move over dory …

I’m afraid that, over the last week, I’ve morphed from an, albeit barely treading water, beautiful tropical fish into a very swampy green Princess Fiona!!

The actual radiation is easy and only takes about ten minutes from start to finish … the whole process including the commute to the hospital takes around two hours.

It’s the side-effects that are proving nasty and started almost instantaneously … nausea, a permanent headache; pins and needles in my face, hands and feet;  zero taste; awful balance and co-ordination and a very swampy fuggy brain … none of which are helped by a lack of sleep … a side-effect of all the steroids I am taking to try and keep the swelling on the brain under control and the headaches manageable.

It’s been a long, tough week but I’m a third of he way through treatment … five fractions down, ten more to go!!

I have a feeling that it will be a couple of weeks before Princess Fiona makes way for Dory again but we’ll get there.

Watch this space!

Always xx

 

missing me …

This photo was taken on the 6th of November 2014 at our dear friend Martin’s 50th birthday party. img_1238-1Five week’s later, I received the diagnosis that started this epic battle.

If you had told me then what was going to unfold, I wouldn’t have believed a word of it. Me, breast cancer, metastatic breast cancer never!! Who are you kidding??

But my how things have changed and the last 10 days have probably been some of my toughest days so far.

The diagnosis that the cancer has spread to my brain has left me stunned.  The thought of brain radiation has freaked me out and, the fact that the doctors don’t know how my brain will react to the radiation, how severe the side-effects will be and whether there will be any permanent cognitive damage has left me completely terrified.

Those of you who know me well, know how independent and self-sufficient I am and how much I hate having to ask for help. It is probably one of my biggest weaknesses but now I am left with little choice.

I’ve been told that I am no longer allowed to drive, should consider giving up work permanently and can’t travel until both my brain and lung mets are stable as neither would withstand the pressure of an aircraft cabin at the moment.

The swelling on my brain combined with the position of the tumors has caused some spatial and cognitive deficiencies. To name but a few, I struggle to read (something I have always loved), lose track of what I’m saying and forget what I am doing, my balance is off and stairs are a challenge. All of these symptoms may resolve themselves once the radiation is completed but they may also get worse. Very confronting and scary.

Life is changing for all of us and this has been a week of huge introspection and tough decisions. There are no guarantees but we can only keep on going and face the beast head-on.

I found this quote on Pinterest earlier this week which pretty much sums up how I am feeling at the moment …

I miss me, the old me, the happy me, the bright me, the smiling me, the laughing me, the gone me …

Tomorrow I will have my first dose of whole brain radiation together with a targeted boost of radiation to the area where the tumors are located. I’ll have a total of 15 treatments (5 days a week for 3 weeks) and all being well, will finish treatment on the 11th of March.

Chemo will also continue as usual during this period so I expect it will be pretty brutal but I hope to be able to keep you all updated.

Don’t think I’m swimming at the moment but promise that I am definitely treading water until the tide turns a little …

Always xx

battle lines have been drawn …

It’s been a while since my last update but, despite a few ups and downs, the last few months have proved to be pretty plain sailing. However, it seems that just as I was starting to get comfortable, the beast decided it was time to shake things up again!

First, my last PET CT in mid-January showed that a few of the more stubborn mets in my lungs had grown slightly or showed higher levels of uptake and metabolic activity when compared to the scan I had in November. Nothing too dramatic and probably to be expected given all the interruptions to my chemo schedule in November and December because of a bad bacterial infection in my port.

My oncologist assured me this was just a minor blip but decided to shake things up and change my chemo protocol by stopping the Cisplatin and replacing it with a chemo called Navelbine. Navelbine is similar to Cisplatin but less toxic and easier to tolerate.  My best mate Sid aka 5-FU also continues. Happy days … another 12 weeks or chemo just when I had three weeks left of the old protocol and was hoping to go start some sort of maintenance protocol and slowly comes next!!

Not sure who I was trying to kid because what has happened in the last few days has certainly shaken things up …

Last week, after my second dose of Navelbine I started feeling really rotten … light-headed, breathless, very fatigued and generally off-balance. I also had quite a severe headache. Blood tests showed that my haemoglobin levels were low and on Thursday I had a transfusion of packed cells to give me a boost. It helped slightly  but the headache and balance issues continued. On Tuesday this week I saw my oncologist and she suggested we do a brain MRI “just to be on the safe side”…  I’m seriously beginning to hate that phrase!!

The MRI showed that, the thing I have feared the most since I was diagnosed with MBC,  has happened. The beast has managed to make its way up my spinal cord and into my brain and has made itself very comfortable in my cerebellum.  Four perfectly formed little buggers just parking off and causing havoc!!

The headache I was experiencing was caused by a build up of fluid on the brain … it has been trying to protect itself from any further damage and I spent Wednesday and Thursday in hospital receiving large doses of IV steroids to try and reduce the pressure.

FFS …

Brain mets cannot be treated with chemotherapy as the drugs are unable to cross the blood-brain barrier so cannot reach the brain. The only way of treating these buggers is with radiotherapy. As yet, a treatment plan has still not been finalised but I will have a better idea of what this will entail by Sunday.

Both my medical oncologist and my radiation oncologist are confident that we can beat this but have warned me that it is going to be a gruelling battle and, whilst the radiotherapy treatment will last for approximately three weeks, it will take approximately six to nine weeks for me to recover from the side effects. During this time, I will also continue with my chemotherapy program so that we can continue to treat the cancer that is in the rest of my body.

I am absolutely gutted by this new diagnosis and all the uncertainties that are connected to it and battle lines have now been drawn …

battle: a lengthy or difficult conflict or struggle (noun) or to struggle tenaciously to achieve or resist something (verb)

I am determined that I will get through this, that the radiation will have the same positive effect on the brain mets as it did on the bone mets and that I will get the “stable” diagnosis I have been hoping for.

For now, my family and I are trying still processing all of this but I promise that I will post regular updates on my blog or my Facebook page as and when I get them.

I also plan to keep on swimming … even if it is against the tide for a while.

Much love xxx