ignorance hurts …

I can’t quite believe that it has been nearly 4 months since my last post!!

Those of you who follow my posts on Facebook will know that this hasn’t been an easy time from either myself or my family. I promise to bring you all up-to-date on what’s been happening in a future post but, today, want to address something a little more specific which has really upset me. It has also made me so angry it also appears to have propelled me out of my blogging funk!!

Today, during a conversation where one of my family was present, a comment along the lines of the following was made: treatment for Stage 4 cancer patients is pointless, it’s just a waste of time as they are going to die anyway. Whilst everyone is entitled to their own opinion and whilst this comment may not have been directed at me or my condition, I am so angry that somebody could be so ignorant and that one of my family had to witness this heartless and ignorant comment.

I have aggressive Stage 4 Triple Negative Breast Cancer, one of the most difficult breast cancers there is to treat and, over the past four months, my body has been absolutely ravaged by brain radiation, chemotherapy, steroids, antibiotics, pneumonia, constant pain and extreme fatigue.

Never once, during this time has my wonderful oncologist, Dr. S, or any of the doctors treating me suggested that continuing treatment is a waste of time. In fact, they have have done everything they can to encourage me, counsel me,  find new treatments, manage my pain and suggest alternative therapies that will help combat the effect that the ongoing chemotherapy will have on my body.

Our lives as a family have changed dramatically, instead of me being their primary care giver, they are now mine and do everything for me. I’ve had to give up a job that I absolutely loved, I can no longer drive and we have had to downsize our villa as I could no longer manage the stairs in our old villa. Planning anything is a mission as I never know whether I am going to be well enough to actually do anything until the day arrives. All of this upheaval and never once have they suggested that treatment is a waste of time or that I should consider giving up.

I am going to die at some point, that’s the grim reality of having Stage 4 cancer, I just don’t know how much time I have left … but I do know that I will never stop fighting and that the treatment, that some think is a waste of time, gives me more time with my family, which, to me, is the most important thing in the world.

Thank you to Dr. S and the wonderful team at the Comprehensive Cancer Centre at City Hospital for looking after me so well, giving me the best chance possible and for always encouraging me to never give up.

This post is dedicated to Almas, Hayley and Kelly, three very courageous women and friends of mine who have passed away from Metastatic Breast Cancer during this past year. They never gave up and continue to inspire me every day.

To  my fellow PINKLadies Metatvivors, you girls rock.

Some say ignorance is bliss, it can also be very hurtful.

Remember, always be kind.

Love always

Di xx

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scanxiety …

… be gone!!

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After managing to convince myself that both my bone and lung metastases had progressed, my PET CT scan was good.

This is something that neither Dr. Shaheenah or I were expecting given the levels of pain I have been experiencing in my back, hips and legs over the past two weeks.

I cannot actually begin to tell you how relieved I was to walk into Dr Shaheenah’s office and see her smiling at me, always a good thing!!

Briefly, one of the bone metastases on my lower spine as completely resolved itself and the remaining metastases in my lungs and lymph nodes are all showing lower levels of activity. The only negative on the scan is that fact that I have developed a pleural effusion on my right lung. This is a collection of fluid that forms in the lining of the lung. Dr Shaheenah is not too concerned and thinks it may be linked to all the steroids I have had to take.

I will continue on with my current chemotherapy protocol of Navelbine and 5FU aka Sid for another two cycles and then, at the end of April, we will do another PET CT scan to assess progress.

Now on to other things …

Princess Fiona has now been replaced by Dr. Evil … the high doses of steroids that I have had to take over the last eight weeks have really taken their toll. I have turned into a giant puffball and am a dead ringer for Dr Evil. Aside to being swollen and puffy, I have experienced a large amount of muscle weakness, this is likely to be why I have been in so much pain. I struggle to stand up or stand for too long and walking even a short distance has become a problem – the wheelchair has had to make an appearance again but, hopefully this will not be for too long.

I have nearly weaned myself off the steroids but it is likely to take another three to four weeks before my body starts getting back to normal. Can’t even begin to tell you how much I am looking forward to that.

Whole brain radiation has probably been the hardest treatment I have done to date. The actual radiation was not difficult but the side-effects and the recovery has been incredibly hard and there have been a few times in the past few weeks when I’ve just wanted to give up but, luckily, I have had a project to focus on that has really helped take my mind off things now and again.

Project House Move …

Yep, we finally found a new home … a brand new home that suits our needs perfectly.

We have found a lovely, light, bright and airy single storey villa in Mirdif with a lovely private swimming pool. We are going to be moving on the 12th of April and it has been great to have something to keep me busy.

Moving into this villa will make my life so much easier as everything will be on one level and I won’t have to tackle the stairs anymore which have become a real problem for me.

I must admit that the actual move is filling me with a little trepidation but we have a good company coming in to pack up and unpack on the other side and both Jemma and Steve will be around to supervise. I plan to just direct from Command Central!!

We are all super-excited to be moving into such a lovely home and having a fresh start somewhere that will have have such a large impact on my quality of life.

Watch this space for photos once we are in and settled.

Always xx

15 down …

… khallas, finito,  sephelile, klaar, finished!!

I’d be kidding myself if I said the last three weeks have been a walk in the park … in all honesty, this treatment is probably the toughest thing I have undergone since my diagnosis in 2014.

If you get tired, learn to rest, not quit (#SayQuotable)

Sometimes, when life is moving forward normally it’s almost easy to forget that I have a terminal illness but then, at times like these, I realise how sick I really am.

But …

I may be a little broken and battered but I am still standing!

It’s going to take around three weeks for the side effects to clear and I am really looking forward getting back to normal and life pre-steroids.

My radiation oncologist is confident that the treatment will be successful but we will only know how successful in six to eight weeks when I have another brain MRI. I’m thinking nothing but positive thoughts and not letting any scanxiety sneak in.

A big thank you needs to be said to the lovely Amanda, Jo and Raxa for getting me through the last three weeks, you ladies rock and I couldn’t have done it with out you.

There are a few photos at the end of this post to give you an idea of what radiation is all about.

I’m actually quite disappointed that I am not showing any signs of developing super powers yet … maybe they will still come.

Onwards and upwards xx

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10 down …

… 5 to go. I’m two thirds of the way through my whole brain radiation and the finish line is now firmly insight.

The last week in the swamp has been a very mixed one. I was hoping for an easier week with no chemo but unfortunately that did not happen. The side-effects from the radiation continue to kick my butt quite severely.

Early last week, I developed severe peripheral neuropathy (numbness, pins & needles & pain) on the left side of my face and the vision in my left eye deteriorated literally overnight. The neuropathy also spread quite rapidly to my left hand …surprised my iPhone is still in one piece as its spent more time on the floor than in my hand. Lastly, rather than walking, I have taken to lurching. Really not an attractive look!!

These symptoms resulted in a visit to the neurologist as both my oncologists were concerned that the sudden onset of the symptoms may signal a further spread of the metastases in the brain.

Now here comes the good news …

A CT scan showed that the 4 little beasts are stable, there is no further spread anywhere in the brain and the swelling of the brain is being well controlled by the steroids. The neurologist’s feeling is that my brain is just “pissed-off” and the peripheral neuropathy is it’s way of protesting.

More good news …

He prescribed some medication to help ease the peripheral neuropathy and said that it may also help with the steroid-related insomnia that I’ve been suffering from. I’ve started taking the medication on Wednesday night and last night I managed a full 8 hours of sleep. Absolute bonus as I haven’t slept more than 4 hours a night for the past 3 weeks. Long may it continue!

Not so great news …

My hair started falling out again yesterday in handfuls … I knew this was going to happen but was hoping to keep it for a little bit longer as I’ve been told that it can take between six and twelve months before it starts growing back after radiation.

Just hoping that it hangs in there for rest of this week to provide a little bit of scalp protection from the radiation and will then shave my head again next weekend.

I’ve always resisted getting a wig but think I might give-in and go and have a little fun choosing a new look that will get me through the next few months. Watch this space!!

I’m fully expecting the coming week to be a tough one as I am back on chemo on Sunday … but I can hope …

Always xx

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