I’m not sure if I’d ever really given any thought to secondary cancer. As far as I was concerned my mum was a survivor. She’d kicked cancer in the ass and, somewhat naively, we had moved on.
I was wrong and we had another battle on our hands. I say that collectively because she was never going to be fighting this alone. We were all in it together, whatever ‘it’ was at any given time.
I could tell my mum was reluctant to involve me too much at the beginning. She thought I had enough on my plate but I had two reasons. One, to be completely selfish about it, I NEEDED to be involved. Secondly, it was a lot for my dad to take in and to manage so he needed us too.
Despite my mum’s protests I accompanied them both to the initial appointment with the oncologist. I took a notebook because I thought we’d all probably struggle to remember everything. Having said that, after ten years, the details are very fuzzy and I have no idea where those notes are now. It’s not really something you would ever really want to look back on although I guess it would have been handy now!
I will tell you what I do know though. The cancer had moved to three main areas of my mum’s body – the skull to shoulders, mid-region (pelvic area) and around the lower section of her legs.
Secondary cancer in the bone is the result of cancer cells spreading to the bone from a primary tumour somewhere else in the body.
Breast cancer is one of the most common types where this happens.
*Symptoms of secondary cancer are:
• “Bone pain – The most common symptom of secondary cancer in the bone is pain in the affected area. The pain may be a dull, persistent ache, which can occur during the day as well as at night. There may also be swelling and tenderness in the area. If you have this type of pain and it lasts for more than 1-2 weeks, let your doctor know as soon as possible. Although bone secondaries can occur in several different bones at the same time, usually only one or two areas are painful.
• Weakened bones – Sometimes if a bone is weakened by cancer it will break (fracture), even if you haven’t had an accident or fall. This is known as a pathological fracture.
• Raised calcium level – When bones are affected by secondary cancer cells, increased amounts of calcium (the substance that helps to build bones) may be released into the blood.
• Pressure on the spinal cord – If secondary bone cancer affects the bones of the spine, it can put pressure on the nerves of the spinal cord.”
*[christie.nhs.uk]
I just want to highlight that first bullet point. I’m sure you can now appreciate our frustration at the apparent nonchalance of the doctors my poor mum had put her faith in. A whole year was wasted and we will never know how much difference it would have made to her prognosis. It’s hard not to dwell on this but sadly there’s nothing we can do about it now. We had a right to be angry though. Reflecting on the points above, not only should the doctors have organised scans but, at the very least, they could have carried out some blood tests which may have revealed some abnormalities, such as raised calcium levels. It all seems so fundamental in hindsight.
If the GP practice let my mum down, the intervention from diagnosis and beyond was exceptional. One of the things that amazed us at that initial consultation with the oncologist was that results and samples of my mum’s primary cancer had been stored in a laboratory in Wales for the past 15 years and could therefore be retrieved and checked to help decide on the treatment for the secondary cancer. We were fascinated by this fact. The outcome was that the type of breast cancer had been ER-positive. Breast cancer that has receptors for the hormone oestrogen is called oestrogen receptor-positive (ER-positive) breast cancer. About 70% of breast cancers are ER-positive. (The abbreviation came from the American spelling, hence ‘ER’ not ‘OR’).
A lengthy discussion followed regarding prognosis and treatment but the principal message was that it would not be possible to get rid of the cancer. I distinctly remember the oncologist stating to my mum “You will die WITH this but not necessarily FROM it”. My interpretation of this was that she would need treatment but the cancer itself was not going to end her life. The key bit being “not necessarily”. Of course there are no guarantees. Cancer is brutal and unpredictable and it seems everything is in some way a trial and error.
Mum was asked if she would be willing to take part in a clinical trial which consisted of an infusion. I genuinely cannot recall what this particular one was and wouldn’t like to misinform anyone but she agreed to be part of this research. All I remember is that she had ongoing regular treatment at the hospital. It was hard to tell what effect this treatment was having because she rarely complained. The main thing I do remember is her quite regularly rubbing and sometimes gently banging her left arm which suggested a pain or aching of some sort.
For the most part we carried on with our lives almost obliviously. It was all in hand, why should we have thought otherwise?
To quote the great and almighty Martin Luther King “Faith is taking the first step even when you don’t see the whole staircase”.
To be continued….
Hoping for a Happy Ever After 