Sometimes I wonder how people find my blog. Like the recent day which saw a huge number of hits from Kazakhstan – brilliant – and the steady number of readers from Switzerland, where I know no-one. Last year I was read in 49 countries. But I’m also interested in other people’s blogs, espeically those who write about cancer and, more particularly, those women who have Inflammatory Breast Cancer. Inflammatory Breast Cancer is a rare, aggressive form of cancer and this is the sort I was diagnosed with in March 2012. One of the ways people find me is through the Being Cancer Network – a blogging resource for people transformed by cancer (to quote). It’s possible to search the blogs according to the type of cancer the writer has and, of course, I want to read the blogs of those who have Inflammatory Breast Cancer (IBC). What is depressing is the number of bloggers who are no longer blogging because they have died. Yes, it’s a hard thing to read and it’s a hard thing to write. Their blogs show photographs of healthy, happy young women, some with babies and young children and it’s like a punch to the gut to realise they are no longer alive.
I know I don’t always talk specifically about cancer, partly because it’s a horrible subject and also there are other things in life which are much more interesting. But whatever I write about, cancer is somewhere in the background, having an impact, ordering my life and making its presence felt. It’s almost impossible to forget about it, to lead a non-cancer life. My diary is ruled by cancer. Hospital and doctor’s appointments always come first and everything else is fitted in around it. After the appointments, my diary is ruled by how well the cancer lets me feel. Do I feel well enough to meet with friends, go to a meeting, do the shopping? Do I even feel well enough to get dressed? Work and even moving house is guided by cancer. We work around it as far as we can, trying to bend it into a shape we can work with but it is difficult. It is woven into the fabric of not just my life but Mr Mason’s and, to some extent, my offspring. It’s like a pebble dropped into a pool – the ripples just keep on going.
At the moment pain is also directing what can happen. I have a lot of pain in my right upper arm and shoulder. It could be caused by many different things but, of course, the potential cause at the top of the list is that the cancer has progressed to my bones. At this point there is no reason for alarm. There is no evidence of metastases at present and a bone scan next week should tell us what’s what. One of the other issues is that cancer comes at the top of the healthcare list and if the pain isn’t caused by cancer, I suspect it will just be dealt with by more painkillers rather than investigating the real cause. It’s a bit like the problem I have with my voice. We know the vocal chords are paralysed on one side. A CT scan revealed there are no enlarged lymph nodes pressing on them which had been suggested as a possible cause but now we know what isn’t happening, there is very little interest in what is happening. The surgery to give me back my voice is booked for later this month but no-one seems bothered as to the cause of my weak and husky voice. Is it that spending the money on someone with Stage IV cancer is not worthwhile? Surely it can’t be that basic? Perhaps they are trying to spare me yet more hospital appointments. Whatever the reason, I don’t feel I have the energy to demand investigations and yet I really do want to understand what is happening. I’m sure it’s no different from any other long-term health condition but having cancer really is exhausting, mentally and physically. It’s like a pretty crap full-time job with a rubbish manager (and I’m thinking of someone specific there) and a never-ending heap of work to get through.
Today I visit my GP to see if we can get my blood pressure under control. The Kadcyla has made it rise and it’s being stubborn about behaving. My GP tells me that being in pain is also going to make my blood pressure go up so we discuss various types of pain relief. I can tell this woman wants to understand, as far as she can, what it’s like to have Stage IV cancer and she asks lots of different questions about what I am frightened of and how I can be supported. I am slightly taken aback when she asks about end of life care and which family members I would like to provide it. Here I sit on this see-saw of optimism, thinking ahead in years and then suddenly I am dumped on the ground again with the possibility that I am being too optimistic. Darn it, I can’t live my life thinking I will only be around for a short while. I have plans, I have targets and goals I have set myself. I have new things to learn, new skills to acquire, a new house to play with and battery chickens to rescue. And I have MPs to pursue.
Last year, I emailed my MP, Angie Bray, to ask her questions about the Cancer Drugs Fund and about teaching school children in PHSE lessons how to be vigilant about cancer. I got a response to my first email and then there has been absolute silence. My second and third emailed questions are just hanging in the ether. I waited patiently, thinking she may be enjoying the long vacation which MPs have (although I know most of them work through this) and then sent her copies of my emails and asking for a response. It is now 2 months since I wrote to her and I am still waiting to hear what she has to say. As a constituent, I am incredibly disappointed that my MP, for whatever reason, has not responded, particularly with the General Election coming up in May. I would have thought that the CDF is an important enough topic to warrant a response as is health education but clearly, it hasn’t risen to the top of Ms Bray’s list yet. And if I’m getting an email acknowledgement each time I write, surely this means it is not going into a spam folder? I would hate to think I will get a response based on the fact I am blogging about it on social media and that the blog is read by a respectable number of people in the UK and worldwide. Come on Ms Bray, pull your socks up and answer the difficult questions I sent you.
Hi just wanted to let you know I’ve came across your blog through a search of the site. Looking for others that’s had/have ibc. Hard to find, especially women in the uk! ❤️
Hi Christine, I’m glad you found me. Did you know there is a uk support group on Facebook for women with IBC? It’s a great group – very supportive and informative, too. I’d be happy to direct you if you email me. We also have meet-ups at various times during the year which might be of interest to you.
You should be able to email be at firstname.lastname@example.org joining the Facebook sounds like it would be very helpful. Finding people my age with bc is hard enough never mind people with ibc 🙂
I’m totally with you on the sadness of losing friends/readers/fellow bloggers who had cancer. My friends’ list on Facebook is scattered with several who are no longer alive. I’m loathe to remove them because they’ll never send me another friend request to undo the removal.
And I’m totally with you about how cancer is always with us, even when like me, I’m in good remission – coming up to three years post-transplant! And even the GvHD (effects from the transplant) are improving, thus giving me longer-stretched out hospital appointments. It’s still there. It’s still a major player in my life decisions and my lack of looking too far ahead.
As for end of life care, we ALL have to face it, it’s just that you and I and others with incurable/aggressive cancers, get to face it more openly. I’m not judging you AT ALL, but I’d be pleased if my GP (who’s also lovely and wants to understand) asked me that sort of question. It’s good to think about it, prepare for it and get it agreed how you want it now while you’re in reasonably good health. Same with funerals! Not at all plugging Death Café. LOL!
Big hugs to you Shelley. Hope we can meet up again soon. x
Thanks, Jet. It just struck me over the weekend how much there is unsaid and sometimes I have to move away from the cheery “I’ve got cancer but it’s OK” mode I normally operate in. I’m not at a stage where I want to think about end of life care. It will come in time but it’s not right for me just now. And yes, we’ll meet up sooooooon! xxx
It’s sad to read your email which underlines all your going through. I’m pleased you did it though because your blogs are always upbeat although they contain details about how you are, it’s easy to overlook all your going through. Whilst there are people that show interest in what’s going on like the GP I always find it so annoying that they don’t keep in mind how some question they pose can impact someone. Your climbing such a steep hill and what people say can easily make the angle of that hill more accute. Sorry if this has been a bit to serious, probably doesn’t help but. Do take care of yourself and good luck with the move, yet another adventure and it all goes so smoothly doesn’t it!
Hi Mo, it’s lovely to hear from you. I’m sure your condition impacts on your life in just the same way. It’s a bugger, isn’t it? I normally write positive things but I just wanted to share the other side today. And it’s World Cancer Day apparently, so I picked a good day! I hope we’re going to see you soon once the weather has warmed up a bit. Lots of love xxxx