Tuesday, 13 February 2018

Guess who's back??

Me!

How are you all?? Hope you had a great Christmas and New Year (totally seems like ages ago now)

THE Holiday

Sunrise over Angkor Wat....a lifetime dream fulfilled

Wow, wow, and wow....our trip to Thailand and Cambodia was just so wonderful.  Full of memorable and humbling experiences.  The pinnacle was watching the sunrise over Angkor Wat, a place I've always wanted to see.  It was stunning.  The temples in both countries are amazing - as is the food - yum-o-rama !!!
Congee for breakfast in Cambodia

BBQ pork in Thailand

Birthday coconut.... Happy 44th b'day Timmy in Cambodia

Food in Siem Reap

Street food tour in Bangkok

What I wasn't expecting was how incredibly friendly all the people were and so generous in spirit, despite many of them being so poor.  Also it was really interesting talking to the guides as they all had their own quite strong political views and opinions on their monarchs. 

Both countries exceeded our expectations and I'd love to go back and explore more of Thailand.  I feel incredibly lucky to have visited such exhilarating places.  A feast for the senses and Tim and I made memories we'll never forget.

Here are a shed load of photos in a random order before the rest of the blog.... soz about that.
In the Etihad business class lounge

And relax...our first few days were in Phuket

New Year's day at the beach

Freedom beach, Phuket

Sunset in Siem Reap 

Our hotel in Siem Reap, Cambodia....

New Year's Day evening....drunk in Patong (spot the pole dancer behind us)

An early morning flight on Tim's b'day (opening cards at Phuket airport)

Lara Croft territory in Cambodia

Our hotel before heading out for dinner on Tim's b'day

Pub Street, Siem Reap

Our transport around a Cambodian village

Tim milling the rice

This beetle fell right next to me then our guide picked it up....I crapped myself!!

Beautiful

Buddhist temple where Tim and I were 'blessed'

Temples








Phnom Penh Royal Palace


Chilling in Bangkok

Rooftop bar Cambodian style

Phnom Penh Independence Monument



Who's house??

Our guide for our street food tour in a tuk tuk - Bangkok



Phuket hotel pool

The monks were taking selfies too....so bizarre. Bangkok

A LOT of gold...Bangkok


The giant buddha

New Year's Eve in Thailand

NYE 2017

Cambodia temples



Back to reality


When we got back, reality hit...I was given some crap news about one of my fab friends who is also living with cancer.  She knows who she is, and she knows she is a totally ace person and she is doing what makes her happy in the best way she can at the moment. Go girlfriend... We've had fun throwing each other abuse and catching up with secret santa pressies since I've been back.

My own living with cancer experiences started the week I got back too when I was meant to be having my routine three monthly CT scan.  This was my first trip to Redditch hospital (as it was the only place they could get an appointment for me).  So dad took me over there... The appointment was at 2.30pm and I'd finished work at 1pm.  For some reason I wasn't 'feeling it' and had a suspicion that things weren't going to go my way on this occasion.  How right I was...

After seemingly everyone else in the waiting room (including those who'd got there after me) were called through, the door where the radiology nurses sit opened and I could hear my name and something about 'is she here?', so I shout 'I'm here' and then someone came out.

She then takes me to the side of the waiting area to sit on a hospital bed and pulls a curtain around us so everyone can still hear.  She's going to do my cannula today. 

The first thing she says is 'how are your veins' and, as usual, my stock answer is 'not very good', to which she replies 'oh no, I've been given really tricky patients today'.  Now, as someone (as you all know) who hates veins and blood tests and cannulas, this is not what I want to hear a trained professional say. 

She pumps up the bed so I'm a bit higher and then tells me to straighten my arm, then my favourite bit begins where they are poking around to see if they can get a vein.  This seems to be forever, then she decides to go in - I think she's done it as she does a slight wiggle of the needle, but no, she says she isn't in and has to take it out...I then proceed to bleed a lot (#standard).  This has already got me uptight as we all know that I only really have one decent vein in my arm after all my previous chemo etc, and I can only have them inserted into my left arm because I've had lymph nodes removed in my right.

So, she tries again and immediately it hurts and stings and I flinch and then she says 'oh no, I've come over all hot, I'm not going to try anymore'... WTactualF.  Was she joking?!  I then came over all hot at this point (and not in a good way!!!) Honestly, they really need full on tried and tested people who can insert cannulas in a CT/MRI clinic because the stress it causes is a nightmare for those of us with shit veins.  She said that she would leave it... er, and what happens now??

A few minutes later I'm then called through to the CT scan room (which is always freezing and isn't good for veins either).  The radiologist then decides to have a go in a different vein in the crook of my arm while I'm lying on the machine. He really gives it a jiggle around and it still won't take.  Then he tries my hand, and that doesn't take, and then he asks if he can have a go in the same vein as the nurse before....I say yes as obviously I want to make sure I can get my proper CT scan, it's awful and I'm crying at this point, I literally had tears rolling into my ears (which was a new experience for me). He tries, and fails.  I am so upset now.  The nurse said 'oh, don't you like needles?' Bloody cheek.  I mean, who does like needles?  I explain that I've got incurable cancer and I don't like veins and I'm finding the whole thing quite stressful.

The radiologist then consults with a Dr to see if I can have the CT scan without the dye injection (aka 'contrast') and they say yes, so it goes ahead.  Dad can see how upset I am when I get out of the room and neither of us can wait to get home.  It's the first time in ten years of cancer treatment that they haven't been able to complete a procedure.  I'm bloody fuming.

The next day I see Dr P for my regular meeting.  He said 'did I not request the contrast with your CT scan?' and I then had to explain to him what had happened.  He said he was unable to see my liver on the CT and therefore I will have to have another of those awful liver MRI scans (which, incidentally, I'm still waiting for the appointment for).  This is to see if my liver tumours are bigger/smaller/stable to work out whether I need to change my medication regime or have the ablation I've spoken about before.  However, he did say he couldn't see anything else in the bones on the CT scan, but he would need to wait for the report to be read properly before confirming that (I'm still waiting for that too). 

Put your back into it


The next thing to bore you with is my back cement debacle.

As you may remember in November last year, my original procedure date was cancelled due to a lack of beds, so I wasn't holding out much hope for my next procedure.

As soon as we were back from hols I called to see if it had been rearranged and was told that they were having trouble with beds again and she was sorting it out and would call me. I gave it another week and thought I'd call again.  I was then told that the procedure had been booked for 5 Feb, but would, again, depend on whether there was a bed available for me.  It was a good job I phoned, as I only ever received written confirmation of the appointment and what I needed to bring etc etc on Saturday 3 Feb (what a joke!)... especially as I need to let work know, arrange transport, arrange for the dog to be looked after while Tim is with me at the hospital etc etc.

Trying to get that letter was unbelievable - I had to make five phone calls in the week proceeding the procedure to try and get any information.  I was then told the letter had been sent on Wednesday, first class (this was the Friday).  I therefore asked if someone could read the content of the letter to me as I knew no one would be around on the Saturday to ask (and the procedure was meant to be on the Monday).  It was a good job I did as the letter informed me to call up the day before (ie Sunday) to confirm if there was a bed.  FFS!!!  So there was still no guarantee it was going ahead.  Lo and behold, the letter arrived on Saturday - although marked first class someone has posted it second class and not until the Thursday.

Then the fun really started.  I called up (as instructed) between 10am-11am on Sunday morning. 'No we don't have any beds available at the moment, we'll call you later'.

The hours roll by....I mean, how can I plan anything if I don't know what's going on...especially as it involves a trip to Coventry which is a right faff to get to. So I decide to call back at 2.30pm.  "We're trying to get you a bed in the day surgery unit and then you'll go back to Ward 35 after the procedure.  We'll call you back".  Eventually I get a call at 4.30pm....there is a bed. The lady from Ward 35 is going to send the relevant notes to the day surgery ward so they know what tests I need. 

I then pack (I hadn't bothered before as I was unsure whether it would be happening), Tim made us some sandwiches and we headed to Coventry.  We arrived at 6.30pm and headed for day surgery.  Did they have a clue who I was? Of course they didn't. Here we go....   They asked me to go and sit in the main waiting room while they sorted it out.  Tim and I ate our sarnies.

They then came back about 30 mins later and said they had worked out who I was and that a Dr would come to see me so we waited for about 40 mins.  A Dr arrived and listened to my chest, asked me some generic questions (allergies etc etc) and then said that someone would come and take blood and insert a cannula.  I was then given a bed.  I was starting to get really nervous.  My obs were taken and I was given a name tag.  I had to do an MRSA swab and urine test - they were both fine.
Before it all started going tits up

The bowl for my urine sample which had a leak!! Great

I didn't want Tim waiting around too late as he had to drive back home and get ready for work on Monday so he left at about 8.45pm.

I was told by the ward sister that the night Dr would come and do my bloods and cannula.  I sat reading (while people opposite me were snoring away ....good job I took ear plugs), and then I decided to get ready for bed and went to the toilets to get changed and have a wash.  I turned my light out at 10.20pm but the main ward lights were still on (I had an eye mask too).  Did I sleep, er no, not at all.

There was a woman who had arrived from Chile the dayand had a fall who was blabbering away in Spanish for ages, and then at 11.30pm the nurse came to take my obs again.  Still no sign of the night Dr.

Tossing and turning I had all sorts going through my head.  Then at 2.45am a nurse came to take my blood - 2.45am!?  At least she managed first time (thank god).  I asked her whether she would be doing my cannula and she asked if I was having a general, and I said 'no, just sedation' and then she said that they would do the cannula in the procedure room so I wasn't lying with it all night in my arm.  Seemed to make sense.

At 6.20am the lights went on and obs were being taken etc etc.  I was nil by mouth at this point and felt really woozy as I'd had no sleep...In the night, I'd had such panic attacks that I was shaking (which incidentally meant I pulled a muscle near my ribs...ouch).  Anyway, the ward sister comes in to ask if I need pain relief (er, no) and then says 'I'll come and give you your pre-op antibiotics in a minute'.  She then comes back with two syringes full and  looks at me and says 'where's your cannula?' I was told I didn't need it until the procedure. FFSx2.

As I'm nil by mouth they need to inject me with the liquid antibiotics.  I hear her ask one of the other nurses whether she can insert cannulas to which she replied 'no', so then the sister had to do it herself.  I was dreading it as she told me she doesn't do it very often.  She tried in my hand, wiggled around a lot and then took it out and I bled a LOT ... she  then went in the side of my arm and thank goodness managed to get it in (although there was a lot of blood again!!!) and then she injected the antibiotics which left a metallic taste.
Great!

At this point other patients were arriving to the day surgery for their procedures and all of them had the same tests as me, so why on earth I had to be in the night before is a complete joke and waste of resources (I found out later it's so they can guarantee me a bed on the night of the procedure, but that seems totally stupid to me).  Anyway, it was getting near to 9am (the time of my procedure) and no one had told me to put on a gown or anything.  The staff had changed to the day staff at this point and I felt a bit forgetten about so I pressed my buzzer to ask if someone could find out what was going on.  The time kept ticking by.  Then, bizarrely, I wrote to Tim (the one good thing about Cov hospital is that it has free wi fi!!) to say that I knew that Dr D (doing the procedure) had been on holiday the week before and I wonder if something has happened or he's ill or something?  Waiting, waiting....other patients who'd arrived in the morning had already been carted off to have their procedures.  Something was up.  Oh yes, it was....

At 9.40, two nurses came to the side of my bed and pulled the curtain around.... We're really sorry, but your consultant is ill and so your procedure is cancelled.  I KNEW IT!!!! I was absolutely devastated....after waiting since last September to have the procedure, it's now the second time of cancellation. 

Now I know Dr D can't help being ill - but surely they would have known first thing in the morning  that was the case and not kept me hanging around wondering what the hell was going on to tell me.  I had my head in my hands and said I knew they were only the messengers, but I've got incurable cancer and I need this procedure...when am I going to be a priority???  I then jumped out of bed and went somewhere to find phone signal.

Tim was already on his way to the hospital at this point with the expectation of seeing me in recovery once out of the procedure so I had to call him and tell him it had been cancelled.  He couldn't believe it either.  He'd hated leaving me in the hospital the night before and was also finding the whole thing quite stressful.  Now for anyone who knows Timmy B, they know him as a very calm, rational person, but when I told him the news he turned into 'fucked off Timmy and was bloody fuming....  I was obviously in tears too.... I then called my dad and told him, he was really upset as well.  What a morning.

I got back onto the ward and asked someone if they could grab me some food (it was near 10am now) and to take my cannula out.  The cannula was removed, I then got changed, had my toast and tea and asked if I needed to be officially discharged, they said 'no' and so I just packed up and left.  I couldn't wait to get off the ward. (Annoyingly I left my MP3 player at the hospital and they've said they can't find it....sigh...so now I need to buy a new one and a new SD card as all my music was on it...boo)

Timmy arrived and we hugged and then headed home.  I had a date with the sofa for most of the day as I was exhausted....we took the dog out in the sunshine, which was nice, and I wrote two complaint letters to the CEO and Chairman of the Acute Trust about everything that has gone on with me not being a priority and the waste of resources it had been with me in the night before, and then I consoled myself with a LOT of red wine in the evening.

I am booked in again for 21 Feb, but it depends on the bed availability...yawnsville... TO BE CONTINUED.

Fun times

In between times I had a totally awesome night out with the girls where I danced all night to, what Helen and Susie call, 'R&B shit', but which Jenn and I totally love... I've treated myself to some new make up recently so decided to try some of it out.
New HudaBeauty and Charlotte Tilbury purchases on show

Pout practice




Then after all the hospital faff, I could finally look forward to Kevin and Matthew's wedding which was taking place at Worcester's Guildhall. What a totally fab day we had.... We were sat on a great table, we ate pie and mash and in the evening did lots of dancing.
The happy couple

New frock and hat


The speeches

The work crew

And that's it for now.... I'll keep you posted on the back procedure, but don't hold your breath...

Much love to all. xx

Friday, 29 December 2017

Anniversary

29 December 2017

On this day 12 months ago, I was interviewed by BBC Hereford and Worcester for a 2016 round up about the Breast Unit and it finally opening its doors to patients.

On this day 12 months ago, Scarlett, my beautiful niece, turned 10.

On this day 12 months ago, I received a phone call just after 6pm from my consultant telling me my cancer had returned.

Today, I am travelling with the love of my life on a trip I've always wanted to take to Cambodia and Thailand.
Champagne in the Etihad business class lounge (yep, that's right,  we're flying business class courtesy of June Wilcox (love you mum)). xx

What a difference 12 months' makes!!


The latter part of this year has been quite difficult emotionally as I've gone through all the 'one year anniversary' stages and they've reminded me of 'back then' when I was in ignorant bliss of my current situation... When the pain started; when I told my consultant about it at the SnowBall; when I went for scans; the choir social that I couldn't join in because of the pain; singouts that I couldn't join in because of the pain; work Christmas party that I couldn't fully enjoy as I'd been put on anti-depressants as the hospital thought the pain was stress related....some of these may sound quite trivial, but these last three months I've been thinking about this a lot.  So today marks the last day of that anniversary.  The day of diagnosis.

Taking stock


So I'm taking stock of everything that I've done over the last 12 months - which has been extraordinary for so many reasons.

More charity fundraising for the Worcestershire Breast Unit Haven; more holidays; getting our lovely dog Rocco who has been so therapeutic in more ways than one; more enduring hospital appointments/scans/injections/blood tests/tablets/anxiety; more difficulty at seeing those who have had another year clear of cancer as I will never be able to have that again; more fatigue; more pain in my joints; the official opening of the Breast Unit and meeting the Countess of Wessex; singing in front of over 2000 people at the Symphony Hall; helping to raise over £350,000 as part of Breast Cancer Care's flagship Show event; putting on a stone in weight (sigh); meeting one of my idols, the beautiful Lisa Eldridge (and her fab assistant Jessie)......

As you can tell, it's been awesome and very hard at the same time, but I'm so glad I've had another year of life granted to me... Although there is part of me that thinks, 'crikey, that year has gone so quickly and I know I won't be granted loads more so that's one year out of my remaining entitlement that's flown by'.... but I can't dwell on thoughts like that and just look at the present, how I'm feeling now and also the fun things I've already got planned for 2018.... Two weddings, a trip to the States, the Snow Ball 3.....

So here's to you all as we close out 2017.  I'll be in Thailand on New Year's Eve so hope you have a good one.

Be thankful for all that you have. If you're unhappy with an aspect of your life, then change it....

Thank you for following me this year....long may it continue.

Health and happiness.  Much love, Kate. xx


Sunday, 24 December 2017

Merry Christmas everyone

Health and happiness to everyone.....


Just wanting to wish you all a wonderful Christmas and to say thank you for following me this year.

Quick round up


...of the last few weeks.

We took Rocco on his first holiday - we went to Brixham at the beginning of December.  It was wonderful.  We spent time with our friends Simon and Claire who loved Rocco too. We stayed in the most amazing property right on the harbour with gorgeous views and a huge bath tub!!

Rocco loved it - his first experience of a town, the sea, a beach, a cafe, a restaurant.  He did get covered by a wave though and didn't like that much (we, on the other hand, thought it was hilarious!!).







Rocco also experienced his first snow with us and LOVED it, and for the first time in ages, his paws were all pink and clean.  It was lovely to see him leaping about and catching snowballs.



He also had his first trip to the dog groomers (my friend Michelle has her own parlour) and he was really good - I was so chuffed.

Scarlett and my brother came down to visit last weekend and we went on our annual ice skate, which was lots of fun, then dad, Scarlett and I played lots of black jack in the evening



And Susie and I hosted our second band night on Fri 22 Dec and raised just over £3000 for the Worcestershire Breast Unit Haven.  What a way to end our fundraising for the year.  We were so chuffed.




Health


Well, mine has (touch wood) been OK - still going for the monthly jabs (although my denosomab is now going down to once every two months.

However, people around me haven't been having so much luck.

Tim has had an horrendous stomach bug leaving him off work for over a week and half.  In context, Tim has very good health, so I go to pot a bit when he isn't well as I am the 'ill' one.  He had to miss his work's Christmas party, seeing Star Wars with the boys and his annual ice skate and karaoke session with Scarlett. It's been pants (literally).

Sadly my mum (just this morning) has been diagnosed with mild pneumonia and has been incredibly poorly for nearly two weeks, so Christmas won't be the same without her this year (Tim and I will be taking round a Christmas dinner for her).

And my wonderful friend Helen is currently in hospital having been diagnosed with cancer on her brain and in her spine (like me) and suffering from the side effects of steroids and radiotherapy.  I mean - what a total pile of arse!!

The last couple of weeks have been difficult from that point of view, but friends and family are rallying around as usual being awesome.

So, as I write this on Christmas eve, be thankful for your health, family and friends.

Lots of love to you all.

Thank you again for your support.

Kate. xxx

Sunday, 10 December 2017

The leper

WARNING - primary breast cancer patients may not want to read this, and if you do, don't say I didn't warn you!!

Benefits


I'll begin with this one.... So yes, I certainly get a fair share of the NHS budget spent on me, and so it should be, but one thing I don't benefit from, is benefits.

I don't get child allowance (or whatever it's called now) for obvious reasons, I don't use the school system, I don't claim tax credits (as, again, without kids you're not entitled to anything), I don't claim unemployment benefit, I don't claim benefits full stop.

But I thought this should change. I have therefore commenced an application for personal independence allowance (or PIP), which used to be the disability living allowance, because I am now classified as disabled.

I filled in a huge form which asked me about how I'm impacted on a day to day basis with my condition e.g. can I cook for myself (well no, cos I'm crap at it!!), can I dress myself, can I get from A to B cognitively etc etc.  It took ages and it made me realise when I was completing it, that things are different for me now and I do struggle with certain things more than I did before.

Then, this week, I had to have a face to face assessment where someone working on behalf of the Department for Work and Pensions visits your house to basically go through pretty much the same questions.  She was with me for an hour and half, she was really nice, but did the classic - 'oh, my Uncle X had advanced lung cancer and he lived for years' - like  you can really compare me to that situation?!  Anyway, we carried on talking and when she asked me how Tim was coping, I broke down in tears.

Tim continues to be totally amazing, but can you even begin to imagine what he must be going through as the husband of someone who has an incurable, life limiting illness???  It must be soooo unbelievably difficult. 

He is, in fact, seeing a counsellor for this very reason at St Richard's Hospice which he is finding really helpful.  It is an exhausting and draining process as anyone who has ever had any sort of counselling will know.  He goes into work then goes to see her on Tuesdays at 10am, and then back to work afterwards.  I can't tell you how guilty that I feel that he is having to do that, it's because of me, and I sometimes struggle with that if I'm honest, but I'm so glad he's getting an opportunity to discuss this with someone completely objectively.  Also, big up to St Richard's Hospice who provide the counselling free of charge. They are amazing.

Anyway, we then carried on with the assessment and she told me at the end I'm very unlikely to get the benefit as I'm too well and not immobile.  I mean, I know I'm not immobile, but surely there must be something that I'm entitled to with my condition, so I've been in touch with Macmillan as they have their own reps in the Citizens Advice Bureau and they are calling me on Tuesday to discuss things.  Particularly, I want to get some advice about my pension, as I know I've mentioned before, I think it's terrible that I can't access that now, as I'm unlikely to reach retirement age.  I'll keep you posted....

The colony


But back to the main subject of today's blog, and it's a difficult one, but I did say this would much be a warts and all account of how I'm feeling and what I'm experiencing.

It goes something like this....Sometimes as a secondary breast cancer patient, I feel like a leper. 

Let me explain....

When you have primary breast cancer, the last thing you want to hear about/consider/believe is secondary breast cancer, for very obvious reasons. And I was one of those people...I just wanted to shut myself off from listening to stories of people (sometimes even of those that I knew) who had developed secondary breast cancer because of the gravity of what it means.

You've already faced 'death' in the face once and you just want to look forward after your treatment and start building a life again, and slowly you do.

After eight years, I had done just that and had honestly started to believe that it would be possible for me to live to an old age.  Suze and I often talked about growing old together and still going out for prosecco when we were old and wrinkly.

Also, as Susie often says herself, in terms of the 'odds', because my cancer was caught early and I had no lymph node involvement at all, that 'on paper' it would have been more likely for Susie to get a recurrence (as she did have lymph node involvement in her diagnosis), but THANK GOD, that is NOT the case and literally TODAY (10 Dec) she has celebrated 13 years cancer free which is THE BEST NEWS.....WAHOOOOOOOOOOOOOOOOOOO.

But anyway, I am now a member of an online secondary breast cancer patient sub-group of the Younger Women's Breast Cancer Network on Facebook.  At first, I didn't like to look at it too much as I was still coming to terms with my diagnosis, but now I dip in and out of it and it's good to 'chat' or read info about people going through the same treatments as me etc.

However, as I am also a member of the YBCN main page, there is obviously a lot of chat on there about women 'kicking cancer's ass' and 'I'm gonna get through this' and 'another year clear' etc etc... and I used to be EXACTLY the same, it's called HOPE, and it's a wonderful thing, but sometimes there is part of me that wants to warn people, 'you never know what's around the corner, look what happened to me'.  What a total bitch that makes me sound!!!  And I know there is unlikely to ever be anyone whose had primary who doesn't worry about such things, but thankfully as the years goes by, this feeling gets less and less, and long may it continue for all out there.

But I am the leper, I am the person whose condition many primary cancer patients don't really want to know about or acknowledge or pay attention to, and I TOTALLY get that because constantly worrying about recurrence can send you down a very deep rabbit hole.  And all of them will naturally, always worry about recurrence....I mean as soon as you have a pain in your big toe you think it's come back. Jeez... There is a lot of love and support on the forums for primary sufferers who may be going to see their consultants for check ups, or dealing with scanxiety and a lot of 'we've got your back', which is awesome, and I used to feel that same love, but the leper in me may not always be welcome in that group anymore.

And I really, really, really hope that it doesn't come back/morph into secondary, but statistically (and I don't know what those statistics are as I never wanted, and still don't want, to know what they are), some young women will fall into my leper sub-group and that fucking sucks.  I really wish it was the end of it and that anyone facing primary breast cancer would never have to worry about it, but sadly, this is unlikely to ever be the case.

So I will carry on as best I can and people can choose to read this or treat me as the leper that I have become and ignore it entirely, and I wouldn't blame them, but I feel forever grateful and thankful that my amazing friends and family who have stood by me (some who have also suffered from primary breast cancer) don't treat me like a leper and will let me talk about things as much or as little as I like.

I love you all. xx