To my dear friend, Mrs Hurley

Dear Mrs Hurley,

I do hope you don’t mind me writing to you publicly through my blog but I suppose I’d like to boast that I know such a fine woman and can call her my friend. The last year has been, I can safely say, hell for you and Mr Hurley. I vividly remember last September speaking to you on the phone. We were in Lincolnshire looking at houses and I was too tired to look at yet another so Mr Mason and Mrs Safaie went off and left me on a bench. We spoke about a few things but also about the problem you had found with your neck. No-one knew what it really was but it was suspected to be cancer and they were planning an exploratory operation if you were up for it. From memory, and I may be wrong, you were offered chemotherapy first which they did not know whether it would work or not or surgery. The surgical option involved breaking your jaw and getting into your throat to hopefully remove the tumour so you would need little treatment afterwards. You chose the surgical option, even though it was more brutal, and went on a tour of Southern England the week before to take your mind off it. By this point, I was having an extremely toxic reaction to Lapatanib/Capecetabine and was struggling to walk and heave myself out of a chair but, being the kind old thing you are, you scheduled in a day, any day that suited us, to come and visit. You brought lots of treats with you including a Sutton Hoo mask and a knight you reanimate by putting in water. Also marshmallow of a superior kind. It was so lovely to see you and you stayed just the right amount of time as I was very tired and my eyes tended to go round if I talked for too long. That was the last time I saw you.

You decided on the surgical option as first line treatment. Alas, the removal of Gove was not successful and after the operation, you were told that Gove was still in residence as he had been wrapped around something important and had generally been sneaky. From the very beginning, the tumour was Gove, even when Nicky Morgan took over. Somehow, Gove just fitted better and gave us something to focus on. You were due to be in Intensive Care for a week but were out within a few days and home within a remarkably short space of time. I know things were difficult for you and although you have great friends and neighbours, it quickly became obvious that you were not going to be able to look after yourself at home. Not being able to drive meant hospital trips had to be down to someone else – hospital transport is just ridiculous. You had several run-ins with unsympathetic community nurses who seemed incapable of understanding you were on your own and dealing with the effects of major surgery and cancer treatment.  “Lots of people having cancer treatment live on their own”. Completely on their own? “Well, they all have someone to come and stay – a friend of relative.” So, not really on their own, are they? At this point I know you went into hospital again because you couldn’t eat or take care of yourself. It’s a horrendous thing to face at our age when we know we can’t survive on our own and takes a huge amount of getting used to. It dents confidence and our sense of self. It’s a hard thing to adapt to. After two weeks of mysteriously losing weight and not being able to eat anything, they discovered your swallowing mechanism wasn’t working at all so you were aspirating anything you ate. So the feeding tube was inserted and I know you had a meltdown around number 16 because you told me. Number 16? I would have been melting down way before that. Not surprisingly, chemotherapy was delayed while you dealt with pneumonia and the constant radiotherapy that left your mouth full of ulcers so you were in constant pain and unable to talk. For a woman who likes an intelligent conversation, being struck dumb is a cruel punishment. Being a person who has needs only others can fulfil is a sheer torment but you got through all this. You didn’t like it but you still did it.

It’s taken a long time – I reckon you must have been in hospital for 6 or 7 months. We can’t talk on the phone because you now need 2 hearing aids (with which you will have tremendous fun, I am sure). You’ll have to turn them up when I’m around – my voice is so weak. Oh, the fun we can have! Dinner is delivered via tube and thankfully, can be whatever you want down to your wonderful imagination. When you finally came out of hospital this week I felt quite emotional. I can’t bear being there overnight let alone for months and I know you were frightened at the thought of coming home but what you have endured over the last few months has been incredible. When we couldn’t speak, we sent texts, emails or Facebook messages – there was never silence, even through the worst times. I cannot really imagine what you have been through, my dear friend. You always talk about me being brave and amazing (which I think is nonsense) but have you looked in the mirror lately? When cancer hits us, there are very few options. We can dismiss treatment, kill ourselves or go along with it. I can’t think of anything else. Most of us choose to go along with the treatment plan. It’s not brave or amazing, it’s just what you do when you are faced with a life-threatening illness. The road is generally tough, simply because of the shock of the cancer diagnosis, but some roads are certainly rockier than others and I think yours is just about as rocky as they get. So I salute you for the way you have handled things. Gove and his Govelets have been left behind at the hospital and hopefully will never get to make an appearance again. I like to think of them being incinerated and squealing. All through your treatment you have been worrying about me. Well I’m fine and dandy and about to whip another consultant into shape. It’s the only way to get through, as you have found.

As soon as you’re up to it, there will be a full-frontal assault by the Masons including Dog and Lark. The latter is a good little cuddler. Until then, know you are in my thoughts daily and I can’t wait to see you.

With lots of love, Mrs Mason xxxxx

Cutting it fine

OK, so Virgil has crashed and burned as an oncologist in my opinion. Why? Firstly there is the suggestion that he sees me only 4 times a year. Hmmm. For someone with secondary cancer, pleural effusion and a tendency to be unstable on chemotherapy, this seems an extremely bad idea. We have maybe a total of 20 minutes talking together yet he thinks this is enough to know me and my cancer. It’s not as though cancer follows one path (and, pardon me, but my cancer is the rare and aggressive Inflammatory Breast Cancer. You don’t see many of us around). Everyone is different and since the reocurrence, my condition has been complicated. So I say my bit about usually being seen every 3 weeks and he agrees to this. Except he doesn’t really. A week before I would be due to see him, I ring his secretary to say I have not had an appointment. That’s because none has been made. OK, this could be an admin error but he should be looking out for things like this. I know my previous oncologist would have. The first appointment I can have is on 12th June, a month since our last meeting. Since then there have been an echocardiogram, blood tests, including tumour markers, and a CT scan. Have I had a since result from any of these? No, of course not. I asked for the result of my echo at the time but was told it is not policy to tell patients “as they might not understand”. Surely if you ask for the ejection fraction it shows a least a smattering of knowledge? I phone my GP to see if he has the results. No. If the ejection fraction is too low, I will not be able to have chemotherapy on Tuesday. I phone Virgil’s secretary. Not only is it the usual “we don’t give results over the phone” (which I accept and would like to point out that she has been very helpful so far) but Virgil hasn’t even looked at the results so there is no report to send to my GP. Cutting it close, Virgil, cutting it close. So of course, there are no blood test results, no tumour marker results and no CT scan results.

For anyone who has to have regular tests, the waiting around afterwards for the results can be excrutiating. It highlights here the dissonance between Virgil and I and his apparent lack of understanding of what it is like to be a patient. Especially a patient with a terminal illness who is really, really keen on keeping everything on track so she can hang on as long as possible. It makes me very angry and upset. Yes, he’s probably studied hard somewhere and it may have been a struggle but what use is that without a rapport with your patient? The patient/doctor relationship is so important and perhaps what’s worse than his lack of empathy with me is that I don’t have any faith in him. I don’t have any faith that he would go all out to find a new treatment, research options or really look after me. I feel like something on a conveyor belt, being churned out and if I’m not the same as the person before or after then that’s my hard luck. For God’s sake, this is my life we are talking about, not a minor illness. Having optimism, faith and a positive outlook is crucial in making my time as good as it can be. It’s all about quality of life.With a lot of pain, fatigue and just the reality that secondary cancer brings, it’s normal for me to be beating off depression or just general low mood. I feel I’ve done my bit with changing work and moving home. What I really need is a specialist I can rely on, who can understand this and see me as a complicated but interesting puzzle which he or she wants to solve or at least outwit the dreaded disease for as long as possible. I just don’t have that feeling with Virgil.

So, the second opinion is on the horizon and I am really hoping this doctor will have a better attitude. If it seems he is constrained by his Health Authority (which may also be a reason for Virgil’s apparent failures), then I will be looking further afield. I have my sights set on Addenbrooke’s or Sheffield and I’d be really happy to hear any recommendations from anyone who is/has been treated at either hospital.