Update

That’s so rubbish Gobaith

I don’t think I’d call it crappy but I’ve been chasing appointments - or rather I’ve been chasing one and the research nurse another. Neither of us with any joy. 

The nurse has been chasing an mri scan for a week now. It’s to check out the thready growth in my thorax.  If it’s the cancer on the move I’m off the trial. If it’s the cancer invading a major artery then, well, I have no idea and see no point in going there until I do know. Meanwhile they are pumping me full of poison, possibly to no avail.  

The second is a replacement for the renal stent put in back in December. I know for a fact it’s a temporary stent that needs replacing after six months. I was assured on leaving hospital that I was in the system and they’d recall me. Being as that’s what they said last time and failed to do, resulting in a lengthy delay and a ten day stay in hospital with a kidney abscess, I was disinclined to leave it on trust. So I called and got the secretary who told me it was a long term stent and needs replacing after a year. To her credit, she’s gone through the notes, can see it’s not straightforward and will get back to me. 

Ho hum. I suppose I’ve nothing much better to do today than sit on the sofa. I did get my treatment yesterday and now feel as though I am wearing a lead overcoat. 

Whine, whine, whinge, moan. 

Xx

Oh Daloni,

I know how hard it is to move a slow system.

We hit same thing in US. My method is to put it on a calendar for instance in beginning I put it down to call at 9 in on Monday morning ( so they have higher blood sugar so you are more likely to get a yes.) When that does not work I go to twice weekly  Monday and Wednesday at 9AM. Then three times a week same time. They start to know that when the phone rings at 9 AM it’s me. Otherwise I fall between tHe cracks.

They always give up eventually as I start becoming a regular friend or pest or whatever. A case of squeaking wheel gets the grease. We are our own best advocates so whine, whine and moan when you are talking to them at 9AM.

thinking of you

Millie

As Phil has a new thread over on the lung cancer site "Treatment???"  I’ve come back here with my update on Sutton

To recap:   I was told on 25^th March they would be sending my sample off to see if I was suitable for a trial and would get the results back in around four weeks  22^nd April.

Five weeks later, 26^th April I phone them for results – they hadn’t even sent it yet

1^st  May I am assured it will be arriving at Sutton tomorrow and sent off tomorrow and I will get the results in six more weeks time –  13^th June

I emailed twice this week asking for confirmation the sample that was supposed to be with them and sent off last Thursday 2^nd had in fact been sent off – two phone call messages – issue side stepped

I emailed today, asking for written confirmation that the sample had finally been sent off and the date.   I received this reply

The lab here needed to run tests on the sample to ensure there was enough tumour content which has been done and been confirmed, they have prepared the sample with a special kit from the trials team. The courier is booked for today to ship the sample to Germany.

So assuming they actually do ship it today (not holding my breath) that will make it 20^th June before I hear anything – 13 weeks – five of which were wasted - and how long would it have been if I had not started demanding answers  ???????

the Royal Free Hampstead did this to me too, which funnily enough is why I got myself transferred to the Marsden – they filed my ct scan results which said metastases  then they stone walled me and my GP whilst they got their whitewash in place – even had the audacity to tell me the scan could be showing up house dust – seriously !

I’m now on anti depressants and am really dreading my ct scan* results on 28^th May – the day before my birthday – losing hope of having another one - birthday that is : (

* I had to DEMAND this scan from Chelsea, they didn’t want to muddy the waters between the two hospitals – no I’m not making it up

Hi Skaila

Ive come to the conclusion that these 'places of excelence' start to believe their own publicity and forget it is hard work that raises you above the norm. They stop caring and think name dropping gets results. Whatever they can only lose their reputations but they are losing OUR battles and they are the ones that matter.

Phil

Perhaps I should send them my tag. Somehow it fits!!!

Blimey

You are one strong and determined lady. Remind me to keep in your good books. 

Seriously, though. Well done. 

Xx

Hi Clare (Gobalth) I'm just writing to ask do you have a confirmed date for your next treatment now, after them upsetting you and cancelling it last week?

Skaila, How are you holding up? You are totally correct demanding a scan especially after them messing up with the bloods! I really do hope you get good results on 29th May and that will make the wait until June a little more bearable!

We have to stand up for ourselves, when we are being "messed about" no one else can do it better as we are the ones who have most to loose, no one else's life depends on it!

Hi Annette, anndanv

Thanks for asking. I made a fuss and so they gave me the treatment on Friday last week - means it was only a couple of days late. Sadly I got several stories as to what had happened so trust is a bit battered. I'm having scans next week too so we'll see what's happening. 

I've also got dates set up for the next treatment too so hopefully it'll be easier next month. 

Hope you have the sun shining where you are - it's beautiful here, all I'm managing today is sitting in my garden. Always underestimate the drugs passing through my system... 

Clare 

Hi Clare, Gobalth, Good for you, if the only way to get the treatment you need is by making a fuss, then that's just what to do! I do hope, as you say, that next time things run like clockwork! Good luck with your scans too!

Yes the weather here has been lovely. It was about 24 degs today which is a bit too hot for me. My husband is in hospital and the sun shines directly into his ward, through the windows and the curtains are very thin, so don't stop the glare of the sun or the heat coming in! The temperature gage in the Ward read 25degs at 7.30pm and none of the windows can open! Yet my husband tells me that during the night, his feet are freezing!