Showing posts with label Second Hope. Show all posts
Showing posts with label Second Hope. Show all posts

Tuesday, 8 November 2016

Diversionary tactics

I haven't inflicted my burbling on you lot for ages.  Well your luck just ran out, I'm back.  I'm feeling twitchy, fearing that the scary orange git might actually win the American election.  So I'm trying some diversionary tactics which so far have included eating a bucketful of yummy shepherd's pie and tidying my underwear drawer.  Now I'm resorting to writing a blog post. Sorry.


Cyril gives the seal of approval to my underwear sorting
I had scan results last week.  The disease is unchanged.  Cue, yet again, surprise and relief.  As side effects go my eyes seem to be taking a hammering.  This is a known side effect of the trial chemo, SYD985, and can lead to having a chemo break or having to come off the treatment altogether.  I have regular eye examinations so we'll see what happens after the next one later this month.  I also seem to have some nerve damage, peripheral neuropathy, which isn't a known symptom for this particular chemo and caused the onc to get all excited. He prescribed a painkiller tailored to nerve damage.  I've adjusted to the painkiller now, and indeed it seems to be doing the job, but the first time I took it I felt like I taken a horse tranquiliser, then I spent a day being inordinately happy.  Normal service is now resumed.

The breathlessness, which I've been moaning about since forever, continues.  So yesterday I had another scan, an angiography, looking for blood clots in my lungs.  I should get the results in the next couple of days.
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The slow hair loss persists.  I found a really lovely wig place in the seething metropolis that is Much Wenlock.   I realise that this is going to be local to just about nobody other than me, but if you are in the area and in need of some extra hair then you could do much worse than going to see Nicky, who really knows her onions (and wigs).  I went with the other-half.  I tried on heaps of wigs and some of them looked truly dreadful on me.  The highlight was when he pointed out that I looked like one of the blokes out of Buck's Fizz in one of the wigs.  Even the very professional Nicky couldn't help doubling up at that one.  Anyway in the end I settled on this (the frown lines were caused by the trauma of taking a selfie):



I could've done with the wig the other day when we went out on another wheelchair excursion, this time to our regular stomping ground, Attingham Park.  I learned two valuable lessons on this trip.  1)  Being wheeled around is flipping freezing, wear twice as many clothes as you think you're going to need, and a wig.  2)  On no account set off on a wheelchair perambulation thinking to yourself, as I did, "Oh I think I need a wee, but it'll be OK I'll leave it till I get back".  Oh boy.  Half an hour of being jolted about on uneven paths played havoc with  my bladder.  By the time we got back to the main buildings I didn't know what to do with myself. I leapt out of the wheelchair and sprinted up the path to the public loos.  Passers by must've thought I had a miracle cure.  On the plus side it was nice to get out and there was still colour in the walled garden despite the onset of autumn/winter.


 

While the other-half has been lovely, escorting me to numerous medical appointments and wheeling me about in my unwinged chariot, he has also been a major pain in the arse.

Exhibit one

 
Here he is panicking in a clothes shop (Fat Face for the eagle eyed amongst you) when he tried a gilet on and got stuck in it when the zip jammed.  Readers, he ended up buying it, I kid you not.

Exhibit two

 
Here's Nev having a bit of a tantrum.  He decided to sort out the kitchen cupboards where, unsurprisingly, half the stuff was out-of-date.  "I hate waste" he cried and generally grumped about the place for a good half hour.  Boo hoo hoo.

Then there are the Nevisms.  In the past he has uttered such classics as "that rabbit is memorised" (when he meant mesmerised) and "Is the Pope Jewish?", er no.  Yesterday he excelled himself.  We were heading off to the hospital for my scan.  He asked me which department we had to go to.  "Is it where you had your autopsy?" he asked.  Cheers Nev.  That's a happy thought.  (He meant biopsy by the way.  Idiot.)

Other family members have also been looking after me a treat.  My sisters are running a meals on wheels service to beat all others.  It's spaghetti bolognaise tomorrow night.  Mitts off, it's all mine.

Nearly all my hospital appointments now take place in Manchester (since being referred to the Christie by my local hospital).  This is, in many ways, a good thing.  It's great to get treatment at a centre of excellence.  However, it is a bit of a trek, one hour forty minutes each way.  I shouldn't moan really as many people travel much further.  Anyway, on our last couple of visits, with time to kill between appointments we've popped into the Maggie's Centre near the hospital.  Maggie's Centres are places offering all sorts of support to people with cancer (and their families etc) in an non-hospital enviroment - more info here.  We went in just to have a cup of coffee and what a lovely surprise it was.  I took a couple of photos which give an idea what it's like

 




If I tell you that the building was designed by Norman Foster you'll understand that my photos don't do it justice.  You can get a better idea of it by looking at the Manchester Maggie's website.  If you're in the UK there's also a TV programme on Maggie's called Building Hope (which is available for a few weeks).  I haven't seen it myself yet but it might well be worth a look.

Finally, I'd be putting a massive and false cheery spin on things if I was to pretend that everything is rosy-ish.  As I've mentioned before I'm a member of an online support group for people with secondary breast cancer.  This group is hugely important to me.  Recently we had five deaths in just three days.  This is, of course, the nature of the disease, killing as it does approximately 1,200 people in the UK every month.  All untimely deaths are tragedies and losing people you've built bonds with, both online and in person, is hard.  It's also a reminder of where this disease ultimately leads for all of us.  There's not a lot more to say other than to link to Second Hope, the secondary breast cancer charity which meant so much to the women we recently lost.


Tuesday, 3 May 2016

Kath




I first came across Kath Marsland when we both started blogging for a breast cancer charity's online magazine.  At that point she was recovering from treatment for primary breast cancer.  Since then we've exchanged emails and messages about life, the universe and everything.

During the next few months Kath, like 30% of all people who have had primary breast cancer, went on to be diagnosed with metastatic breast cancer (the cancer, now incurable, had spread to other parts of the body).  Throughout it all Kath maintained her fantastic sense of humour and sickeningly brilliant (me, jealous?) writing style.

As her disease progressed Kath thoroughly researched her options and had started fund raising to enable her to seek treatment in Germany.  

I'm very sad to say that Kath died just over a week ago, before she had the chance to go to the German clinic.  I read today that Kath had asked that in the event of her death any money raised on her behalf should be donated to Second Hope, the only UK charity focusing solely on metastatic breast cancer.

I'm writing about Kath here because I want to assure anyone who donated to her treatment via my Facebook post that the money will be going to a very worthy cause and, more importantly, because I want to commemorate, in my own small way, the life of a lovely, funny and very talented young woman.  

Some relevant links:

Kath's amazing blog

An article about Kath in the Manchester Evening News 

Information about Second Hope

Sunday, 8 November 2015

Cheers and jeers

Well what an up and down couple of weeks it's been.

The biggest jeer should be reserved for Alistair Burt, a Conservative Health Minister, who scuppered the passing of a law which would have seen off-patent drugs (for conditions including cancer) made available to the National Health Service (NHS) at low prices.  Not only did Mr Burt filibuster the proposed legislation he also accused his opponents of "shroud waving".  Classy.  You can read more about it by clicking here or just take my word for it that the man is a total and utter shit.

The other crappy thing that happened was of a more personal nature.  I discovered a lump on my chest.  I only had a week or so to wait for the results of my recent CT scan so I knew I'd get answers fairly quickly but it certainly made the days approaching my oncology appointment even more stressful than usual.  Given the appearance of this lump I was convinced that my current chemo, Eribulin, wasn't working.  So imagine my surprise and delight when I was told that the cancer is currently stable.  The oncologist also had a good poke around my chest and said that she thought the lump was bone.  She's getting the radiologist to double check my scan but is fairly confident that the lump is nothing to worry about.  So the plan is now for me to continue on Eribulin and have another CT scan in January.  What a relief. 

Honestly, it was like the sun breaking through the cloud
There was more good news.  You may remember that a while back I was on a drug trial for a chemo called TDM1 (trade name Kadcyla).  This drug worked really well for me for 18 months with very limited side effects.  There has been a lot of hoo-ha about kadcyla due to its cost and there was a very real threat that it would be removed from the Cancer Drugs Fund (CDF) meaning that it wouldn't be available to NHS patients.  However, a decision has been made to keep kadcyla on the CDF. Hallelujah.

Also on the plus side I have been diverted by having all three sisters in the UK and plaguing spending time with me. 

And I've been a right old culture vulture.  On the day before seeing my oncologist I took my mind off things by leaving the sticks and heading to London to see the British Museum's exhibition on the Celts.  Then, just a few days later, I went to Birmingham Museum and Art Gallery to check out the pre-Raphaelites and the Staffordshire Hoard.  While I was in Birmingham I also took the opportunity to visit the new shopping centre but, you will be relieved to hear, I didn't let this sully my pure and academic soul.  Please ignore any malicious rumours that I had to be dragged away sobbing from the cashmere jumpers in John Lewis.

Talking of shopping, it's not long until Christmas you know.  Don't hate me.  I'm trying to help.  You could order some beautiful cards from Ebay.   All proceeds will go to Second Hope (the new and only UK charity specifically for people with metastatic breast cancer).  Go on, you know you want to.


 

Tuesday, 29 September 2015

Second Hope

So here it is, the exciting news I've been hinting at (with all the delicacy of a drunken hippo) for the past few weeks.

Second Hope is a brand new charity that I'm absolutely chuffed about.  It's the only charity in the UK specifically for people with metastatic breast cancer (also known as advanced, secondary or Stage IV breast cancer).  It aims to raise awareness, provide support, campaign and also fund research.

Please have a look at the Second Hope website where there is loads of information including practical advice, more about the charity's aims, founder, trustees etc  (and even a little bit by me).  

I've mentioned time and again in this blog how isolated and hopeless a diagnosis of metastatic breast cancer can make people feel.  This charity is a real light in the darkness.  

Sadly the founder of Second Hope, Julie Phillips, died on Saturday, missing the launch of her brainchild by just a few days.  This heart-breaking news has rocked the online metastatic breast cancer group of which I'm a member, but we are united in our determination that Second Hope will go from strength to strength and be a lasting and fitting legacy for a remarkable woman.  

I cannot overstate how much the launch of this charity means to me.  Please, please take a look at the website, like the Facebook page and maybe even consider making a donation.

Thank you.