It's happening again

[bookwormcrazy]

After a really traumatic year of treatment and surgeries, my husband (we got married less than 3 weeks ago) had his first 3 month monitoring scan after being signed off, at the beginning of January.

We haven't heard anything since but today he received a text message for an MRI scan.

We stupidly allowed ourselves to be hopeful for not hearing anything because they really couldn't mess up the communication again!!

Well it seems they have and I now have a very distraught husband.

For context, we were in this position back in nov 22. The same thing happened. He was signed off after a big liver op and at his 3 month monitoring scan we didn't hear anything for 6 weeks and then he randomly got a call for a scan. After chasing MacMillan, it transpired that the cancer had returned and it was so so delayed that it quickly became inoperable and he spent all of last year back in treatment and having ops and procedures. At the time everyone was so apologetic about the lack of communication and how he found out, we were convinced that the same thing could not happen again. But unfortunately it has. He was watching a football match with a friend this afternoon when he got the text message for another scan, so he bottled it up and hit the drink. I only found out when he got home and he is so upset.

After 4 years of fighting, he is talking about stopping treatment and not being able to go through anymore. I am sure when he sobers up and actually gets the information about what is going on he will change his mind but I can't believe we are here again with the really piss poor communication. I am so angry. I know MacMillan, and everyone who has supported DH through this journey has been great but how can they get the communication so wrong twice! And at the exact same time. Now we have to wait until Monday to find out why they have booked an MRI scan in and if it's because the cancer has regrown. Until then, there is no convincing DH that there may be another reason, not after last time.

[Teasmaidavale]

I’m so sorry this has happened again, it’s really outrageous to just receive a text as the first contact! And on a weekend too when you can’t contact anyone until Monday. We’re pals involved last time? I’m really sorry you are both going through this.

[bookwormcrazy]

@Teasmaidavale

I’m so sorry this has happened again, it’s really outrageous to just receive a text as the first contact! And on a weekend too when you can’t contact anyone until Monday. We’re pals involved last time? I’m really sorry you are both going through this.

No, Pals weren't involved last time, but I am going to get on the phone to them first thing tomorrow.

[notknowledgeable]

Thats awful - praying its going to be good news though, it might not be the worst xx

[Snippit]

Definitely contact PALS. My daughter had absolutely awful communication between herself and gynae. In the end PALS was the only option and very effective.

In my opinion the biggest downfall of the NHS is communication, it’s incredulous 🤷‍♀️

[TempleOfBloom]

Oh, how awful! I mean, with all
my heart I hope the reason for the scan is not awful, but this sort of info-free bombshell dropped on you and your poor DP is awful!

Fingers crossed ongoing OP.

[bookwormcrazy]

Unfortunately we have had confirmation that the liver has regrown with the cancer. Back to square one and starting chemo again in a couple of weeks.

[FortofPud]

What a absolute disgrace. I'm so sorry you have this extra burden of the bad way it's all been handled and all the anger that must go with that.

[bookwormcrazy]

I think the worst part was that they were very misleading.

After speaking to pals they confirmed that there was a letter waiting to be sent to say - good news, no obvious signs of metastasis but there's a couple of spots we don't know the significance of. Overall - sounding a bit positive. (He's had unknown spots before on his lungs and they ended up being nothing. Then he had the MRI and after the results were reviewed they put in an appointment with a bowel consultant.

Considering the "unknown spots" were on the liver, and we were already waiting for a rescheduled appointment with the bowel consultant if everything was ok to reverse his ileostomy, this gave us some hope that it had been reviewed and they had finally decided to start looking at a reversal, which is why they booked in an appointment with a bowel person.

However, it turned out they just booked him in with the closest consultant to give him the bad news about his liver. No consideration on the impact of their process and what it looked like from our perspective. I couldn't help but feedback how misleading this was. It could have been handled so much better, but then part of me thinks after last time, we should have known better.

[FortofPud]

No no, you shouldn't have known better and this isnt on you two. There literally was no way of knowing so please don't feel like YOU should have viewed it differently, been more suspicious it was an error etc. What an awful feeling having that false hope dashed . Has this made a difference to the timescale of starting treatment this time? And is there an obvious department at fault, or is it a case of everyone shifts the blame?