Gratitude In Cancer

Almost 2 weeks ago, I posted about how difficult I had found the previous couple of months. No matter how positive and determined I tried to be in my resolve to tackle this cancer, even my strong spirit came close to breaking.

Right now, it’s hard for me to believe that this was so recent. On 29th April, I finally began a new treatment, a targeted therapy called Pemigatinib, and the effect on me and the debilitating symptoms that had consumed me no matter how I tried to rise above it all, was almost immediate.

But, although I am truly grateful to finally be feeling more myself again,that isn’t the reason for this post…..that’s just an update and I will post soon about this treatment and how i’m finding it as time goes on.

Photo by Nathan Dumlao at Unsplash

As I have mentioned before, I decided early on in this “fight” that I didn’t just want to rely on standard treatment and spent a lot of time researching the benefits of nutrition, exercise, supplements, stress reduction, repurposed drugs as well as alternative therapies found to be beneficial to cancer patients, such as IV-C infusions, oxygen therapy and hyperthermia treatments.

Although the nutrition, exercise and stress reduction methods such as meditation were relatively easy to implement into life, the many supplements recommended, repurposed drugs and alternative therapies are expensive and unfortunately, the bills still need paying, so these were just not an option for me. I made the decision to focus solely on the nutrition, exercise, supplements and meditation.

And this was fine to start with. I was lucky to tolerate the chemotherapy well with minimum side effects and showing a good response to treatment with scans showing shrinkage in the tumours and because of that I was able to eat well and get out for my much loved walks.

A lot of my friends and family were aware of my wish to tackle cancer from all angles and soon after my diagnosis, a very dear friend, Emma, suggested setting up a Go Fund Me page in order to get me access to these alternative therapies. I had been mortified at the time, embarrassed that I would need to rely on the generosity of other people for this to be an option and so refused whenever the subject was broached.

However, when my treatment ended and my health began to decline rapidly, the fear crept in and when my friend asked me to consider this again, I agreed for her to set one up.

I don’t know what I did expect but it certainly wasn’t what occurred and in a very short space of time. People began to donate and share my story so quickly, we were both left completely gobsmacked. The “target” set was reached within 24 hours and has since surpassed this. I can’t tell you how much it means to me that thanks to peoples kindness, love and generosity, I am able to access these additional treatments and give me the best chance of controlling the cancer and buying as much time as possible to spend with my children, friends and family.

But, what has completely blown me away has been the messages of support from people, even complete strangers. I have spent much of the time since, a blubbering and emotional wreck as messages continued to pour in offering support, encouragement and love. It’s given me the opportunity to connect with old school friends, family members and new people, all wanting to help and it has been completely overwhelming.

It’s been a tough year for everyone, many losing loved ones or unable to visit sick family members due to Covid restrictions. Many have lost their jobs and businesses have either folded or have left owners in considerable debt.

And yet……STILL people want to help.

And HAVE helped.

“Do your little bit of good where you are; it’s those little bits of good put together that overwhelm the world” – Desmond Tutu

After a period of extreme pain, fear and vulnerbility, this support has reignited the fire in my belly and resolve to invest everything I have into my healing and to live each day.

I cannot convey just how truly grateful for the compassion and kindness shown towards me, not only recently but from the start of this chapter in my life.

I hope you or your loved one has support and love around them.

I am always here for anyone struggling, needing or wanting someone to talk to.

Much love and strength,

Megan x

“Live” with cancer

As I wrote in the previous post, it’s been a difficult couple of weeks, full of fear and pain. During this time, I thought the fear of a quick deterioration would kill all hope and break my spirit.

It’s this part of cancer that sucks for me.

Thankfully, the pain is easing somewhat and I’ve finally had a couple of decent night’s sleep.

During last night’s bath, I took some time to reflect on the last 8 months. So many days get lost or roll from one to the next when you are fighting cancer and every now and then, I like to take time out to think about how far I’ve come, what’s worked, what hasn’t and what lays ahead of me.

One thing that struck me was how, from the start of this, I have always been determined to live. Like most people, I have a long list of things I would like to see before I depart this beautiful planet of ours. Watching my children grow, flourish, get married, grandchildren and to be there for them when life’s obstacles get in the way. There are so many places I want to visit and goals I want to achieve. Goals that seemed so unobtainable BC (before cancer) but now, with a high level of gratitude for being alive and a new found confidence in myself, completely doable.

But, I couldn’t help feeling I was stuck in no man’s land.

In my planning for the future, for when I “beat” cancer, I forgot something….

I’m living now

What if I do succumb to this illness? Will all of my time since diagnosis be spent planning for a future I may not see?

Today….right now whilst typing this, I am alive and feeling relatively well.

Tomorrow, I will wake up to a brand new day, 24 hours to “do” things. In the pain, the fear, the anger and the sadness post diagnosis, it’s sometimes hard to appreciate this when we are told we are facing a death sentence in x number of weeks or months as the medics tell us. However determined we are to beat this, often the fear gets in the way of enjoying being alive right now.

Of course, for those who are in a great deal of pain, or who have made peace with their predicted fate, then getting out living may either not be physically possible or not something they desire. And this is fine. Everyone is entitled to deal with and feel how they wish.

So, although Covid restrictions are (still) putting a spanner in the works in terms of places to visit and loved ones to see, I plan to live for today.

However small, I will DO something every single day that makes me happy. For those days where I’m consumed with fear, I will watch something that makes me laugh. On days where I feel invincible, I will head on out and walk in some of the breath-taking countryside Yorkshire provides for us.

“What day is it?” asked Pooh.
“It’s today,” squeaked Piglet.
“My favorite day,” said Pooh.”
― A.A. Milne

Love and strength,

Megs x

Set Back

Hey everyone.

*Warning…..not a positive post I’m afraid, but it’s been a difficult couple of weeks.

Last Monday, I received the news that my CA19-9 tumour marker has shot up to 1262 and I have only now been able to write about it as my mind has been all over the place. This is because this number is only 30 away from my initial reading on diagnosis back in August of last year (2020)

I had a small rise back in January but other than that, my tumour marker has consistently reduced since diagnosis, which was so encouraging. No wonder I was so shocked with this latest result.

What is a tumour marker?

Some types of cancer produce chemicals that can show up in the blood on a blood test. These chemicals are called tumour markers. These will have different names depending on where the cancer is.

CA19-9 (carbohydrate antigen 19-9) is associated with the following:

  • Bile Duct Cancer
  • Colon Cancer
  • Stomach Cancer
  • Pancreatic Cancer.

CA19-9 is used as a diagnositic tool in diagnosis and also used to monitor treatment. The normal range for CA19-9 is 0-37. Throughout treatment, these are used to give an indication of how successful chemo/radiation etc has been. If the munber reduces it could be that you have responded well to treatment and could show tumour shrinkage. A rise could mean that the tumour is growing or treatment is not successful. Sometimes, levels may stay the same and this could mean your disease is stable. (This is a positive even if a little dissappointing at the time)

Although I had expected to (but hoped not to) see a rise of some kind now that I’m on my 3 month break from chemotherapy, I definitely did not think there would be such a sharp rise. Throughout my journey, I have been keeping a record of both tumour markers and tumour size so that when I’m feeling defeated, I can refer back to it and remind myself how far I have come. You can see from the diagram below why I may be feeling slightly alarmed right now.

I had been assured that during my break from treatment, I would be “closely monitored” and should there be a deterioration in my condition, there were options available. With this reassurance, I had felt confident in the care I was/am receiving but unfortunately, I have not heard a thing.

Maybe it’s purely fear but I feel pretty let down right now. I’m not one to constantly phone with every ache and pain, far from it, but I made a couple of calls last week regarding the pain I am in……advice: “try some paracetamol.”

Nothing like being made to feel as though you’re making a fuss over nothing to lift the spirits!

After receiving the news regarding the sharp rise in tumour marker, I genuinely thought I would be getting a call pretty quickly to arrange options.

I haven’t

As a result, I am losing confidence in the team I was so happy to have overseeing my care.

Down times well and truly suck BUT I know better days are to come……

Scan Success

If you have just been diagnosed with cancer, chances are you will have already had a scan or a couple to confirm diagnosis.

Scans are used to detect and monitor cancer and are used periodically throughout your treatment.

You may be required to have any of the following scans:

  • Ultrasound (It was this scan that initially showed a shadow on my liver)
  • CT
  • MRI
  • PET

They are an essential tool in diagnosis as well as determining how effective treatment has been, whether that is medical (chemotherapy, radiotherapy, immunology etc) and/or if you have chosen to take a more natural approach using nutrition, supplements and treatments such as hyperthermia and IVC.

Last week, I received the results from my latest CT scan. The anxiety and fear waiting for these can be utterly crippling, regardless of how positive you may approach your cancer battle.

(Sc)anxiety IS A THING.

Maybe you’re awaiting scan results right now?

I have had a few now and honestly thought I would be able to manage my feelings in regards to the impending results. However, as time drew nearer, I began to feel (and act) irritable, my usual upbeat manner all but diminished as the fear of what I would hear consumed me.

Am I doing enough to support my healing?

Am I deluded in thinking I can beat such an aggressive cancer?

What if I have missed something?

These questions and a LOT more went through my mind in the days running up to that phone call. The self doubt and fear was overwhelming.

I’m fortunate to have a lot of emotional support and everyone assured me that the results would be great, that I am a warrior and have done so much to help myself but I just couldn’t believe it. It had been a month since my last chemotherapy cycle and even for me, who would prefer to take the natural path as treatment, i was worried that without it, there would be a huge growth, especially as my cancer is classed as “poorly differientiated” which means fast growing.

I was informed early on that the gemcitabine and cistplatin, which are standard, first line treatment for bile duct cancer, has limited success. Like all chemotherapy treatments, they cause damage to healthy cells as well as the cancerous ones and also the organs, sometimes to such an extent that the patient dies from organ failure rather than the cancer itself. For someone who also has the heart condition Hypertrophic Cardiomyopathy, the damage chemotherapy may cause does play on my mind. Chemotherapy floods your body with free radicals which in turn, obliterates your immune system. The problem with this is you need a healthy immune system to help your body repair itself so it can help fight cancer.

Because of all this, I couldn’t WAIT to finish chemotherapy at the time but waiting for these results, I knew that the fear of my scan results showing a growth in my main tumour or metastasis elsewhere in my body would see me desperate to start back on it as soon as possible.

Maybe it was the blood tests I had prior to my last chemo cycle that showed an increase in my CA19-9 that had induced this fear….I haven’t been back for more since.

Eventually, the phone rang and the Dr informed me the scan showed mixed results. I shook so violently that I had to hold the phone in both hands.

There were more “spots” on my lung although this could also be down to having Covid in December

(Update: After a follow up phone call from my oncologist, they no longer think this is the case as i already had spots on the lung before i tested positive for Covid. They will continue to monitor these nodules)

BUT

My main tumour had SHRUNK by 2.5cm!!

Oh, the relief!!!!

This means that my main tumour is now 8cm. Still huge but it’s an overall reduction of 5.5cm in a matter of months.

Also, for the first time, there was a significant reduction in the enlarged lymph nodes.

How will I feel after the next scan? I’d like to think I will feel upbeat and positive but something tells me I will probably go through the same cycle of emotions as that’s exactly how it goes in this game called cancer.

And that’s fine. It’s normal.

Ebbs and flows.

How does waiting for scan results effect you?

Disclaimer. The content on this website is not intended for medical purposes. I have no medical training or background and posts are purely my experiences since recieving my cancer diagnosis. Information shared on this website is based on the research i have carried out. Always consult with a medical practitioner or other qualified health provider.

My “Chemo Holiday”

So, last week, I finally completed my first block of chemotherapy and was all set to begin my “chemo holiday”. This 3 month period is to give my body a rest from treatment and to recover. I had planned to post on the evening of my final chemotherapy cycle, full of excitement and relief, as it was something I had looked forward to since Christmas. The gemcitabine and cisplatin I receive, which is standard treatment for Cholangiocarcinoma, was beginning to take its toll and I longed to have time to heal my body in order to feel strong and healthy again.

I was lucky to tolerate chemotherapy pretty well. My main issue was a reaction to the steroids given before the chemo itself, resulting in puffy eyes and face. Other than that, some fatigue was as bad as it got, which given the amount of toxicity pumped into my body each time, I count myself very lucky.

*Note: If you experience a reaction to the steroids, you can ask them to administer it at a slower rate. Nurses gave me 8ml over 8 minutes (sometimes 10) and that seemed to lessen the effects.

The last couple of chemotherapy sessions were slightly harder going than before but as I was recovering from Covid-19 that’s hardly surprising.

So, when the nurse removed the last cannula I’d thankfully see for a while (my veins have all but given up!) I genuinely thought I would hop, skip and jump out of hospital. THIS was the day I had been waiting for. 

Feeling The Fear

But, over the next few days, I began to feel fearful of what could potentially happen during these 3 months.

What if my main tumour increases in size?

What if it spreads further than my liver and left lung?

Having made so lifestyle changes in order to support my treatment,improve my overall health and of course, beat cancer, the realisation that should there be a progression in my cancer during the next few months, I would probably have to accept that my chances of a longer life really are dependent on chemotherapy. This terrified me (and still does) as the damage chemotherapy causes could lead to organ failure and my immune system becoming so beaten down that i am left weak and at risk of all kinds of infections.

I have put so much time, effort, money and hope into the alternative and natural approach to treatment that the fear it may all be for nothing became overwhelming.

It took several days of reminding myself why I decided to tackle my cancer from all angles and thankfully, the fear began to subside and my faith restored. I realised it won’t all be for nothing as i have, 6 months on from my diagnosis, felt healthier than ever before, especially in comparison to the last 10+ years.

This, as i am learning, is yet another example of the ebbs and flows of this journey. Cancer does this to you. One minute you think you’ve got a grip on it all and next, you’re crippled with fear.

*Edit…..Two weeks on from this post and I’m feeling well and more focused than ever to use my “holiday” as an opportunity to heal. Not only to recover from the effects and damage undoubtedly caused by the chemotherapy and not only in an effort to deplete my body of cancer cells currently invading it, but to heal emotionally, from past traumas and the stress a cancer diagnosis has on you.

I see myself stronger, both physically and mentally. I see myself well.  

I can now, finally, look forward to making plans (once Covid restrictions are lifted)

……now, would somebody please pass me the sun cream?

I would love to hear your experiences during a break from treatment.

Are you or someone you know on a break from treatment?

What impact did your treatment break have on you?

The Power of Social Media for Support

When i was first diagnosed, i really didn’t know where to turn for support. All i had was a leaflet containing the phone number for Mcmillan (who are great, i might add). Due to the dire prognosis of Cholangiocarcinoma and the depressing “facts” and statistics i had come across, i felt even more alone and scared. What i was desperate to find, were stories and journeys of those who were facing the same diagnosis as well as a search for survivors (they are out there!) and how they had got to the ultimate goal.

I used Google to search for blogs but only came across one and unfortunately it was old and limited in content. So i decided social media was probably my best bet. For someone who has used Facebook for many years, i was surprised at how clueless i was when looking for support.

Eventually, i logged onto Instagram and in the search button, tentativley typed “Bile Duct Cancer” and “Cholagiocarcinoma”. Under “tags” i found lots of random photos from various people and organisations.

*Note: You will need to set up an account to view content on here.

As i was scrolling through some of the photos and posts, i saw one of a young lady with a big smile on her face and had to find out more about her. Like many cancer patients, she had used social media to document her journey, the ups and the downs but i was blown away at her positive attitude and the pure joy she found in everyday life. After commenting on one of her photos, explaining i had not long received my diagnosis and how happy i was to read how she was winning her battle with the disease, we began messaging and i cannot tell you the effect she had on me as someone further down the line.

She reached out to me, told me her full story and advised me on all manner of things, some of which hadn’t even occured to me right then. Through her initial support and guidance, i was able to research cancer (and boy did i do the research….it became a full time job!) and look into all areas of helping myself.

Through her support, i learnt that this was so much more than simply having chemotherapy or surgery. I had to do my part too and that was through nutrition, exercise, meditation and more….posts to come for all of these!

I had always been determined to beat this and was never going to just accept what i was told by doctors and she saw this determination (something she clearly by the bucketload) and her messages could not have been more encouraging or supportive, giving me the confidence to believe in myself, my abilities and my strength.

I have never met her (she is over the other side of the pond) but i absolutely consider her a dear friend…..and what’s more…..she has BEATEN cancer!!

Now, this is where Facebook really did help me. No longer using it to post photos of the kids or holidays, i found it an invaluable tool for connecting with others who were going through the same. Of course, there are some heartbreaking stories of loved ones who have passed and i never gets any easier to read.

There are though, some amazing groups you can join. I have listed these below. Some are purely for those diagnosed with Cholangiocarcinoma but i’ve also included groups that i have found along my journey so far as a result of my constant research into what i can do to help myself. These include a lot in regards to how nutrition can help and why as well as inspirational pages from people who have beaten their own cancer.

Nearly all of these have been by healing their bodies the natural way and there are some incredible stories on these which will give you so much hope and you will be amazed at what our bodies are capable of once we start truly looking after them.

  • Chris Beat Cancer
  • Cholangiocarcinoma Support Group
  • Healing Cancer Naturally
  • Gallbladder and Bile Duct Cancer Support Group
  • Jane McLelland Off Label Drugs for Cancer
  • Bile Duct – Cholangiocarcinoma – Cancer CCA

Those are just a few of what i follow but as you find out more and connect with others (if you wish to) you will find topics you can relate to or think may help in your journey. For example, although a vegetarian for over 30 years, i decided to go vegan after learning how dairy can actually feed this type of cancer, so i found some decent vegan based pages to join for inspiration and ideas.

I can honestly say that through these, and many more, pages/groups, my knowledge has grown no end and as a result, i no longer feel like i’m just exsisting, waiting for the inevitable to happen. I am in control way more than i ever thought was possible.

THIS is when social media does good

Megan x

Cancer, Chemo & Covid

Ten months after the country entering the first lockdown, it’s likely that many of us will have now been affected one way or another.

For anyone who has sadly lost family members or anyone else close to you from Covid, I am so deeply sorry for your loss. For those of you who have been affected financially, whether that is through losing employment or having to shut down a hard worked for business, I pray for you that things will improve…..and they will!

We all know the strain our NHS has been put under throughout this crisis but it has broken my heart and frankly, left me completely baffled as to why cancer patients have had their treatment cancelled or affected. I count myself extremely lucky that although not diagnosed until August of 2020, when restrictions were lifted somewhat, my treatment and all appointments have continued.

I also count myself lucky not to have been personally affected by this dreadful pandemic UNTIL…..

…….I tested POSITIVE!

There is nothing like a cancer diagnosis to make you face your own mortality and although i have come to learn there are many ebbs and flows with this disease, I had pretty much got my head around everything, had a plan and was feeling mentally positive and physically healthy and strong.

Over the Christmas period, I had struggled emotionally ( see post….link) which knocked me sideways at the time. This was unexpected but I put this low point down to being physically exhausted.

Many cycles of chemotherapy (gem/cis) were taking their toll. I had not slept for more than a couple of hours per night for months and was also having to deal with a chemically induced menopause, apparently common in women receiving such treatment. I also am affected a lot by the steroids given on chemo days, leaving me looking bloated and puffy eyed.

At the end of Christmas Day, I noticed I was a bit sniffly and thought I was catching my daughter’s cold (not unusual given the time of year). My blood work had shown my neutrophil count was low, which made me more at risk of picking up infections, so I wasn’t surprised that I may succumb to our common cold.

However, by Boxing Day evening, I was sweating (but felt freezing) and just felt completely out of sorts. I put this down to the exhaustion that is cancer, chemo and Christmas but wasn’t overly concerned.

However, two days later, when my daughters kindly made dinner for the family, I was unable to taste raw onion in the salsa, at which point there was a collective “uh-oh”. As anyone going through treatment during this pandemic will know, I had to do my weekly Covid swab and the result came through 30th December informing me I had tested positive.

I was shocked and by that evening, completely terrified. I had made so many changes to my life in order to help me heal from cancer. I had done so much work, mentally, to deal with my diagnosis and then suddenly I was looking at the prospect of being wiped out by this. As I have small tumours on my left lung, and the virus attacking the respiratory system, I was overwhelmed by fear.

I now had what my friend called a “triple C Cocktail”

Now, due to the cancer and chemo, I really did think this would prove more than my body could tolerate BUT apart from a lack of smell/taste, I was extremely lucky to not experience any more symptoms. Self-isolation actually proved to be a(nother) positive for me but that’s for a separate post.

Have you or anyone you know, had to cope with both Cancer and Coronavirus?

How did you manage?

Fingers crossed for a quick return to “normality”…….whatever that may be!

D(iagnosis)-Day

Being told you have bile duct cancer

Maybe it’s my age, but my memory is shocking! We all do it….go upstairs to get or do something, only to completely forget 13 steps later, busy ourselves with some pointless task, only to remember the second you get back downstairs what you origianally wanted.

But one thing that will be etched on my mind for the rest of my days, is being told i had cancer. Myself and Richard had sat in the waiting room, on chairs metres apart (due to socially distancing regulations) and i nervously scanned the room which was full of wall displays with Macmillan leaflets. I tried not to overthink this.

At this point, i had been given ultrasound, CT and MRI scans. These had shown a shadow on my liver. As scary as that was, i was certain i had a cyst or maybe at worst, a begnign tumour. After all, i felt fine. I was not ill at all, i was just experiencing pain.

We were called into a room where we sat in front of the Dr and a Mcmillan nurse. I should have guessed from the look on their faces that this was not going to be good news. I was right.

I was informed that the shadow was in fact cancer of the bile duct and it had spread to a prominent lymph node. I was also told that my cancer was already at stage 3 and inoperable.

I’ll be honest, i didn’t really take much in after that. I thought i had but reflecting on that appointment now, i really hadn’t. I do vaguely remember the conversation appeared to move towards prognosis at which point i really couldn’t take it. My brain just couldn’t process any more information. All i can remember, is holding up my hand in an attempt to stop them talking and said:

“Just tell me there is hope. If i don’t have hope, i have nothing”

The nurse simply replied, “there’s always hope.” What else could she have said? Richard was beside me, in bits.

We were asked if we wanted some time out in another room before going home, which we did and our lovely nurse talked us through some things (i have no idea what). I think Rich may have asked some questions…again, i don’t know what. It was the most surreal experience and reliving it here, is actually making me feel very emotional.

I only had one question; “how do i tell the kids?”