The bit I didn’t want to document

My blogging world seems to be very surreal at the moment.  Each time I write a new post it feels like I’m telling the story of some poor woman with an awful health condition. I still can’t believe that I am writing the truth about myself as it just doesn’t seem real. Especially the next part. How can I document this?

Its been 67 days since I was told i had secondary breast cancer. On this 67th day I was told my disease was terminal and I would have less than 12 months to live. All I keep hearing my consultant saying is we need to get palliative care involved in your care, you can’t keep coming back through A&E with symptoms of your disease as it’s not fair on you, Palliative care can get involved now. (As I am typing right now I am waiting for my GP to visit me at home to discuss the palliative care arrangements and talk through what’s going to happen next. ) Palliative care though? Geez!! This shit is getting real 😔

Can you see what I mean now? How can this be actually real? I mean I am 31 years old, I’ve got my two gorgeous kiddies and a husband that adores me. We should be paying our mortgage off, going on expensive holidays, reaping the rewards in the careers we’ve both built up. But instead we are talking about palliative care, death and end of life.

So symptom wise I’m pretty knackered at the minute. Sitting down still on a chair I’m fine, you wouldn’t think nothing was wrong with me, but walking 20 yards I feel like my body is giving up. I have Lymphangtis where the cancer has spread into my lymph nodes in my lung. I also have this plereul effusion where the fluid is sitting in my lung lining. I have to have chest percussion to aid me clearing my lungs and the shortness of breath I suffer with is awful. I’ve kind of come to my senses that I will now be using a chair to get about, unless miraculously these steroids and the new chemo il be starting in a few weeks clear this chest up and all the congestion, otherwise I don’t see no other way forward. Once the embarrassment of using the chair for the first time is over with, il be ok. It’s a bit like when you loose your hair for the first time and you step outside, a few looks in and you just get used to it.

So the plan for my treatment was actually up to me. My consultant wasn’t sure wether this new chemo will work, but I Have to give it a go, we have also discussed immunotherapy treatment abroad in a German clinic which my lovely community is raising funds for me. I will know more on this front when I go back in two weeks.

So as you can imagine, our whole world has come crashing down. The pain we are all feeling is immense. I don’t know how I will cope with this bitter end, I just know I cannot die. Every will in my body is giving this the best shot and if all else fails at least I know I tried.

For now, we are packing up house and moving in with my parents. They are building a granny annexe on the side for them and we can all be under the same roof with good quality support. My kiddies will grow up in a better area, bigger house and it’s still right by their school.

Im going to love you and leave you now, I will update all my treatment plans/ side effects as they come. Sorry this one was such a depressing post 😏

Enjoy this crisp Autumnal day 🙂

Much love

Michelle xx

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Life gets a little more complicated

I am usually an upbeat person, blogging away, looking at the positives in life and generally trying to be happy. But these last 6 weeks have been a dodgy old ride and it’s a stark reminder of what is to come.

So I started the chemo tablets 6 weeks ago, feeling very well and still planning on going back to work after the Christmas break. Very soon after starting the chemo I developed this nasty barking cough. The first couple of weeks I was prescribed 2 lots of antibiotics but still it lingered. I suffered with shortness of breath (SOB) throughout the first weeks and doing simple tasks like walking up the stairs or just putting some washing away literally took my breath away. I felt and still feel like my 31 year old body is rapidly changing into a body that I cannot adapt too. As you know I’ve got two young kids, so this shortness of breath and generally feeling like crap has not been taken well in my books.

So fast forward a few weeks,cough is still lingering,  SOB is still the same and with my heart rate in the 120’s, they decided to check to see if I had a blood clot in my Pulmonary Atrtey. This is done using a Ct scan, the radiologist is specifically looking for a blood clot but because of the nature of the scan they can pick up other things. Which they bloody well did!

No blood clot for me, instead progression of my disease. This was 10 days ago. I was told then that nothing can help with my SOB because it is disease related and the hope is that the chemo would help reduced the disease and then help my breathing get back to normal. So you can imagine at this point over a month of suffering, coughing my heart up everyday and not being able to breath I’m pretty damn fed up.

So the story continues and this time another hospital visit because of an intense pain in my right rib cage area and over my liver. I’ve been given really strong painkillers that just have not been touching it, the pain was worrying me and I needed to get this checked over. The doctor on the ward told me that the results of my CT scan 10’days ago did actually show a small pleural effusion (This is fluid around the lining of the lung) and it showed lymphangitis (enlarged/inflamed lymph system in lung) and so I was started on steroids and had a repeat chest X-ray. This showed the pleural effusion worsening with it now on my left lung and taken up residence in a third of my right lung. My oxygen saturation levels haven’t been too great neither. But the risk outweighs the benefit At the moment so they won’t drain it yet!

So now you’ve listened to me go on about the shittest time I’ve had so far on this crappy cancer journey I would just like to say thank you, the support you’ve all shown me over this last 10 months has been phenomenal. Our lives are changing ten fold at the moment. It’s all very scary and the future is so bleak and unknown.

If you take nothing else from this blog, just please have a good weekend. Give your loved ones a bigger kiss, a tighter hug and appreciate LIFE as you know it.

much love

Michelle. Xx

Secondary breast cancer treatment -Capecitabine

I thought the world of blogging for me #tagging my chemo journey in the spring and summer would be over.  I even organised a barbecue to celebrate with my family and friends about kicking cancers butt, but as you know that wasn’t to be.

Getting back on that ‘horse’ once I had already got off was very difficult. I felt terrible having chemotherapy intravenously in the summer, I felt like I was lost as a person and my role of a mother and wife was diminished. I put on a lot of weight, lost 10 days out of my life every 3 weeks and felt like an 80 year old women trying to carry on as normal. I was told it would take a good 12-18 months to get back to normal after this treatment, so I mentally circled that date in my mind of normality resuming in our lives.

So when I got told I needed more chemo, my world shattered. My hair has started to grow back quite nicely and although I’m still overweight I have lost that steroid look from my face, I was trying to get my fitness back together and so this news was a massive blow. I imagined going back into the hospital having another picc line inserted, ordering another wig and preparing my bedroom for a sick room again.

But, thankfully, the chemotherapy I am taking is called Capecitabine. They are tablets! Hooray! No more picc lines. Hair loss is unlikely! And side effects are much more minimal than IV chemo.

I take this chemo in 3 weekly cycles. I take 2.3grams twice a day for 2 weeks, then I have a weeks Break.

Touch wood, so far I have had no side effects at all. I’ve had a very bad cough mind you and started on antibiotics so some days I’ve felt wiped out that way, but other than that it’s been ok.

I believe you can have as many cycles as you need, some ladies have other chemo on the side too, but my plan is just the tabs at the moment.

Much love

Michelle  x

Making Memories

I never really thought about making memories until the last few years, not because of all this saga going on at the moment or anything else that’s happened around us, but just because my children were growing up and I wasn’t consumed in nappy changing, making bottles and potty training. Instead my little girl Macey (who is 4 years older than Freddie) was blossoming into this beautiful young child and Freddie was transitioning from toddler to small boy. Macey would often ask John and I about our childhoods, mine was like a fairytale from start to finish and I always strive to give my children the childhood I had. I would tell them stories of our Sunday routine, driving to Cosham to collect my nan and grandad, roast chicken or beef always cooking in the oven, my dad and Grandad taking us to the local working men’s club, where we would have a bottle of coke to share between me, my sister and two brothers. We would always do a raffle and have a packet of poppets to eat on the way home. There I learned how to play pool and my inner Tom boy thrived in those years. We would walk home and would feast on a big fat roast, Grandad would tell us kids old war stories, whilst him and my dad would have a few whiskeys. By about 5pm they would be asleep on the sofa and grandad glasses would always be crooked on his face! Because dinner was usually served lunchtime ish we would have a sandwich tea, usually something like cheese and cucumber sandwiches and a half moon lemon marble cake for afters. Being a child of the 80’s and 90’s, on special occasions we would always have the odd shandy too. John would tell Macey and Freddie about his long summers at his grandparents who lived by the sea and how he was just dropped in the ‘drink’ to learn how to swim. For John the smell of the sea will always bring them memories flooding back and for me whenever I smell a roast dinner cooking, it always brings back a homely, safe feeling and funny enough the smell of cigarette smoke and mints combined always reminds me of my mum, even though I don’t smoke and neither does she now, that always reminds me of her and it brings a slight comfort.

So thinking about memories we both have as children and raising our children through them toddler years has been a story to tell. But what about making memories for now and the future? Do you just do? Do you go out of your way to make specific memories? Social media has played a massive role in memories from the last 8 years, timehop is a brilliant app, looking back at what you did 1,2,5 years ago. But some of them memories are going to be bad, well for us anyway – particulary this last year.

So it’s got me thinking. None of us know when our number is up. Should  we be making memories for our children and families now? Regardless of our prognosis.

Ive purchased a book called “Dear mum, from you to me”. It’s a journal that’s designed for any mum to complete for their children to look back on in years to come. The pages are clean and easy to understand. One question maybe, “what was I like as a baby”? Something a child won’t ask now, but maybe when they have children they may want to know, so you can write a whole page of what your child was like as a baby. There is also other questions such as “give me some interesting facts about our family”. It will take some time to complete, but once completed its invaluable.

Ive got memory boxes for both my children from when they were babies, it has things like their first blanket, first outfit, hospital wristbands and greetings cards. This has also got me wondering wether I should start a memory box for each child from me. Who knows how long I have left to live, I could live for the next 15 years and then there could be this miracle cure, or I could get hit by a bus tomorrow (sorry I know that sounds dramatic, but just using opposite ends of the scale) So with this in mind I have decided to buy a blue and pink box and start gathering memories. Items on my list to add are photographs of us all together, I’ve become very lazy at printing out photographs and just tend to store them on the hardrive or Facebook. Other items could be like a special event we have attended, putting the stub of the ticket inside the box. Clearly I realise that most memories do live in our heads, but with Freddie only being 5 I want him to remember as much as he can without it taking any extra effort from him.

So in a nutshell, memories can take us right back, sometimes memories pop up that I didn’t  even realise were stored in my brain, mostly when I smell a particular scent, or hear some music that reminds me of that time.

Should we just let memories be and let them happen naturally? Or do you thinking making and documenting memories is a morbid thing? Or just something we all should do? I believe it is something we all should do, regardless of our circumstances. I’d love to hear your thoughts xx

Stuck in Limbo

Yep them cancer cells are still there, multiplying like maggots in my lung nodes. My axilla nodes are sitting on the back burner for now, who needs armpits anyway?  Any slight cough, twinge, breathlessness all reminds me that this is potentially growing.

I met with my oncologist last Wednesday. She spoke to me, hubby and mum about these chemotherapy tablets called Capetibine . The side effects are very minimal compared to IV chemo and you get to keep your hair too!  I asked about any clinical trials going on in the area, one particular one I wanted to try was Immunotherapy. I don’t like speaking medical terminology to family and friends (that sounds so wrong, but I keep it on a need to know basis otherwise it confuses the hell out of them, nursey talk to normal people is confusing!!) so this trial I kept tucked away, so it was a shock to them when oncologist mentioned it that I got quite excited!

Unfortunately as with all clinical trials there is a strict eligibility criteria you have to meet, we think my history and diagnosis ticks all these boxes. A referral has been made to a specialist cancer hospital 60 miles away for me to possibly start this clinical trial. There are two options, one trial is called Keynote and the other is called Impassion, both use an immunotherapy agent called Pembrolizumab. Like all things that need referring, it takes time. I’ve already waited nearly 3 weeks since the secondary diagnosis to even be referred, mainly because I didn’t see my oncologist until nearly two weeks after the stage 4 diagnosis.

So yes, I feel a bit in limbo. I feel quite worried that I haven’t started any treatment yet and this cancer is festering away at my body. I’ve been told not to worry as it’s not attached to vital organs that’s pressing on systems that can affect my everyday living. To be honest, that’s really hard to digest and is quite hard not to worry when I look at my kids faces everyday and feel the guilt and dread that goes alongside it.

Part of me wants to throw the towel in and just say start me on chemo tablets now! But if I do I won’t be eligible for the trial, because part of the criteria is that you must have had only the first line of treatment only, starting chemo tablets is classed as a second line of treatment, so it feels like I cant win either way. I must hold on though a few more days to see if I’m eligible as this could be a groundbreaking new treatment for breast cancer. I know right now my cancer is incurable, so to have that tiny bit of hope that something is out there, makes me want it even more.

 

 

Someone like me

“please give a warm welcome to Jenny Yin, im sorry you have to be here Jenny but the girls will take great care of you” I click on her bold name, it takes me straight to her Facebook profile, yep, she’s about my age. Shit she’s got 3 kiddies too, looks like she’s single, happy profile pic though. A few hours later another notification pops up on my profile, “please welcome Sarah Husselfield, I’m sorry your eligible to be here, but the girls will take great care of you” I click on this ladies name too, she looks a bit older than me but not much, her profile is more private. I can’t see much else than her profile picture dressed in pink, doing some sort of muddy charity event. (names have been changed for confidentiality)

This happens 2 or 3 times a day, some days not at all, but this is admin of a secret Facebook group for ladies living with secondary and inoperable Breast cancer under the age of 45. Every time a new member joins it pops up in my notifications. It’s bloody scary, it really is. You look at their profile pics and think of their poor families, like mine, going through this ordeal. Then you realise, I was welcomed in this group in the same way. I am that poor person too. They are all someone like me.

So its happening. I cant quite turn off the notifications to the group when someone new posts as im a novice at the moment when it comes to secondary cancer, but equally my heart sinks when i see someone new joining the group. We have all got this connection, maybe its age? maybe its because some of us our mums to a young family? i dont know, but they just get it.

I originally started this blog to inspire other ladies going through breast cancer to show them that the journey isn’t all that grim. To be the mummy figure of future care and show people it will be alright. I was in two minds wether to even admit that i had secondary cancer on my blog as i didn’t want to scare people, worry them and make them feel that their journey may follow suit. Of course this isn’t the case, i know that now. I just wish we had a magic pill to make this all better, to show the world that this can be beaten. Hopefully in the future it can.

I dread to think that there is someone like me out there. But then again them ‘someone like me’s’ are my absolute support network, they just get it.

For those of you that have been following my Journey would know that I have been tested for Secondary cancer. I never knew about secondary cancer really before – even though I was a nurse. I’ve heard of metastases, which is pretty much the same thing, but never working in oncology, never really understood the meaning as much as I should have. So whilst I sit here aged 31 – wishing I checked my breasts sooner and more regularly, it is with a heavy heart that our suspicions were right. Unfortunately my breast cancer has spread to my lungs. Luckily for me it’s not formed a tumour yet and is sitting happily in my nodes by my windpipe. The road ahead is not a pretty one and I will never be cured from this terrible disease 😢😢 For now the doctors will try and keep it at bay by having more chemotherapy. Hopefully for many more years yet to come.
Some would say my Journey is too ‘open’ on social media. However, if I can get one more lady to check her boobs and save more lives, then my job is done.
For now we are burying this crap and going to try and enjoy a weekend away. Thank you for all your support 💛💛💛image.jpg