Why I've not been about as much and why I've now gone from happy to annoyed in a few days!

Aww Gragon, I thought you was going to tell us some terrible news for a minute not that what you said wasn’t bad but could have been a lot worse. I’m just so glad your cancers still responding to treatment. I’m sure the tablets will soon make you feel a lot better and you’ll sort the parking out. 

Just wanted to respond to your post as you was so helpful to me at the start of my husbands journey, who by the way is still doing ok, well till the next scan at least. X

sueCC

Oops, sorry Sue,

Perhaps my heading was a bit much but I was really happy that I finally knew why I had been so exhausted and had a treatment sorted and then get a letter telling me that my clinic is moving.

I appreciate that there are staff shortages as a result of massive historical underfunding and that as a result changes are needed.  I have no faith that this government will be able to deliver on their staffing promises to resolve this quickly so agree that staff should be protected and used effectively.  However, the fact that the local NHS did not even consult the patients to see if this worked for them or what might make it easier is the worst bit.  Its like once again the patients are expected to make things easier for others.

Anyway rant over.  Thanks for the response,

love Gragon x

So pleased that treatment is still working and that you've found the cause of you feeling rubbish. Really hope that you start to feel better soon.

Out of interest - do you need / want to stay on the trial? If you went to Paz full time with breaks if necessary to settle side effects, could you then be seen locally?

Hi ,

I had thought about doing just that but there are two big advantages for me in being on the trial.  I'm sure that the regular cancer care nurses are very good but with the research nurses I get access to an entire team by phone, e mail or in person which means that I don't have to wait for someone to come back off holiday or be on shift as someone is always available and they are specialists in my treatment.

The other thing is that my treatment is determined by the CT scan results, This means that I can put pressure on the system to get my scan results back in time as otherwise the research would be flawed.  This means that I usually have my three monthly CT scan a week before my oncology appointment and the report (after making a complaint to PALS) some time ago is always available for the oncology appointment.  I don't think it is as bad here as in other areas but without this pressure it usually takes about three weeks to get the scan reports back.

Having calmed down a bit now I am still going to write and complain to the hospital as the lack of patient consultation feels like a return to the old days when Doctors came in and did medical treatment "to you" regardless of what you wanted rather than with you.  I will also be copying a lot of people into the letter.

However, I will attend at the hospital in Hull and see how it works out.  At least with that I know how things like CT scans and blood tests will work whereas if I change hospital I'm not sure if I will still be able to get these things locally.  If it does not work for me then I can investigate in my own time what the alternatives are and how it would all fit together.

I've had my third B12 injection now and am already not sleeping as much although if I overdo it I still crash at the moment.  After I posted and responded to posts earlier this week I spent a lot of the next day asleep again.  However, the aches are definitely improving.

All the best,

Gragon x

We all do it - utilise every spare minute on good days - then realise tat might not have been the best plan the next lol!

I can totally see where you're coming from - I'm not overly bothered with regard to pace of scan results - they're typically as you say up to 3 weeks unless a rush job is specifically requested - but then I'm not on your trial and I know that would make a difference to me if I was. And the research nurses sound like a fantastic resource to have in your corner, so why would you want to give them up?

Hopefully things continue to go as smoothly as possible for you.