Today was my DEXA scan day. Prior to starting on Letrozole, my hormone therapy, I need to have my bone density assessed. Letrozole is one of group of drugs called Aromatase Inhibitors and these are known to suck the life out of bones causing Osteoporosis. Why they are not simply called Bone Suckers is a mystery. For every year I take these little blighters, I will lose between 1% and 3% of my bone density. Consequently assessing the state of my bones before starting is somewhat important.
My appointment was at 9am which is always something of a challenge. Rush hour traffic is never pleasant but allowing an hour for the thirty minute journey has previously been ample. Not today. Today the world was heading to the city. I blame the Tories. At least I did at first since their conference was the only reason I could give for the ludicrous levels of traffic. Though personally I would have expected the traffic to be heading in the opposite direction … Once we arrived at the hospital it became clear that the world was also heading here. I wondered if my MP had taken up my Twitter suggestion that she divert a few MPs to ask my hospital why they were not collecting and publishing the data they should be on Secondary Breast Cancer? It seemed not.
By this time, we were so late the Captain dropped me off before he went in search of a parking space. I shuffled off as fast as I was able to be greeted by out of order escalators giving me no option but to take the lift. I missed the first one, was bundled into the second one with five other people which more than filled the tiny space. The doors closed, we reached the first floor, the doors did not open. I will repeat that: the doors. Did. Not. Open. Being stuck in a lift is not my idea of fun. I was already breathless and shaky and this did nothing to help with that. I ended up sitting on the floor. My nightmare is being stuck in lift with an out of order emergency phone. Perhaps I can put that one to bed now as the emergency phone did work. The woman on the end of it was very reassuring. Apparently maintenance men were coming to rescue us. Being rescued would have been nice. We did not meet any rescuers because after fifteen minutes the doors spontaneously opened and we bolted. I say bolted: a lovely but tiny septuagenarian couple offered to haul me to my feet. I politely declined.
After all that excitement my scan was thoroughly dull in comparison. I lay on a metal bed and a space age scanner whirred, beeped and hovered over my nether regions. They said it was looking at my spine and hips. I will get the results next time I see The Doc. Something else to look forward too.
Today marked a moment in our household. It was the day I brought out the razor for something other than my wickedly tenacious leg hair. My arm pits were in need of a trim. This was probably a matter of opinion and not normally something I would announce to the world but it has been nearly five months since I last performed this task. So I feel an announcement is excusable.
My eyebrows have also been remarked upon. Yesterday they drew positive comments from two separate sources. I had been remiss in noticing their reappearance so scuttled away to a mirror to establish that they are indeed looking perkier than they have of late. If thin eyebrows are a measure of insanity then I am heading into the realms of the compos mentis.
The Captain and I have been engaged in hot debate about my other hair. The hair on my head, not elsewhere. Stop sniggering at the back. Its wispy, fuzzy, odd length bits and pieces makes me want to take the clippers to it. It is after all, approximately a centimetre in length on average. ‘You’re quite thick in the head,’ as the Captain put it. And we all know cutting hair makes it grow, right? Could it be that this is an old wives tale? Surely not! Anyway, anyway, anyway. My reasons for trimming it are simple. It looks stupid. There is no guarantee that cutting it will help with this but it may remove some of the wispy. But the Captain will not hear of it. And will therefore not do it. And I am not to be trusted with sharp things alone. Sigh.
It is official. I am much improved. The lack of 5FU in my last cocktail has definitely seem more spring in my step, more boing in my bounce, more spark in my plugs. I have been suspecting things were a bit better for a couple of days but today it sort of burst out of me. You see, I came over all militant. That in itself is not unusual. But today I have taken action! Number of MPs written to? One. Number of hospital Chief Execs? Two.
I have been driven from soapboxing to taking action by the Secondary, Not Second Rate Campaign run by Breast Cancer Care. They published a report in July having surveyed nearly 1000 people and having it read it, two things struck me today. First, 58% of those like me, diagnosed with primary breast cancer, did not know what signs and symptoms could indicate Secondary Breast Cancer, 20% thought they did but were actually wrong and only 22% knew what to look for. This is truly shocking. But given that 60% of hospitals are not discussing this possibility with their Primary Breast Cancer patients it is not surprising. But it is easily remedied. A final conversation with the Breast Care Nurses at the end of treatment, with clear information and points of access laid out for further treatment, would be all that was required.
Of course, to plan for future treatments, it is necessary to know the scale of the problem and therein lies the real issue. Since 2013 it has been mandatory for hospitals to record data on Secondary Breast Cancer. They have to record the numbers diagnosed and whether they previously had Primary Breast Cancer or not. But the vast majority of hospitals in England are not doing this. Breast Cancer Care are now naming and shaming the hospitals they know of so do look up your local: https://www.breastcancercare.org.uk/secondary (2/3rds of the way down the page). This information is crucial. After all, how can you plan for a service if you do not know how many users there will be? How can you assess the efficacy of a treatment if you do not know how many go on to develop further problems? Of course you can not. What happens is that disaster ensues. And that is how the state of Secondary Breast Cancer care is at the moment. And it is unacceptable. This report made me angry. Very angry. It made me sign up to volunteer for the Secondary Not Second Rate campaign. It made me want to educate all I know on what signs of Secondary Breast Cancer to look out for. It made me bang on to a lot of my friends about the injustice of the situation.
But what really tipped me over the edge, what really made me incandescent, was this little film. Take a look and let’s see if the same statistic gets you:
We are about to hit Breast Cancer Awareness month. Pink is going to consume us. I hate the pinkification of breast cancer. I have said it before. I will no doubt say it again. But I can almost (only almost) cope with its retinal burning luminosity by consoling myself with the thought that money will be raised. Somewhat naively, I assumed that all breast cancers gets an equal share of this. Didn’t you? They do not. The tsunami of pink that engulfs us is almost entirely taken up with money for primary breast cancer. Less than 5% goes towards Secondary Breast Cancer. Less than 5%.
It was this that kicked me into action. I cannot standby and allow this situation to go unchallenged.
That is it. Barring disasters, I. Am. Done. Unfortunately, unlike the woman in the picture I am not celebrating with champagne. Rather I am reclining on my couch. Think Victorian lady with the vapours. And a fuzzy head. Both inside and out. I am not sure the Victorians went in for fuzzy heads much but it could have been a thing. Work with me.
My chemo unit were lovely. They adored their gift and three members of staff came to discuss with me how they could improve their introductions. They had no idea they were not doing this and all thought they were. I discovered the hospital’s Chief Exec is also a big fan of the #hellomynameis campaign so hopefully I have pushed an open door. I was seriously impressed that they wanted to talk about my experience. And the jam definitely went down well.
The administration of this my final (did I mention that? It was my LAST one. I would not want you to miss that point) dose was a little tricky. My veins really were at the end of themselves. It took much stabbing and the unit vein expert was wheeled in to finally find one that would co-operate. This one worked but was sluggish. But we got there. It is done. Four and half hours later and we left for the last time. I got hugs from the staff which was nice. But what I really wanted were party poppers, fireworks, celebratory cakes, corks popping, ticker tape parades, balloons, a marching band, trumpet fanfares and humongous great bell for me to ring. And hugs. Not much to ask is it?! I shall blame NHS cutbacks for their absence. Yet another reason to despise Jeremy Hunt.
One of my lovely friends works in a hospital where there is a bell in the chemo unit. In this magical place, at the end of treatment patients get to ring it. She said I could come and ring her bell. But I think I am a little old. It is a children’s hospital. However, I think there should be a bell. A big hum-dinger of a bell. A huge enormous great bloody big bell. And if I had a bell, I would let you all ring it too. So you just know what I have been humming all day, don’t you? Yep, that doyen of a tidy hospital, Anita Ward and her classic: You Can Ring My Bell
Not nearly cool as fellow blogger Sue Pook’s re-writing of The Stranglers’ No More Heroes with the words ‘No more chemo anymore’ but you have got to love a bit of disco. So from here on Things Can Only Get Better. Bear with me as it is going to take some time to return to what passes for normal around here. Several months it would appear *Boo, Hiss* but I will get there in the end. Hurrah! Thank you for all your support. It would have been unimaginably hard without you.