Out of hospital..

Just a quick update to let you all know that Frances has been released from hospital today.
As expected, the side effects from the radiation have left her pretty exhausted and she need to rest up for a few days before her next chemo on Thursday.
Mum and Dad will have the fire stoked for her in Ballarat!

Jackie

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An update from Frances today!

 

Todays update is from Frances (with a little help from Mum)

Image

 

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May 16 Health Update

Today Frances started the first of five rounds of full head radiation. They believe the side effects from the treatment will be minimal over the next few days. Generally a week or so after treatment is when the more major side effects start. Hopefully they aren’t too bad!

They have confirmed Frances is defiantly starting chemo but are still debating when that’s going to be. She needs a rest period after radiation and her oncologist and radiologist are trying to get the balance right.

All going to plan they may let Frances out of hospital after radiation treatment is complete. She can then come back on a weekly basis for chemo and rest up at home.

Anyone that’s in Melbourne over the weekend, please feel free to drop in an say hi. Things are pretty boring and quite at Peter Mac on weekends and a know she would love it!

Jackie

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May 14 Health update

Last night Frances was transferred to Peter Mac, she feels more comfortable there as they understand her history.

Today she has seen several different doctors, all looking after different things from the oncology side of things to pharmacy, pain management, radiotherapy and any other department that’s looking after her. We know she’s in good hands.

They have decided that the priority is to start radiotherapy this Friday, for 2 full head treatments to reduce the swelling in her brain. Currently she is high doses of steroids to help the symptoms but they had said there are health risks for patients being on high doses for long periods of time.

Last weeks liver ultrasound came back and showed the cancer in her liver has grown. The oncologist has decided to start another chemotherapy to focus on the liver after the radiotherapy has been completed in around a weeks time. The chemo is similar to one Frances had quite some time ago. (Taxol I think) They’ll know in three treatments if it’s working. Fingers crossed..

With so many doctors, nurses and visitors today has been very draining on Frances, especially because she is finding it difficult to communicate.

In regards to communication, Frances has asked that if anyone wishes to contact her they are welcome to, but she asks for no text messages as she can’t read them. It’s making her quite upset to try and read anything. I’m sure you can understand that this would be very distressing for anyone.

Frances has her phone and would love some calls from friends and family. If she can’t answer please remember to leave a voicemail and she will get back to you when she’s able to. She’s doing heaps better with the speech side of things but still stumbles a bit, she finds if there is too many people or distractions she can’t focus on what she has to say.

Finally, Frances is able to have visitors and I’m sure she would love to see some other familiar faces. She is in ward 9.

Jackie

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May 13 Update

Apologies for the blank update yesterday. The update I wrote ended up in cyberspace somewhere.

Frances is still in the Royal Melbourne and we are waiting on word for a transfer time to Peter Mac.

She had to stay here and wait to see a neurosurgeon. The neurosurgeon came late last night and said unfortunately it is not an option to operate. The team at Peter Mac will work out the next treatment plan. Most likely they will start the full head radiation this week. We’ll know more on that later today hopefully.

The condition Frances has is called Dysphasia (google for more info). It’s still difficult to communicate and she is getting quite frustrated. A new symptom that started last night is double vision, which is quite concerning although it seems better this morning.

Frances said she can understand what we are all saying but when she responds the words just don’t come out correctly!

The speech therapist has been in this morning to help Frances with some communication strategies. The therapist was also able to give us some advice on how we can help her, which was handy.

I’ve been passing on all of the well wishes from everyone and Mum, Dad and the rest of us appreciate everyone’s support.

I’ll update once Frances is settled in Peter Mac later today or tomorrow.

Jackie
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Frances update

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Frances Update

A little while ago Frances asked me is she was ever unable to write her blog could I please do it for her.

At the time I said yes, at the same time I was thinking how the hell was I ever going to be able to write like her!

I really hope the next update you get is from Frances, but until then you have me, Jackie (sister)

Today Frances was admitted to the Royal Melbourne Hospital after an “episode” which has caused stroke like symptoms. She is having difficulty communicating in writing and verbally and is very confused. From what we understand the tumours in her skull and in the membrane surrounding the brain are causing quite bad swelling which is pushing on her brain.

The doctors are running tests and scans to determine what they do next and they will be transferring her to Peter Mac tomorrow sometime.

Please pray the next update is from Frances.

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Progress on a seemingly impossible task

You might recall an item on my wishlist, or unfinished business, where I’ve been chasing up some photos I had taken when I lived in London.

The original post is here.

Overnight my lovely friend from London, Deb sent me some valuable info! The name of the studio, where is was and the fact that it wet into administration in November 2001. Poo! Well, kind of. I’ve done a bit of digging, and it seems that some time after they went bust, someone who worked at the company, perhaps the owners started contacting previous clients and trying to sell the photos off cheap. This all happened around 18 months ago, which is a while, but there’s still a chance that the same people have the photos and would be willing to sell them. They also may have junked them after the revenue dried up, but I’m an optimist. I’ve also discovered that I’m a reasonably good stalker! I may have missed my calling.

There are quite a lot of forum posts about the collapse of this company, Doubletake Studios. It seems that a lot of clients owed them a lot of money, as they signed up for ridiculously priced (thousands of pounds) photographic packages, and were paying them off over years. Lots of them were trying to get out of paying them the balances owed after the company went bust. Some time after this, previous clients started getting randomly contacted by what they thought was a third-party who supposedly bought Doubletake Studios photo catalogue, and were selling photos off cheap.

Some smart cookies did some digging behind the domain registrars (who registered the website names) for each of these companies, and found that a lot of the people were closely linked. To cut a long story short, I’ve now contacted, and come up with this guy, after stalking him on Linkedin and the company he now works for’s website.

I sent him an email, but I haven’t has a response yet. He may not have the photos, he may not even be involved! I just hope that he does, has a heart, and will help me get the photos.

Come on Artur! Be a good dude… Photo credit goes to you on this one, I think! Apologies if you don’t have anything to do with it, or access to the Doubletake photos.

Artur the photo dude

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Posted in Life's ponderings, Unfinished Business

May the seventh be…. badder than bad stuff!

I was almost going to call this post “I am not a greeting card”, but I thought it would not only be confusing, bus inappropriate considering people are waiting to find out results. The greeting card statement comes form the fact that people often talk to me in cliches. Please don’t, it sucks… That is all I have to say on that.

As you may have guessed, today was fairly shitty. Or at least it has been so far. I started off the day with radiotherapy setup for my whole brain radiation that should start next week. I asked the girls to take a picture of it for me. Mum keeps asking about the mask. Yes, it’s just like the one on RPA! This one’s a bit different to the one I had last time, as it doesn’t need to cover my shoulders. It was a lot quicker to set up and seems more comfortable.

Radiotherapy mask

Then, I got a lecture from my pain doctor and palliative care nurse about making sure I make use of the resources, such as home nurses and patient transport that I supposedly haven’t been making enough use of. I promised them I’d be taking it very easy while having radiotherapy. Little did I know, they knew something I didn’t.

After a quick trip upstairs to physio (four appointments in one hospital before lunchtime – that’s good organisation), I saw my new oncologist, and she gave me the bad news. My new-fangled, expensive chemo, Eribulin, seems to be quite ephemeral. I could have said something smutty about it needing some nasal spray.. oh I did! In any case, it’s not working anymore, but it looks like we discovered that really quite quickly, as it was still working two two weeks ago.

My liver function tests, which were improving with every treatment have plateaued, and my tumour markers, which have been stable, have increased. All that means I don’t need to take, or pay for Eribulin any more. Yay for silver linings! Boo for yet another chemo. My doctor is going to review everything again, look at some more scans and come up with suggestions by next Wednesday. I’m going to do some research as well, not to try and second guess what she was saying or add anything else into the mix, but so I have some clue what she’s talking about when she’s giving me the options. I thought I was pretty up with it, but she mentioned a couple of things I’ve never heard of. I was impressed. She was great at not only delivering bad news (it’s quite a skill) and making me feel part of the decision-making process. When my usual oncologist took off to Cambridge to do research for 6 months she told me I was in excellent hands, and I feel like I am.

While it’s bad – really quite bad, there’s no more time for pussy-footing around about it – there are still options.

There’s also another silver lining. No chemo tomorrow means I’ll definitely be well enough to go to the Field of Women on Saturday night at the MCG. Anyone who wants to join, it is by all accounts an amazing experience.

For-me

Anyway, steer clear of the cliches!

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May the fifth be…. better? Results day.

No beating around the bush. All of the little bits and bobs hanging around, unwanted, in my brain have not been playing fair. There are a couple of new bits, and one bob making itself known in a rather annoying way beside my right eye, and the ones that were there before haven’t gone anywhere. Time to hit them all with a dose or five of radiation.

They’ll probably need to irradiate my whole brain, so I’ll get quite tired. As with all radiation it doesn’t hurt. Oh, any it will make my hair fall out. Lucky I don’t have to worry about that!

The scan results on the rest of my body, particularly my liver were inconclusive, which is a real pain, as I have to wait until Wednesday for results. My liver has swelled or grown due to the steroids I’m on as well as the resulting layer of fat they’ve deposited around my middle. Gosh cancer is fun! This fatty and inflamed liver is making it difficult to see what’s really going on in there. It might mean more, different types of scans, but there’s going to be some conferring and pondering before I see my medical oncologist on Wednesday. While that sounds worrying, it’s not likely to be bad (I hope), as my blood results continue to be moving in the right direction. Unless something dramatic has happened in the last two weeks, I’m sure the chemo is still working, and that’s the main thing.

More news on Wednesday I hope, and hopefully an update on when they start zapping my brain.

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