilet with her to show me her scars... to the rest of the population that may seem weird or some kind of sexual act... but it really isn't.  Quite a few women I met at breast cancer events have offered to show scars... I think because it helps to allay fears of those who have yet to go through surgery..,

However, I am guessing flashing boobs in public toilets may be deemed strange... but when I get to the sharing stage, I just need to remember it's for medical purposes, no money changes hands, and I do not require a pole to dance round just to show off my scars 😉

Then... my trip to Dublin was amazing... it's only with best friends who have known you literally for 20 years that you can sit down and get perspective... and constructive challenge.  (Aside from my immediate family, obviously!). 

Sue and I covered the whole range of emotions, and no subject was taboo... and then we went out, I got introduced to Gaelic football and quite a lot of drink, and actually a lot of pent up anxiety about surgery melted away.  Maybe the answer lies in cider? 😜

Whatever it was, it worked.  Well, at least until I was sitting in plane on runway to come home and the airplane door wouldn't close properly.  And I overheard the cabin staff talking about whether it was safe to fly if they could wedge the door shut... 😱😱😱. (Door did get properly fixed after 40 minutes thankfully!)

Had some great time with mum and sister too this past week... I am not underestimating how tough it is on them too... but take great delight in making my sister squeamish... even if I was just talking about corns on toes at the time!  But again, alcohol to the front... this time prosecco... "just the one" lol... 

(Have never been a big drinker btw, but these past few weeks makes it appear I am a binge drinking alcoholic!  Oops! 😜)

Managed to catch up with even more friends too, and laughed so much in last 2 weeks that I feel like I getting back to the old me 😜.  

That's partly as I think the chemo is leaving my system and I have much reduced side effects nowadays... so the paranoid, moody, chemically imbalanced and hormonal woman is now going back in her box 😄. (At least until surgical menopause is induced... them I reserve all rights to be banshee from hell lol!)

And the main reason I know chemo leaving my system?  I am now starting to feel cold again 😄.  Its still in between horrendous hot flushes... but 6 months of overheating and horrible sweats is now being balanced with an occasional shiver where I need a sweater lol... old Linz is peeking through! 

Finally for this blog, I had bloods taken in advance of my biophosphate infusion (more in next blog!) and a dental check up.

My lovely phlebotomist gave me a huge bear hug and wished me all the best... And that the staff team at the GP's surgery were all rooting for me 😄😄😄... I have also to stick my head in when I got out of hospital just to say hello and let them know how I was.

And then I had my scheduled 6 monthly dental appointment where I got told that my teeth are in perfect health and no issues... which given how sick I had been and various drugs, is nothing short of a miracle 😄😜😄.

So definitely on a high, definitely going into surgery with a 'can do' attitude, and feel at the point where I have sorted most admin things / paperwork in my personal life, and now I am just going to focus on recovery and achieving a model-like body 😉.

There are a few final things to sort and get done before Sunday... but quite laid back... and I have a fair few medical appointments and social engagements before sleeping under anaesthetic on Monday... but all good.

So on that stunningly cheery note... till next time! Xx 








Thursday 6 July 2017

Week 32: The world of benefits...

Week 32: Thursday 29 June - Wednesday 05 July 2017

This has definitely been the week of the paperwork...!

Between being on the phone to DWP for in excess of 3 hrs, and then on to the GP for 10 mins, the net results appear to be that I am eligible to apply for ESA payments in lieu of statutory sick pay, I 'may' qualify for PIP allowance since cancer has affected my daily living, Mum may qualify for carers' allowance in the future if I go downhill, and my GP has assessed all my impending surgeries and now signed me off for another 7 months.

To be honest, I found the whole thing quite overwhelming as I have never had to claim benefits before and despite DWP telling me what they think I should be applying for,  I also then have to go through a disability assessment.  The thing is, I don't actually feel disabled, so don't want to claim, but they insist that I go through the process.  

As far as I understand it though, the ESA payment is in lieu of work paying me Statutory Sick Pay, so whatever I get awarded, I need to inform work and they deduct that value from the salary they pay me... quite rightly, I am not allowed to make a profit whilst off sick. (Although I do have to say the letter from work is somewhat clumsily worded!)

However, the PIP allowance is not means tested and replaces Disability Living Allowance... even though I don't feel disabled!  But the issues of me being hospitalised, being so ill through chemo, fatigue when I can't get out of bed or walk more than 10 mins, and indeed, when I have limited movement post surgery supposedly all contribute to the assessment... 😢😢😢 I definitely have mixed feelings about all of this...

And then I got thrown a curve ball by the GP.  I had a phone appointment to get a fit note.  I only needed an extension from the current one which ended 30 June to cover chemo treatment, to the date of surgery on 24 July.  However, upon checking my notes and going through the fact that I have this first major surgery, possibly 2 revisions, and then the oophorectomy, she then wrote me a fit note declaring me unfit for work for the next 7 months!  

Don't get me wrong - for sending onto the DWP and making things nice and simple and hassle free - this is great.  But to be told now that it will be another 7 months off work seems huge.

Now - it may very well be that I don't need 7 months, and in which case I will be signed back to work as soon as I am clear. But wow. What a thought.  And brings home how many procedures I actually have to go through 😱.

(But thinking positively, I am concentrating on being cancer free, no risk and model-like body 😀😀😀.)

Managed to see a few more people this past week - another day at work, caught up with family and many more friends...   also managed to get my car serviced as well as getting my tyre replaced that had a random screw in it (goodness knows - it was a bloody big screw as well!!!).

There was a small saga with the car service, but the funny bit was when I actually dropped the car off...  

I was so tired, and it was 7am (having been awake since 4am), and basically a man in a big fluorescent jacket knocked on the window and asked if I was dropping off keys.  I said yes, and he took my keys and my name, and then I left to go home.  I was half way home before I kind of realised what I had done and had a minor panic about me giving my keys to a complete stranger.  I had visions of the police turning up and looking at me whilst saying "so Mrs McNeill... you gave your keys away voluntarily to the person who stole your car...?"  Thankfully the garage texted at 10am to say car was ready for collection - phew!!!!  That's the real danger of chemo fatigue / chemo fog brain 😔!!!

Anyway, after a further wee snooze, managed to go great guns on all types of home admin - got my dogs to vets for their annual vaccinations, tidied out paperwork and packed for my holidays... as well as fitting in a few pampering sessions too 😜.  (Much required lol!)

I know I am definitely now keeping uber busy deliberately - however have a friend's book to review and the planned mini breaks will hopefully allow me to relax and take my mind off stuff.

Finally this week - my oncologist was meant to discharge me.... however it seems I am not quite finished with the chemo unit... 🤔.

Instead I have to go back every 6 months for a bone strengthening infusion for the next 3 years.  However on positive note it should only be 15 min infusion and only 6 treatments 😀.

(This is required due to my future oophorectomy operation putting me into surgical menopause, meaning lack of hormones to protect bones from things like osteoporosis - and will also protect my bones against bone cancer too.)

We did have another discussion about participation in clinical research trials, but given my impending surgery, this is really not a go-er just now... (I don't fancy introducing more risks to complicated surgery, and the possibility it may affect wound recovery!!!)

I did kind of feel like it was a bit of a hard sell to be honest - it went from them saying that they appreciated I had had a very intensive aggressive chemo regime, and I had been quite sick... through to them saying that although they hoped that they got all the rogue cancer cells out via the chemo, there may still be a chance of developing a secondary cancer... and participating in the research trials may be of great benefit to avoid this possibility.... so definitely a bit of an emotional battle there.  But mum was there to make sure I didn't feel pressured into signing up for something I wasn't ready for... so I am having another meeting after surgery is complete to see if I will participate at that stage.  Don't get me wrong - I do want to be able to help others - I just don't want to be sick again or jeopardise my surgical recovery... we will see after Xmas! 🤔🤔🤔

Another funny though... the breast care nurse also told me that in preparation for my stay in hospital I have to go buy proper Bridget Jones B-I-G pants and granny-style nighties... makes me laugh as I may technically have a supermodel body but will be covered up like the wolf in 'Little Red Riding Hood' 😀😀😀.  (I DO have an overactive imagination lol!)   

But a great positive - they fit, and give me a new bra whilst I am in hospital - that has to be the best type of personal shopping experience ever!!! 

The other thing I got given yesterday was a really good article about what happens after cancer.  I am adding the link in here in case it helps anyone else... even for those who have not had cancer themselves, it may help support those in your life who have had it... 😀

http://www.workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-what.pdf

Anyway... the next (almost) week is all about rest and relaxation - am really looking forward to getting away with my parents... pretty sure there will be funny stories and observations along the way... those will be captured on the Mrs Mac blog 😀 - I love people watching, and I think under the cover of floppy hat and big sunglasses I will be able to capture a few holiday sagas hopefully!

So... till next time when I may have more updates on my bolshy cancer fight... ciao just now 😋 xx