Surgery cancellation

Hi Osboz, I've seen a few similar cases sadly, have you contacted your oncology nurse, or PALS, they maybe able to help you. I can understand your concern too with your treatment finishing and a definite window for surgery, whilst it maybe unavoidable cancelling surgery in these covid times, there has to be an alternative even if it means another session of treatment, you cannot be left in limbo, it's unacceptable. Where some trusts are cancelling patients have been able to be treated in a neighbouring trust hospital who aren't so stretched, perhaps something to ask about. 

Hope you get something worked out

Take good care

Frances xxx

Totally agree with Frances . When there is a timeframe I would apply some pressure . I too would get onto Pals and your member of Parliament. Ask what can be done to keep you stable in the mean time and are they considering another location . 
Our helpline might have a few suggestions 0808 808 0000

Hoping this situation starts to reduce in the next few weeks .

Take care ,

Court 

Thank you for replying, Frances. I know I am far from the only one and that there were many people caught up in the same problem during the first lockdown. I think, or hope, that some lessons have been learnt by hospital administrators after that experience.

I have a phone consultation booked with the surgeon next week which was arranged to answer some questions I still had about the operation, but I hope to get some information on what is happening and what the implications are for delay when I speak to him. Depending on the outcome, I will then take up your suggestion of contacting the CNS. I don;t know about PALS, but I'll look them up too. Thanks for those!

Just read your message as I was about to post my reply to Frances, Court. Thank you. I have been good at being assertive since my diagnosis, but am perhaps being too accepting in this case. Once I have a bit of clarity from the surgeon next Tuesday I will get pushy again!

It's good to talk!

Osboz

Hi ,

I think these directives come down from the top . I am sure your surgeon is frustrated too but they might be able to give you more insight into how they are managing it . 
Wishing you every success and let us know how you get on .

Court 

Hi Court,

I agree that the surgeons must be tearing their hair out with these delays. They are certainly not of their making, as the decisions are made higher up the food chain,

I will keep you posted. I have also just emailed the hospital's PALS service, having googled what they are!

Thanks  to you and  Frances for the advice.

Osboz

Hi Osboz

Just wondered if you had made any progress with your team ?

Hope you have and things are lined up for you .

Court 

Hi Court,

Thanks for asking. No progress at all unfortunately. 

I did speak to one of the surgical team last week, who was sympathetic but could give me no information other than to say they are trying hard to move things forward including re-looking at contracts with  private hospitals. I also clarified that if the wait is more than a few weeks, there are potentially significant implications for my condition - ie cancer spread and/or growth of tumour and thus probably an even bigger op to come  and more chemo

I emailed PALS as suggested, got no response at all so re-sent email, but still not a dickie bird!

My plan is to contact the surgeons' secretary in the coming days and maybe the CNS as well. I don't intend to be too patient!

Thanks for your concern - it matters a lot.

Osboz

Hi again, 

Curiously, I just had a call from PALS apologising for their lack of response to my emails. They have agreed to chase things up with regard to my surgery. Let's see if anything comes of it!

Osboz

Interesting. Well let’s hope they want to make amends by vigorous representation!! That would certainly work in your favour . 

Hope it’s soon too or you might want to get transferred up to Scotland . .

Take care ,

Court 

Hi,

Another disappointment - I had a new tentative date for surgery on 19th Feb which was going to take place at a private hospital. This morning I heard that they cannot proceed as they had no ITU or HDU bed available for me

I knew this was a possibility and tried not to get too fixated on the date, but was so upset nevertheless when I got the news today. Another delay, more waiting and, most important of all, the worry about what risk does this poses in terms of the cancer. My treatment finished on 16th October - almost 17 weeks ago.

I believe the surgeon is doing all he can and is fighting my case. He's currently trying to negotiate with a colleague to use some of his theatre time, but it's hard to be positive after being let down twice already. I think they are only able to use this one hospital for surgery as the NHS hospitals in the area are all full of Covid patients.

Incidentally, PALS have been useless! I never heard back from them and it's been over 3 weeks since I spoke to them and they agreed to investigate!

I just needed a place to express my frustration and upset at this recent turn of events. It's so helpful to have this space to do so.

Slightly more positively - I had my Covid vaccination a few weeks ago!

Thanks

Osboz