And so on...

Sooo I was going to wind this blog up as it wasn't feeling particularly relevant anymore.  However, and this is a BIG however, I had my 6 monthly oncology appointment this week, and it wasn't good.  What I had thought was a strained ligament at the top of my left leg turned out to be another tumour- right next to where the other one was.  Not what I wanted to hear!  There's no plan put in place yet as the oncologist wants me to have more blood tests and he wants to get the opinion of the surgeon that did my last op as to whether it needs any other treatment (chemo/radio etc). 

To say it was a shock is a huge understatement.  I've been back at work for nearly two years and, apart from the 'ligament strain' I've felt great!  I've had energy.  I lost all the weight I put on after the op and my hair has grown so I've been feeling like 'myself' again.  Admittedly, the leg has been causing problems for the last couple of weeks but this has thrown me.  The (slightly) positive side is that I've been given painkillers and steroids which have made it so much more comfortable in just a few days. 

Since we've told family and friends, we've had so many lovely messages of love and support, it's amazing.  Even if people say "I don't know what to say, but I'm here for you!", it means so much. 

As a weird coincidence- one of my Facebook memories on that day was a quote from one of my favourite authors- Karen Swan: "Above the Clouds the Sun is always Shining!" ("Christmas in the Snow").  In other words, I'm going to use it as a mantra to remain positive through this next hurdle.  We're going to try and do some nice things as much as we can.  (As a side note, we managed to go to our first gig in 7 years the other week.  We saw Molotov Jukebox, a band fronted by the actress who played Tonks in Harry Potter and Osha in Game of Thrones- even met her and she's AWESOME!)

Anyway- I'll try and post again when I know more. 

Onwards and Upwards.... again

Another long gap between blogs.  This is a good thing as it is mainly because I have spent the summer recovering and enjoying myself!  I have been discharged by the plastics team up at St Thomas', so just have to see the Surgeon to make sure I'm still on the right road to recovery so that I can go back to work.  I saw the Surgeon back in July and they're extremely confident that they have removed the tumour!  I will have regular scans and tests as a precaution but the last scans september/october time showed this to be true.


So I've been to two awesome weddings this year; one of my best friend's (at which I was Maid of Honour!) and my Brother in Law's.  At both I had a fabulous time and danced the night away (and rediscovered by fondness for rum and coke!)


On the advice of my oncologist I have done a fair bit of walking this year to help lose weight and build up strength.  We've been lucky enough to have a beautiful summer so had plenty of walks along the beach as well as Barbecues and homemade (by myself and sister in law) prosecco ice lollies (would thoroughly recommend!)  As a result (or despite) of all this, I've managed to lose some of the weight I regained when I left hospital and wasn't very mobile.  Coupled with the fact my hair has grown and I've had it coloured means I'm feeling a lot more like myself again.


Another exciting thing I've done is modeled in a fashion show for the Sussex Cancer Fund.  I got styled by a professional stylist (clothes from Next), hair cut and curled at a fancy salon and make up by Clinique.  It was such a special evening full of laughter and fun; and I met some truly inspiring ladies.  Also, because I was so enamored with the dress I wore for the final part of the show, a wonderful anonymous benefactor paid for it for me! I would really love to be able to thank them.  If I can't I will just say it here- Thank You.  It really is one of the kindest things ever!!


Hopefully things will continue on this way.  We have Christmas to look forward to and tomorrow hubs and I are off to Winter Wonderland in Hyde Park.  (We've already been to the Christmas Market in Leeds this year!)


Onwards and Upwards!

                                                  Photo by Gary Dellow

                                     

The Other Side

OK, so four weeks ago today I had my operation at St Thomas'.  It took 9 hours rather than the predicted 10 to 12 hours, and they didn't take out as many things as they thought they would have to.

Initially I had a few issues keeping the pain under control so it took a couple of days to get back onto the ward. It was a relief when I did, as the nurse looking after me in recovery was scary!

Once back on the ward, I was unable to eat for about 2 weeks as my body took a while to adjust to the changes. I ended up having to have a tube down my nose into my stomach which was highly unpleasant. I also managed to develop a chest infection and a UTI while I was in there! Fun times.  However, the nurses and doctors looking after me were all fantastic!

 I'm home now and slowly trying to build up my strength. I can't sit for long periods so spend most of the time in bed which does get frustrating but I know it won't be for long.

I also found out the other day from one of the specialist nurses that they were confident they'd got clear margins which is obviously a huge relief.  I've also had my picc line out and lost my chemo weight so already starting to feel like me again.

I would like to thank my lovely husband and mum for visiting me at every opportunity, my in laws for driving down south every weekend (and my father in law for looking after mum and hubs during my op!!), and my brothers, sis in law, aunts and cousins (from both sides) who came to visit.  Also, thanks to everyone who sent cards, messages etc. Especially my besties without whom I would've gone mad! The support I've had has been amazing and I feel so lucky!

Now I have to make a recovery and look  forward; have two weddings to go to this year for a start!!

Onwards and Upwards!

Lumos Maxima

Well life has certainly been full on, shall we say, since my last blog.  I shall get all the medical stuff out of the way first.  A couple of weeks before Christmas, we discovered that the chemo was finally working and had shrunk the tumour, although not to an operable size according to Guys.  Still, it was going in the right direction.  So I resumed chemo on New Years Eve after having six weeks break, which really helped recover a little bit- thanks to the head Chemo Nurse for insisting!!  This round I managed a lot better; aside from messed up sleeping patterns and constant tiredness.  My Oncologist let me reduce my anti sickness steroids which improved the sleep situation.  

So had my six chemos and MRI scan (thank goodness for diazapam) then four days after the last one which was a week ago on friday, I had a call from one of the nurses at Guys and St Thomas's (while having lunch with friends) asking me to go up for a examination under anesthetic on thursday, then suggested I go up the following day as I am a good couple of hours away.  This meant moving the Oncology appointment I had on the Wednesday afternoon to first thing Wednesday morning.  Sorted.  Tuesday night, however, involved another trip to A&E with a temp spike, on which I blame the horrific cold going around.  They sent me home with antibiotics as bloods were ok and I was going to the Cancer Centre the following morning anyway.  

Again, I have to praise the staff at the Cancer Center for their care and sympathy.  Despite preparing a Mad Hatter's Tea Party for Nutrition Week, they checked my temperature, reassured me and were generally lovely.  As was my Oncologist who said that it still hadn't shrunk enough but to see what this examination by the Surgeon said.  

So I dragged myself up to London, pretty much sleeping the whole way, and got seen by one of the specialist nurses who wanted to put me in the hospital hotel.  I got upset and pointed out I'd been in A&E so she immediately went to work to get me a bed on the ward.   Again, all the staff I encountered were lovely and so helpful.  

I had the procedure done first thing the following morning and requested to stay in another night as I couldn't face the trains.  The Surgeon (whom I had met at an outpatient's appointment in feb) came to see me and said that despite the size he reckons it's operable, and not to have any more chemo!!  Yay!!   So finally we are getting there. Obviously then I had a meltdown when left to myself just as a result of everything that had happened in the previous 48 hours.  So the operation will be in a few weeks time and hopefully the so and so will be OUT!!

It does sound like the last few months have been all trials and tribulations- they haven't.  Just before Christmas we did Hogwarts in the Snow with my In Laws.  And I was one of the best days ever!  We had such a laugh and it was so Christmassy I almost couldn't cope.  (I now can't watch The Prisoner of Azkaban without hearing my Sister in law's impression of Lenny Henry's character in it).  We spent Christmas with my family which was lovely, and New Year (after chemo) with my best friend.

We've had a trip Up North for my Father in Law's birthday (lots of cocktails- yay!), a couple of days in London as an early birthday treat for me where we stayed in the same hotel as last year and saw Bend it like Beckham.

So all in all it has been an emotional time but fingers crossed we are nearly there now.  There is, again, light at the end of the tunnel (hence the blog title; watching Harry Potter as I write!)  Hopefully 2016 will see the end of it all!! 

And The Beat Goes On

Wow- July to November is a long time.  And quite a lot has happened in that time; both good and bad.


I'll get the not so good out of the way first.  More chemo has been required, with Avastin (though technically I suppose that part is good as funding is now cut- thank you Tory Party).  It would be a lie to say I have found this lot a walk in the park.  I haven't.  My appetite has been up and down like a yoyo (though I did lose most of the stone I put on with the last lot!)  I have been given fortijuce but the Cancer Centre Nutritionist (lovely lady) to help me through the bad days.  I have been given morphine to cope with the acheyness in the legs and around the tumour.  Paracetomol is a bad idea as it masks a temperature.


Which leads me to the next issue.  I have been in A&E about 5, maybe 6 times in the last couple of months.  Luckily only one of them was more than a few hours; two nights as I was neutropenic (although I'll be honest, a day in bed watching 'Once Upon a Time' on my kindle wasn't an entirely bad thing.).  My suspicion is that I had a lurking UTI that was suppressed by anti-biotics until the last time I went.  Unfortunately, this happened the minute my In Laws arrived for a visit.  The hospital found the infection and sent me home with more specialised ABs which, although I felt not great for the next few days, meant I have felt better than I have in a while.


However, last Sunday I had another spike (which I now realise was due to the big wooly jumper I was wearing).  I phoned the in-patient Oncology ward and spoke to one of the lovely nurses who looked after me when I was in there last year.  She asked me many questions and said she thought I was ok, but she would phone me in half an hour to see if it had gone down, which it had. Then I thought to take the jumper off.  On Monday however, I had got myself into such a state that my mum took me into the chemo ward two hours early for my pre-chemo blood test just so I could get checked over and feel better.  The Nurses were lovely, so reassuring.  They did say to go home and they would phone if the blood test showed anything but I burst into tears and said I wanted to wait,  Which I did.  And it was fine- chemo commenced.  The following day, talking to one of the nurses, I decided to try out her meditation session to help with the anxiety which is one of the most difficult things for me to deal with.  So fingers crossed that will help.


Well that's all the bad stuff (I think).  This summer has had some great moments- four weddings attended.  Two of these were in Yorkshire.  The second one, we made a bit of a holiday of as it was my In Laws' wedding anniversary as well.  We were able to surprise them at their surprise party which was awesome.  It was also fun to sneakily hide out at my Brother-in-Law and Sister-in-Laws house.  We stayed for ten days which was awesome!


I was also able to see some of my Uni friends at one wedding which was fabulous.  So nice to catch u and have a laugh!


We have also had our house decorated.  The horrible York Stone Fireplace is gone, as is the dodgy wardrobe in the bedroom.  It is so nice to have a home how you want it (new sofas and everything!) although the decision making was difficult as I find it quite stressful.


We have done a couple of Comic Cons too, which were awesome fun.  One of them we even dressed up (I was Tonks from Harry Potter, Hubs was The Penguin as played by Burgess Meredith).  I love a Geek Out and they were a brilliant distraction.  Brilliant to feel like a person rather than a patient.


Another fab thing- I have been asked to be Maid of Honour next year for a wonderful friend I made in hospital last year.  We have been something of a support system to each other since and, despite being younger, she gets all Mumma Bear on me.  She is truely one of the blessings that I have had since my diagnosis.


That's not to say other people haven't been.  My Hubs and Mum have a tag team going so I'm not left on my own- which I don't like at the moment.  I have some lovely friends just on the other end of the phone or on Facebook ready with a supportive word or just a distraction when I need it.  I am lucky!


And now we're in the run up to Christmas (yes we are- sorry not sorry) and I am again in my regressive state wanting to watch Christmas films and can't wait to put the tree up.  In a couple of weeks time, we are going to Hogwarts in the Snow with my In Laws and Brother-in-Law and Sister-in-Law and I can't wait.  My sister in law and I regularly message each other about how excited we are!  Fun Times.


I think that's probably enough of my rambling for now.  Until next time, peeps! xxx

Just Keep Swimming

Ok, so last time I did an entry I was waiting for my op to have my expander removed.  I had that done the week after my birthday and it went well and was discharged a couple of hours later.  However, the following day I started to feel some, shall we say discomfort on my bum that got increasingly worse to the point I was crying in pain at 3 0'clock in the morning.  Because I had a councilling session booked in, I phoned my MacMillan nurse about it and she organised for me to see the radiologist in the unlikely event it was a side effect even after a month.  The radiologist took one look and said she'd get the doctor to look when I'd had my counselling (for which I lay on the floor with my legs on the chair).  Initially it was obvious the doctor thought I was making a fuss over nothing until she saw the blisters!  Immediately offered morphine, got another doctor to look and prescribed all sorts of lotions and potions.  It was a 'herpic virus' apparently.  Thankfully it cleared up pretty quickly after that.  Oh,yeah, during this time I had the scans I've been needing. Four attempts at canulation and a near panic attack in the MRI scanner later... Fun times.


The upshot of the scans was that they didn't think that the chemo had worked as well as they had hoped.   My thinking is that it did but the gap between the initial diagnosis and the start of chemo was a few months so it had got bigger.  Anyway, I got referred to Guys and sent to have a PET scan (more canulation, bleurgh!), the upshot of which was.... More Chemo!! Otherwise any operation would take 8 hours and they couldn't guarantee that they'd get it all (worst case scenario).  So back to the chemo ward I go (4 of 6 tomorrow).  I've been using the cold cap this time so I kind of look like a female Magneto... It gets better each time but its not the most pleasant experience.  The last two times I've had my best friend with me so we've had a laugh. I think the nurses were surprised that we spent the whole time taking and laughing.  I thought we were quite quiet for us, however!!!  So far I seem to be coping with it (the oncologist has been pleased) and I haven't noticed any hair loss so fingers crossed!!!


So when this is all done it's more scans- I've already asked for Valium during the MRI- can't be doing with more panic attacks!!


It's by now means been all bad; we've had some fab weekends with my in-laws, our third wedding anniversary (went to Southampton because it turns out that's where hubs realised that he wanted to marry me, bless him!), we even went to Comic Con (for any Marvel Heads, I had my photo taken with Fitz from Agents of SHIELD and asked a question at the Q&A) and we've got four weddings to look forward to!


Again, I've had wonderful support!  I joined the Young Breast Cancer Network on Facebook and met a couple of the ladies who live near me- that has been an amazing support (because, lets face it, if it hasn't happened to you, you don't know what it's like!)  I've got some great friends in real life and online (who quite frankly shamelessly fuel my Harry Potter obsession haha) as well as wonderful family support as always.


Yes I have down days and get sad and scared and wonder 'why me?', but overall I do try and stay positive.  To still a mantra from a certain blue pixar fish- Just Keep Swimming!!

And so on to the next step!

Yet again, it's been an eventful time between blogs!  At last count I'd had three more A&E visits (DAMN uti's!!) and a horrible reaction to the radiotherapy!  But there has also been Christmas (lovely, busy) and now that I'm recovering a bit, I have a couple of weeks off before The Next Thing.
Anyway, to backtrack.  Radiotherapy, all five and a half weeks of it.  Yeah.  At first it was fine.  All appointments were in the morning so I had the day to relax or do something out of the house if I felt up to it.  The drives in to the hospital were usually pleasant driving along the seafront, although downing a bottle of water in 10-15 minutes was not nice!  Then after a couple of weeks (and a couple of the aforementioned a&e trips, two overnight stays) I was suddenly feeling bad.  My tummy was sore and I couldn't eat much, or keep many things down.  My oncologist came to see me when I was having my picc line flushed and said to stop the antibiotics and the chemo infusion (the remainder was only about 5% of the overall treatment and he said he'd rather I wasn't suffering).  The following day I was falling asleep in the Radiotherapy waiting room, when one of the nurses I'd befriended came in and said I was going to lie on a trolley and she was getting the doctor.  The doctor sent me to x ray to check for blockages, and gave me different anti sickness pills.  What with that and being given supplement drinks by the nutritionist, I started to feel better after a couple of days. I can even say I'm starting to feel relatively human again now. So, bonus!! The staff in the cancer center were amazing, looking after me.  The chemo nurses and radiotherapists especially. It's an odd experience, lying semi naked in front of strangers while they commented on my socks (usually Christmas ones).  They were all so friendly, that I was at ease very quickly. Well, I was an old hand at it.  It was also lying there willingly knowing that my insides were being fried but there was no real alternative that I could see.

The next thing is having my fake boob taken out for my MRI scan.  Naturally one of the dates I was offered for my op was my birthday but I think, under the circumstances, I was entitled to a nice, non hospitalised day.  I saw the surgeon last week and,after an hours delay, fire alarm and the breast care nurse being nabbed by someone else, it was decided that the implant won't be replaced as the skin is too tight.  But that just means I may have the reconstruction sooner than planned. Hey hoe.

The last couple of weeks have been nice, gradually building up to things and some nice days with my hubs, in laws, mum and friends.  I still have down days but I think I've learnt to ride them out, knowing the next day would most likely be better.  Until then I cocoon and read. It's amazing how losing yourself in somewhere like Hogwarts can be very therapeutic!  Having my picc line out was definitely a high point- one less appendage to worry about,  it's all good!

Short but (hopefully) as sweet as it can be... to quote the late Leonard Nimoy- Live Long and Prosper.