I should be so lucky, lucky lucky lucky....

It has been a very eventful few days. Well, I suppose you could say it has been a very eventful four months...

Where to start. Obviously, last week was a bit of a cock-up and I was frustrated and somewhat angry. Of course, the anger was really borne out of the fact there have been a litany of what I perceive to be cock-ups within the oncology dept of the RB. The odd cock-up is forgivable, but I feel I have been on the end of more than that and, as I received an apology for the very first one back in March when I 'fell through the crack' in relation to not being told about starting date for chemo, I think my frustration is bona fide.

If you have kept up with this blog, you are aware of all them. For those who skim it (naughty naughty), my frustration has not been with the actual treatment, which is excellent and second to none in the world, but with the organisation and, more importantly, the total lack of communication. The patient, it seems, is the last to know anything.

Last week was the last straw for me. The lack of oncologist to discuss chemo with when I was told there would be one within the meeting was the last straw for me. Having cancer is a pretty stressful situation for a person to be in; being kept out of the loop and being pushed from pillar to post doesn't really help much.

Actually, my experience is cancer is managable; I can handle cancer. I can't, however, handle being treated like I am not the most 'important' person in the menage a trois that is 'patient, surgeon and oncologist'. It has felt, to me, that I have no voice, no opinion and my feelings are of no importance. They seem to think the patient is not part of anything happening. Their actions confirm to me that they make their decisions (which I don't criticise and bow to their expertise and judgement) but don't discuss them with the patient. Indeed, there seems to me that they don't think discussion is relevant and, at its worse, that they don't need to convey information like 'you are not having anymore chemo' officially or 'this is your date for surgery'. I have to try and find out when!

It can be like trudging through treacle to know and understand anything that is happening.

Anyway, enough of my negativity. Let's talk about what seems like my monumental effort to sort this out has achieved.

Yesterday, I had a meeting with House. I was nervous. House if formidable. I am merely a patient. I knew what I wanted and I knew I had to be calm, yet assertive and articulate, yet polite to get it.

Imagine my surprise (not) when bloody Woolley Omar calls me in. He who answers no questions without fudging; he who tells me 'there will be a joint meeting' when there is not.

I took a deep breath. I thought of saying 'I was under the impression this meeting was with House'. I did not. I thought 'for fuck's sake, just do it woman'.

So I did.

For clarity and for ease of reporting here, I will split each part of this 40 minute meeting into subheadings:

1. No oncologist at meeting

I got an apology. Omar didn't understand why there was no oncologist available. There should have been. It was a 'joint meeting'. He understood the difficulty of being told by a surgeon 'no more chemo' when said surgeon does not have the ability to discuss why this clinical decision was made and what the consequences are.

2. My skin

I had a meeting with my derm last Friday. I was under the impression that part of the clinical decision to stop chemo was because of my worsening psoriasis. Silvano said 'they should contact me if they are making clinical decisions based on dermatology'. They have not. Indeed, they have not contacted Silvano at all, apart from the initial 'we want the patient to come off biological therapy for chemo' back in March. Silvano assured me that my skin should not be a factor in their clinical decision making. That it is his field and he will take care of me if my skin worsens to the point surgery might be difficult. He assures me it won't. I trust him completely.

Yes, said Omar, my skin was partially why they decided to halt my chemo. However, when I told him what Silvano said he acquiesced. He also admitted that the lack of communication with Silvano, as a whole, was probably not the correct way to handle the situation and he wasn't sure why no letters had been sent as a matter of course...

'Are there any other factors in your clinical reasoning for halting chemo' I asked. This takes me on to the next bit...

3. Colin the tumour, the little fuck

'Well' said Omar, 'ultrasound doesn't show a significant shrinkage of the tumour'.

'Does this mean Colin is chemo-resistant' I replied.

'Perhaps' said Omar.

'What about Scouse's clinical evaluation that actually, in his opinion, the tumour seems softer and that the chemo is actually having some effect, particularly as my ultrasound came very early in the cycle because of the timetabling of meetings?' I asked.

'Yes, Scouse has written this in his notes and, taking that with the early ultrasound and Silvano's directive perhaps we ought to give you another cycle of chemo...'.

'Perhaps' I continued, 'I could have another cycle of chemo and then Scouse could do another clincial grope of my tit in say two weeks and re-evaluate the situation then?' I continued.

'Yes, that would be a good way forward and, as your surgery is provisionally booked for 29th July, having one more cycle of chemo is possible and we could still keep that date if there is no difference in Colin and, if there is, perhaps we could do more chemo and then push the surgery date forwards'.

So surgery date is decided.

'Oh, do you not know the surgery date?' said Omar, with a look of surprise.

No, of course I bloody don't. You lot never tell the patient anything. I found out about my chemo date from a bloody text message. Hey, I bet I would have got another text message telling me 'Don't forget your life-saving operation to remove your right tit, which will have an enormous affect on your whole life @ the hospital in 29/07'!!!!!!!!!!!!!!!!!!!!!!

'No' I said calmly to Omar, 'but I know now'.

4. Second opinion on surgery

I have a friend. She just happens to be a nurse who works in a unit that carries out surgery on the breasts of women with breast cancer. I explained my options, as laid out by Scouse last week to her. She said it seems Berkshire PCT does not offer the 'full monty' of available surgery and reconstructions. Her PCT has both onco-surgeons and plastic surgeons. Perhaps we ought to get a second opinion, she said. I agree. But how do you go about this...

Said friend is finding out from her surgeon the options as he sees them with what she tells him. If there is a chance of an improved outcome I will try and organise a meeting with Mr Craven of the NEH PCT.

'I wish to get a second opinion with regards to surgery options' I said.

Omar looked surprised.

'Not.' I continued, 'because I do not trust the skills and judgement of Scouse, but because I think he is potentially bound by what this hospital can offer me'.

I explained, in detail, that there are other options available outside this hospital. Taking into conideration I cannot have my breast rebuilt at a later stage if I require full mastectomy (I will have to let you guys know all about this in another blog!), and that I have psoriasis (again, the significance of this I will go into another time) it might be pertinent to seek another opinion.

Omar understood and said to let him know asap so available notes can be sent to secondopinionMrCraven.

5. The importance (or unimportance) of Chemotherapy in Breast Cancer Type II

Feeling that the meeting was going well, or perhaps I should say that I felt I had some control of the situation and could get more information out of the lesser-spotted and rarely seen oncologist bird in its natural habitat of the RB cancer unit, I asked specific questions about the relevance of chemo and outcomes.

Turns out that some tumours are chemo-resistant. Sometimes it is not worth giving a patient chemo with my type of tumour. Yes, there is an increased risk of relapse and the re-occurance of breast cancer as a secondary, but the risk is approximately 10%. I cannot really claim to completely understand this statistic or where it comes from, but it seems to me that surgery and radiotherapy are the most important parts of cancer treatment for a person presenting like me. Chemo, used neo-adjuvantly (before surgery) is useful because it can shrink tumours (making for an easier surgery) but also because it can show whether chemo actually works. My thoughts that adjuvant chemo is a 'blunt intrument' and nothing more than a partial 'insurance policy' were correct. Some women have adjuvant chemo and it doesn't work, except no one knows it doesn't work because there is no mate of Colins left in them to measure it by. Boy, I am glad I had neo-adjuvant chemo. At least I know Colin is a fuck...many women go through gruelling chemo for nothing but never know it isn't working well.

'Taking all things into consideration' said Omar, 'adjuvant chemotherapy would probably be a waste of time with you'.

Lastly, I thanked Omar. I shook his hand and said 'Thank you, sir, for your time. It is much appreciated'. He looked relieved actually. It must have been gruelling for him to be pinned down. I am not sure they are used to it! But look at the result? I actually feel like I have been part of my treatment plans. I have made an oncologist change the treatment plan because I was able to point out 'we could try this and see what happens' and 'nothing ventured, nothing gained'. If I had said nothing and blindly did as they had said, I might not have got the potentially better treatment. Anything that makes Colin, the little fuck, smaller has to be better for my surgery options...

OK. Now I am going to hit you with the big mother of all eventful happenings of the last few days. I wasn't expecting it. It has been a bit of a shock and is going to change my life beyond cancer.

No, I am not pregnant.

I am being made redundant. I am going to be jobless and homeless come the end of October. I cannot and do not wish to say anymore on this. But it is very sad and no ones 'fault', it just 'is' and I have to deal with it.

Timelines of treatment should mean I am cancer-free by the end of October...

But hell, how unlucky can one woman be???

My old boss and I have a game. We like to outdo each other and see who has the worse life. So I get the text message from her saying 'car is broken down/fridge is broken/haven't got a birthday present for husband' and I reply with 'have you got cancer? No? So I beat you then...' and then we both laugh.

Cancer, jobless, homeless and titless and covered in psoriasis. People kill themselves everyday over lesser problems.

Me? I laugh at how ridiculously awful my life has become. It almost makes me feel like buying a lottery ticket because surely, surely, my luck deserves a break. A big one. I'd probably win and then find out I have lost the ticket....

“All of us have bad luck and good luck. The man who persists through the bad luck - who keeps right on going - is the man who is there when the good luck comes - and is ready to receive it.” - Robert Collier