good news, finally …

So, after a long silence and a lot of swimming, mostly against the tide, we finally got some good news today!!

As some of you know, chemotherapy has been on hold for a couple of weeks as I developed a nasty skin infection around my port which has had to heal properly before the port can be accessed again. This break gave my oncologist a chance to fit in another PET CT scan yesterday to check whether or not the current regime of chemotherapy is working effectively.

My “scanxiety” levels have been off the charts, especially after bad news we had following my PET in September, and as the report was only expected on Sunday, I was expecting to have a few anxious days but, I think the radiologist took mercy on me and I collected the report this afternoon.

The first words to jump off the page at me were “no evidence of new disease”.

AWESOME!!

It got even better though when I read on and saw that lesions in supra clavicular and mediastinal lymph nodes, right lung and bones are showing significant signs of improvement and in most cases, the lesions have shrunk considerably. The lesions around the left lung are proving to be a little more stubborn but are also showing signs of improvement.

AWESOME, AWESOME, AWESOME !!!

This means that the current regime of chemotherapy is doing what it’s supposed to do and, to say that I am absolutely thrilled with the results would be an understatement.

The past two months have probably been the toughest for me so far and, at times, the mountain in front of me has seemed insurmountable but, after today’s good news, I am putting on my big girl panties again and  gearing up to start the next round of chemo on Sunday “fugly” side-effects and all.

As long as the chemo is working, I don’t mind swimming against the tide for a little while longer.

Onwards and upwards x

Metastatic Breast Cancer Awareness Day

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Today, October 13th is Metastatic Breast Cancer Awareness Day.

Following my diagnosis with Metastatic Breast Cancer (MBC) in July, I’ve spent quite a bit of time online looking for more for information about MBC and, also, for support groups for those living with MBC.

To my surprise, I found that there was a common thread running through most websites and forums I came across. None of them seem to like October (Breast Cancer Awareness Month) very much. Some forums and groups have even gone so far as to ban any posts about “Pinktober” on their sites. This is particularly true of sites which originate in the US.

There seems to be a lot of frustration within the MBC community around the fact that,  during October, the sole focus of most campaigns seems to be on breast cancer survivors, awareness regarding the early stages of breast cancer and the low death rate from breast cancer. There is very little or no focus on  women living with MBC, the fact that there has been very little decrease in the death rate for 20 years and, also, the fact that only a  tiny portion of the funds raised during October find their way to researchers who are trying to find a cure for MBC.

If I am completely honest, and as much as I hate to admit it, I have found “Pinktober” quite difficult this year. My feeling is that unless you are a breast cancer survivor, you don’t have a voice. For example, I responded to a number of requests for articles/photo shoots and makeovers but as soon as I mentioned the fact that I was not a survivor but had MBC, my offers to contribute were declined. Quite sad really.

So, as today is Metastatic Breast Cancer Awareness Day, I’ve taken the opportunity to upload some interesting facts about MBC:

  • Metastatic Breast Cancer, also known as Stage IV breast cancer,  is cancer that has spread outside of the breast to other organs in the body. This is called metastasis. Breast cancer that spreads to another organ, such as bones, lung, or liver, is still breast cancer. It does not become bone cancer or liver cancer or lung cancer. The tumour cells still look and act like breast cancer and are treated as breast cancer.
  • There is no cure for MBC. The main difference between early stage breast cancer and MBC is that MBC is treatable but no longer curable. Treatment is lifelong and focuses on preventing the further spread of the disease and managing the symptoms, the goal is for patients to live a good quality of life for as long as possible.
  • Breast cancer confined to the breast doesn’t kill. MBC does as it has spread beyond the breast to other organs. Approximately 40,000 women and men die from MBC in the US each year. This number has remained essentially unchanged over the last 20 years.
  • MBC is monitored by periodic imaging tests (CT, PET or bone scans or MRIs) blood test measuring tumour markers and assessments of how the patient is feeling. Scans are normally done every three months but, if the metastases remain stable or shrink, scans may be done less frequently (e.g. every six months).
  • MBC is often an invisible illness. You can’t tell how sick we are just by looking at us. Some of us are bald, but most are not. Some of us show obvious signs of treatment, but many of us have hidden scars and severe side effects you cannot see. We may go to great lengths to hide or minimize how bad we feel or how serious our illness is.
  • Anyone can get MBC and no one brings MBC on themselves. Anyone who has had an earlier stage of breast cancer can experience a metastatic recurrent and some women are diagnosed with MBC on their initial diagnosis.
  • Everyone should care about MBC. Early detection doesn’t always guarantee a lifetime cure. Even with aggressive treatment, 30% of early stage breast cancers eventually metastasize.

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For those of you wondering about the MBC ribbon, here is a brief description of what each colour signifies. The ribbon was designed to highlight the uniqueness of the disease and show its commonality with other stage 4 cancers. The base ribbon of green and teal  represent metastasis. Green represents the triumph of spring over winter, life over death, and symbolizes renewal, hope, and immortality while teal symbolizes healing and spirituality. The thin pink ribbon overlay signifies that the metastatic cancer originated in the breast.

Hope you all found these facts useful and that they gave you a little more insight into what Metastatic Breast Cancer is all about.

Much love xxx

overwhelmed …

… is the perfect word to sum up the past two weeks!!

There just seems to have been so much to deal with …

“scanxiety”;  new evidence of disease; a fractured rib and the news that my right hip and femur could be at risk of doing the same; a stay in hospital;  a completely new chemotherapy regime; radiotherapy;  immobility; enough controlled medication to start a small business and the frustration of having the approval of a very expensive (AED 35k) genomic profiling test, which will indicate which drugs will be most effective in treating my cancer, declined by my health insurance …

that sometimes I have felt like I am barely treading water.

But, the thing that has, once again, overwhelmed me the most, is the love and support I receive on a daily basis …

the messages, phone calls and visits from friends and family; the awesome PINKLadies who are always there for me; my employer who has been so understanding throughout; the fantastic oncology team at City Hospital who take such good care of me; and last, but by no means least, my amazing family who have had to juggle everything they usually do with everything I usually do to make sure that there is food in the fridge, the laundry is done, and I am where I need to be and have everything I need …

that, rather than barely treading water, to quote one very cute fish called Dory, I’ll “keep on swimming”.

So thank you xx

 

Back on the rollercoaster …

SO, after not having made a post for a while, I’m afraid that this is going to be another one of “those” posts …

Last week, after completing two cycles of chemotherapy, I had a PET CT scan to check how the cancer was reacting to the treatment. Unfortunately, the results were not what we were hoping for!!

It seems that the beast is proving to be even more difficult to tame than we thought and has now set up home in several new locations in my body. These include metastases on my thyroid, a rib, my right hip and the top of my right femur.

Luckily, the bone lesions are fairly small but my rib has already fractured which is a sign that my bones are quite weak. I’ve been in hospital since Monday as a precaution while the doctors decide what to do to protect my hip and femur. The orthopod has decided that no surgical intervention to strengthen the bone is needed yet which is a relief and, for now, they will treat the lesions with five fractions of radiotherapy. This will start on Sunday and I will have one fraction a day for five days.

I am also going to be given an injection of a drug called Xgeva every six weeks which will help strengthen my bones. This will continue indefinitely.

Most importantly, is a change in the chemo regime. Today, we are starting a new regime made up of two drugs. The first, Cisplatin, is a platinum based chemotherapy (of the same family as mustard gas!!!) and is given once a week for two weeks. The second, also a chemotherapy, is a drug called 5FU (5 Fluorouracil) which is administered continuously for 14 days. 5FU is also known as a “suicide inhibitor” as it literally causes the cancer cells to commit suicide, I kind of like that idea!! What I am not too sure about is the thought of having to carry my “suicide inhibitor” around with me for 14 days … never thought I be making best friends with my chemotherapy!!

Each 14 day cycle is followed by a week’s break and I will have between 6 and 8 cycles with another PET CT after the third cycle to check the response.

I have been warned by Dr S. that these drugs are more toxic than the last chemotherapy and that I should expect the side effects to be worse than those I have experienced before. I am hooked up at the moment and my lovely chemo nurse is just about to start the Cisplatin so I will keep you all updated … right down to the last gruesome detail!!

What I will say is that if I don’t develop some kind of X-Men-like super powers after all these drugs and radiotherapy I will be seriously disappointed.

 

 

it’s the little things …

We’ve been lucky enough to have a super long weekend for Eid Al Adha this year and, on Monday, I had the day all to myself as Steve and the kids headed over to Fujairah to do some fishing.

I could have stayed at home to tackle the monster pile of laundry that keeps on jumping out at me from under my bathroom basin but, instead, I headed off to my happy place, the beach, for the first time in months.

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It’s still a bit too hot to spend too much time in the sun but the sea was flat and crystal clear and perfect for wallowing … something I do really well!! I think I spent about an hour just floating about enjoying the water and the feel of the sun on my skin.

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“There is nowhere else I would rather be, nothing else I would rather be doing. I am at the beach looking west with the continent behind me as the sun tracks down to the sea. I have my bearings.” Tim Winton (Land’s Edge)

After my swim, I indulged a little more by visiting one of my favourite spots, Cafe Rider, for some brekkie and a coffee … found a comfy chair in a quiet corner and just relaxed.

As I continue on this journey, I am slowly starting to realise that I need to slow down, and take time for me, do the things that make me happy and just be. It doesn’t take much to make me happy … the sea, sand between my toes and the sun on my shoulders and a good coffee … absolute bliss!!

3 days of “normal-ish” …

A new text popped up on my phone a short while ago … it was a not so welcome update from the hospital advising that the paperwork had been submitted to the health insurance company for the approval of my next chemo session. I say “not so welcome” because I am still recovering from the last session and don’t really want reminding that the next one is only two days away!!

My new weekly routine goes something like this … chemo on a Wednesday, an okay Thursday (thanks to all the premeds), man down on Friday, emerging from the chemo fog on Saturday and exhausted on Sunday. On Monday you wake up feeling a bit stronger, on Tuesday you are definitely almost human and may even manage a full day in the office and then BAM, its Wednesday again.

No matter  how many assurances the oncologist gives you the side-effects  of chemo are horrible and it would appear that, in the space of a year, I have very quickly forgotten how rotten I actually felt. For the last four days, I have experienced nausea, bone pain, fatigue, cold sweats and, my personal favourite, diarrhoea. Probably too much information but hey, sharing is caring as far as I am concerned.

Whilst these side-effects are unpleasant, with the exception of fatigue, they generally subside after a few days and a sense of normalcy begins to return, even if only for two or three days. There are however those side-effects that linger for the entire duration of the chemo and then some. The worst of these for me is probably the strange effect that chemo has on some of your senses.

Chemo dulls your tastebuds and leaves you with a permanent metallic taste in your mouth,  it also heightens your sense of smell which can make things quite challenging. Your favourite things either taste completely different (usually in a bad way) or the smell makes you feel ill … my morning latte is now a thing of the past and I can’t really come within 50 paces of a papaya or a smoked salmon, or the two gentleman in the lift morning who smelt so strongly of curry leaves and spices (I kid you not) that I had to escape the lift for some fresh air half way up … it was either that or throw up in my handbag!!

Eating definitely becomes a challenge and for somebody like me who loves their food, it is simply no fun at all. To add insult to injury, there is very little reward for having to pass on all the food you love as, thanks to all the premeds and steroids, you have no chance of emerging from treatment to  with a svelte new figure, in fact, it would appear to be completely the opposite!!!

Chemo is so the gift that keeps on giving but, despite all of the above, I am truly grateful that I have bot the access to and the means to afford the best treatment that money can buy thereby giving myself the best change of beating this.

Whether I still feel the same when I start losing my hair remains to be seen …

Reality strikes …

The last two days have been spent preparing for my first chemo session tomorrow. This comes only 7 weeks to the day after finishing the treatment for my initial diagnosis.

Yesterday, I saw my oncologist who confirmed which delightful chemo cocktail she had concocted for me; I filled numerous vials of blood to check my tumour marker, white blood count and liver function; had a chest x-ray to provide a baseline for treatment; and had an echocardiogram to check whether my heart is healthy enough to withstand the treatments prescribed.

Today, I saw my wonderful breast surgeon for a breast exam of my healthy breast and the breast radiologist who mapped all of the infected lymph nodes that can be seen on an ultrasound so that, in a couple of weeks time, she can look at them again to see if the chemo is working.

You’d think that after having been there and done all of that numerous times before I’d be cool, calm and collected.

Not a chance!!

The first time round I had absolutely no idea what to expect and just rolled with the punches. This time round, things are a little different as I know exactly what’s coming and I think the reality of the whole situation has just hit home. I will admit to having had a few wobblies over the past two days.

For those of you who are interested, my treatment protocol is going to consist three cycles of two drugs, Abraxane (chemotherapy)  and a targeted therapy drug called Avastin. Each cycle is four weeks. I have the Abraxane once a week for three weeks and the Avastin on the first and third week of each cycle. I have the fourth week is a week off. Whoop, whoop!! After three cycles I will have another PET-CT scan and if the drugs are working, we will continue for another five cycles. If the drugs are not being effective, the oncologist will change them and we’ll start again.

Side effects include nausea, fatigue, palpitations, neuropathy, mouth ulcers and blood noses to name but a few and, just because chemo is the gift that keeps on giving, I am likely lose my hair, eyelashes and eyebrows again and quite possibly my toenails (which have only just grown back). Such a joyful thought!!

But, despite all the side effects, I know that this is what I have to do to beat this beast and, tomorrow, I will put on my big girls panties, head off to City Hospital and have my first chemo cocktail. I also know that after tomorrow, things will likely be a little easier and I will then adopt the same one-day-at-a-time approach that got me through the last treatment.

See you all on the other side xx