Tag Archives: stage iv cancer

Sorry, this may be upsetting

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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.

Woobs!

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It’s been an interesting week. Chemotherapy is still making me feel incredibly tired. Most days I can easily sleep for 12 hours and there are quite a few pyjama days on the sofa. On Wednesday, however, I have an exciting appointment at Maggie’s. We are having a woob decorating session. What is a woob? I hear you cry. Woobs are the brainchild of Jane Hutchison who runs the charity Hello Beautiful, helping younger women to be aware of breast cancer. Woobs are wooden ‘breasts’ which come in 3 shapes, one representing a lumpectomy, one a reconstruction and one a mastectomy. Ms Frumin picks me up in her car, known as the boiled egg, and we set off for Maggie’s. Luckily I am familiar with the route as Ms Frumin is not good with direction and frequently tries to make turns which will take her home. At least she has a homing instinct and is a good driver, to boot.

We arrive at Maggie’s and immediately see 2 friends I haven’t seen in ages. One has come down from Cambridgeshire and another from Kent. More people arrive and we sit at the table which is laden with paints, pens and brushes and all say how we’re not good at painting and how awful our attempts may be but once we select our colours, our paints and our brushes, we seem to forget all that and become absorbed in the task. It feels a little like a really good school art session and we talk and laugh as we paint. Ms Frumin tells me later that she was not looking forward to the painting session at all but once she was there, she enjoyed it so much she stayed longer than she planned. The act of painting feels soothing and calming and I make a mental note to do more painting.

DSC_0795DSC_0791 Woob011014

I am also in receipt of 2 parcels this week. The first is sealed under many layers of tape and takes me a while to open. Once open, it reveals a spillage of loveliness. There are packets of jelly, chocolate buttons, honey, Angel Delight and tissues – everything I could want to deal with the permanent drippy nose and the limited ability to eat hard foods. I have not had Angel Delight in years butimmediately plan to start eating it again, courtesy of my school friend, Ms Peek. My second parcel is a fabulous hat and beautifully knitted socks for my chilly feet from my Norwegian friend, Ms Stokke. She is an absolute whizz with knitting needles and a crochet hook. It is a week in which I feel really taken care of by my friends. It takes the sting out of trying to find proper travel insurance. Now I am diagnosed as Stage IV, my current insurer declines to take care of me and refunds my policy. I check with others who have cancer on various Facebook pages to find personal recommendations of insurers. There are not really any good leads and some bright spark who doesn’t read the post tells me Boots does travel insurance. At this stage I just roll my eyes. I speak to a whole lot of people on the phone who, after taking all my details, decline to insure me. Sometimes they talk to the underwriter in which case I am offered a policy to mainland Europe which is actually no good when I am travelling to Thailand. One company will not consider me until October, the month I am travelling. They want a blood test done before I go and then for me to delay chemotherapy until I get home. The woman warns me “It will be expensive”. This I already know. Eventually I find a company who will insure me. It will cost £1700 for the two weeks we are travelling. I am just pleased to have found someone who will take a chance on me.