Hello everyone! I’m so sorry about my lack of communication since my operation which was, unbelievably, 10 weeks ago! So, let’s back up to the surgery and we’ll work our way forward to where we’re at now. I had the … Continue reading
First of all, I’d like to thank everyone who took the time to comment on my last blog post. I had a few days to think through all of my options, measure out the pros and cons, allowing me to reach a decision that I felt, all round, the most comfortable with.
Then I got a call from my surgeon saying we had to go with the other option. *sigh*
After my meeting on Monday, he went off to consult with his (wee surgeon pal) colleagues. While they were reviewing my scans, they discovered I have a hairline fracture in my right hip. That puts to bed any thoughts of delaying surgery until after the wedding. In fact, it puts me on the orthopaedic trauma list, and means I’ll be getting the operation tomorrow.
I’m currently packing my ‘oh fuck!’ bag and waiting on a call telling me where I’m going.
So, I expect this is going to be pretty shit. I expect I’m going to need a fair bit of help when I get home. I also expect we’ll deal with it, the way we do everything that’s thrown at us. With chocolate. I mean, together!
See you on the other side xx
Today was the day, 2 months after my secondary breast cancer diagnosis, that I was meant to have all the answers. I thought I’d go in, sit down and be told “right, this is the action plan….” and I’d walk out the door feeling relieved.
When is life ever like that? Never.
What actually happened was that I went in and told that my story is a complicated one (no shit!).
I have cancer in the base of my spine, my hip and femur. The femur is the part that physically could use getting looked at first. The particular area where there’s most ‘activity’ is at the top of the bone, before the knobbly bit (excuse my complex medical jargon) and is the most likely part to fracture or break. The idea would be to drill through the top of the bone, insert a metal rod and put a few screws in down the length of my thigh. Nice right? Doesn’t sound utterly terrifying at all!
Looks a bit like this
Now, the complicated bit. From most of the tests I’ve had, it would seem most of my pain is actually coming from the area in my back. So, if I had this surgery first, I’d have post surgery pain (a lot of it) as well as my existing level of pain. There are other negatives too. Surgery comes with all kinds of risks, namely infection and blood clots. Add into the mix that we are getting married in August after a long haul flight and that risk is even higher.
With so many problems, maybe it’s time to look at option 2? That is, blast the area in my back with radiotherapy and try to address the pain in that area first. Once that’s done, we head off, get married and once I’m home, I have the surgery and radiotherapy in my leg.
Seems like a fairly straightforward decision? Well, except for the fact that if I don’t get this surgery, I’m very likely going to break that bone. It could be as simple as banging it against a table or falling over my dog (he LOVES getting in the way). I can’t even begin to imagine the pain involved with breaking my femur. It makes me feel pretty sick thinking about it.
The decision isn’t so easy now…
It may have crossed your mind while reading this that the wedding shouldn’t be given as high a priority as my health. At this point though, the wedding is of higher priority to me. I have loved Steph for almost ten years and planned on getting married for over two. This illness is not going away and is not getting better. I would rather lose my entire leg than be denied the opportunity to marry him. This wedding is happening! It’s what we both have to get us through the difficulties that have been and are still in the pipeline. I want whatever happens next to happen as his wife and with him my husband.
So, the next step forward is for the surgeon to go off and consult with his wee surgeon friends and my oncologist and get them to take votes/draw straws on what they think they should do.
I should find out in a day or two. Any opinions are welcome. Maybe we should do a tally and send it to the surgeon to enable his decision making process.
Every one for option 1, raise your hands?
Two years ago, I finished active cancer treatment. I was bald, battered and burned but I was thrilled. I was NED (no evidence of disease) which is as close to being ‘cured’ as it gets. I was still suffering all of the after effects of cancer treatment but things were looking up. I had an exciting future to look forward to.
Today, I’m lying in bed, trying to stay perfectly still. Any small movement causes a searing pain. It’s as if my leg is being twisted off.
I am feeling thoroughly sorry for myself.
From the meeting I had with my oncologist on Tuesday, I’ve learned that the cancer is in the base of my spine, the top of my right leg as well as my hip. This means I’ll need surgery. Something to strengthen my bones enough to be able to start treatment. This means more waiting. We all know how I feel about that…
The next stage will be seeing an orthopaedic surgeon and getting a date for the operation. After that, I’ll need to recover enough to start radiotherapy and the bone strengthening infusions.
I’m the meantime, I have to deal with the pain and the knowledge that the cancer is continuing to grow, unchecked and untreated. I’ve been reassured that the waiting time won’t have any major impact on the damage the cancer is doing to my body. Weirdly, that doesn’t make me feel much better.
The absolute fucker of this whole situation is the complete lack of control. I can’t write lists or fill in dates in my diary. I can’t prepare for what’s about to happen in any way and that is just plain old terrifying. I like to be in control in a crisis.
That’s enough of my moaning for one blog post.
Here’s a few nice things that have happened over the past month or so…
1. Holiday to Gran Canaria. If you’re going to be in pain, it might as well be in the sunshine!
2. Long weekend away to celebrate My mum and Step Dad’s 60th birthdays.
3. My amazing friend Kath wrote a book. An actual, published, buy a copy, book. We went to the launch party. I got her autograph! If you, or anyone you know, suffers from Crohn’s disease, you must buy a copy (or 2) right now! Go to: http://https://www.amazon.co.uk/Go-Your-Crohn-Way-Disease/dp/1848193165
So, good things are still happening in amongst all the shit. As well as this, I’m still seeing friends, going out for nice food (not great for my diet but I’ll get back on track with that later) and planning the wedding. These are the parts of life that make the pain worthwhile. And they really are.
One of the worst things about cancer is all the waiting.
I’ve had pain for months and we have waited to see if it’d go away. When it didn’t I had to wait for an appointment for a bone scan. When something worrying was detected, I waited (very briefly) for more scans. Once this was done, I waited to see my surgeon, and to be told the cancer has spread. I then waited for blood tests, a chest x ray and a liver scan. After that, I waited to see my surgeon again. He told me there was, so far, no spread into my organs but they’d need to do more CT scans of my bones to find out if the spread has gone beyond my hip.
That’s where I’m at now. Waiting. Waiting to find out just how far into my bones the cancer has infiltrated. Waiting to find out what treatment I’ll need. Waiting to get some kind of idea of my long term prognosis.
Do you know the worst thing about all of this waiting? Time. There’s too much of it and not enough simultaneously.
Too much time with no real knowledge has me bouncing back and forth in my mind between planning a future and an end. Every possible outcome has been rehashed in my poor, tired mind countless times. I worry that all the time I’m wasting waiting is going to cut shorter the ‘real’ time I have left. I want to make decisions based on knowledge. I want to make plans based on fact.
But I can’t. Because I’m still waiting. And wasting time.
It’s been exactly 2 weeks since I found out I have incurable, scary, intrusive, life changing cancer. What a total fucker.
In that time, I’ve learned a whole lot of stuff I never thought I’d have to. I’ve had to consider that plans I’ve made and the future I thought we’d have may not happen as we’d wanted. My mind has been working overtime and the poor thing needs a rest.
Since my last blog, I had a lung and liver scan, both of which came back clear. That rules out needing to have chemo for now. Big phew!
I still need to have a full body CT to determine exactly which areas in my bones have been affected by the breast cancer metastases. Once the results come back, I’ll start radiotherapy and a biological therapy called denosumab. Both treatments will help with the pain and help prevent any further spread of the disease. We hope.
The question I’m asked most is about how I’m dealing with everything.
Physically, I am dealing with a lot of fatigue and pain. My hip and lower back feel as though they’re being crushed and that is often combined with a sharp stabbing/twisting sensation that makes me think my hip is going to dislocate. I still have the ‘normal’ pains from treatment too, including sore joints, numbness, burning and throbbing in my feet and hands and the odd partial subluxation in my shoulder. Pretty grim list right? I’m on am impressive cocktail of painkillers to help make this part tolerable. Sometimes it is. Sometimes it gets too much and I have to go into hiding in my bedroom with a bottle of Oramorph to keep me company.
Mentally, it’s more complicated. Trying to make sense of my thoughts and feelings is really tricky as they change constantly. When I think of my illness, I range from feeling frightened, sad, angry and lonely. I feel like it’s not fair and life is a bit of a bastard.
However, when I think of my life in general, I feel lucky, loved and extremely grateful for everything I have. I’m surrounded by the most wonderful people, particularly Steph, my family and my best friends who look after me amazingly. Cancer doesn’t define me. My life is made up of so many other facets. I might need reminding of that from time to time though.
Now, onto a couple of good things. I got a surprise visit from my Dad (who lives in Atlanta) on Friday. I got to spend the next 5 days hanging out with him. We visited family and friends, we went for walks (mostly short ones what with me being a hobbler) and generally got go enjoy time together that a phone call or facetime just can’t replicate. It was a very sad goodbye but we’ll see each other again in August when we all board the cruise ship that Steph and I will be getting married on. The thought of that trip and returning as Mrs Wilson is keeping me together at the moment.
Just as my dad makes his way back across the Atlantic, Steph and I, along with my sister, her partner and a group of friends, are starting to pack for a week in Gran Canaria. I got permission from my oncologist and surgeon to have the beginning of my treatment delayed to allow us a bit of time to relax and enjoy ourselves before the tornado kicks off again.
We’ll worry about that next week though.
When you’re faced with the possibility of a worse case scenario, you spend a lot of time being frightened and imagining how you’d react. When it happens, it’s very difficult to feel anything at all. Odd?
That elusive introduction was my way of working up to telling you that my cancer has come out of hiding and has spread. Fuck.
Every ache, pain and twinge for the past two years has been followed by my cancer traumatised brain concluding that it must be back. This time I was right.
For the past few months I’ve been suffering from pain in my hips. It’s a very common side effect of the treatment and medication I’m on but there, in the back of my mind, the fear began to form. I’d have days where the pain had vanished. I’d walk the dog, go to work and the fear would fade, almost to the point of being forgotten. Then it would return, alarmingly fast and insistent on being acknowledged. Over the past few weeks, the duration of the pain would increase. I had 3 days of being almost unable to walk and a further 3 where I could manage a hobble. This was the point I decided it probably wasn’t a simple (but annoying and inconvenient) side effect. I contacted my breast care nurse and asked for a scan.
On Tuesday I went to hospital and had a bone scan and an x ray.
When you’ve had lots of dealings with medical staff, you can get a pretty good feel for subtle changes in demeanor. The pitch and speed of their voice. I knew something was wrong and I was scared.
My mum tried to keep me positive and remind me that it wouldn’t help me thinking the worst. It turns out it didn’t matter what I thought. The nasty little bastard had already taken up residence in my bones and was working on doing as much damage as it could before being noticed. I found out yesterday.
Secondary breast cancer is also known as metastatic or stage 4. It happens when cells from the original cancer spread via the bloodstream or lymphatic system and begin to grow in other parts of the body (most commonly the bones, liver and lungs).
The hardest part to tell you about all of this is that this type of cancer is incurable. I will have cancer for the rest of my life.
It is, however, treatable. That means it can be contained or minimised for many years and new treatments are becoming available all the time.
I haven’t given up hope yet so you can’t either. OK? Good.
Today I went back in to hospital and had my lungs and liver scanned and on Tuesday I’ll find out if the cancer has spread into them.
When we have all of this information, I’ll have a much clearer picture of what my treatment will entail.
I’ll update you all as soon as I have more information.
As ever, Steph, my family and my close friends have been unfaltering in their strength, support, love and cake. I’m still feeling pretty lucky to be me.