Hi everyone!

Hi Val

Thanks for replying and to everyone else too. Apologies I’ve been dealing with an infection below the plate in my feeding tube, fun and games as always. 

I’m now currently being treated by the NHS in Birmingham also, mainly based at Heartlands but I’ve been to all of them at this point. Scans at Heartlands and QE, laparoscopy and feeding tube insertion at Solihull, heart tests at Good Hope and I’ve just found out I’ll be under Oncologist Dr Tsalic for chemo-surgery-chemo path, with me choosing Good Hope to have the chemo as it’s by far the closest for me. 

The only reason I’m being treated in Birmingham is because I had my private endoscopy at parkway hospital in Solihull. The brilliant Doctor (Mr Tom Wiggins) was absolutely fantastic and referred me straightaway to his colleague Ms Tucker, which sped up the process somewhat. That more or less made up for some of the time lost waiting to be seen in Stafford. 

If I had been referred in my own area (I live in a village on the outskirts of Cannock), then I would have been treated in Stoke on Trent. I don’t know what they are like dealing with cancer, but I’ve had a couple of experiences there when I broke my arm back in 2017. I won’t say too much apart from it wasn’t very good and leave it there. 

I‘ve had a fairly good experience with Birmingham so far, apart from the fact there seems to be no clear communication/cohesion between themselves and my local area. Resulting in silly things like my wound getting infected, no district nurse available or even mentioned to come and show me how to clean underneath it properly (stitches are too tight which is why it got infected in the first place). 

Can I ask what happened with you and what the delays were if that’s not too cheeky? And has your experience with Birmingham been a good one so far? 

Thanks again for the reply Val and I hope you are well. 

Dean. 

Hi Dean, 

You are not very far from me in terms of location, as I’m on the border of Lichfield/Cannock. 

When I had my first endoscopy at Good Hope in Oct 2023, they discovered abnormal and cancerous cells. I was then passed to Heartlands under Ms Tucker but only got to see her once.  All my other appointments were with Mr Nijar. I then had more endoscopies at heartlands and QE, CT Scan at Solihull and PET Scan at Birmingham City. I was then seen by oncologist Dr Gray, who works out of Heartlands and QE. 
They took until late April/early May 2024 to get a diagnosis & plan as they had to repeat endoscopy due to size of tumour being 12cm, however this was later found out to be bruising so I was given the choice of Chemoradiotherapy or chemo/surgery. I opted for Chemoradiotherapy. 

Treatment took place June-Aug 2024  it ended up at QE as waiting list at Good Hope was another 3 weeks  

The only gripe I have is that it took them 5-6 months to find out what stage of OC I’d got, then to get a plan in place.  I was constantly having to chase for information etc, and not helped when endoscopy got cancelled on the day I turned up, which resulted in another 4 week wait for the next one  

Follow ups have shown high grade dysplasia cells still present  and now yet again I’ve got a 5 week wait for an endoscopy at QE as there are only two people that do this procedure.  I feel like I’m on a forever waiting list to be seen whereas most people seem to get plans done far quicker than me  

My turn to apologise for going on

Today is not a good day for me 

Val 

Hi Val

No need to apologise at all. I have a tendency to include as much info as I can when I write so it’s always a few paragraphs, my friends are always mocking me for it! 

I’m very sorry to hear that you’ve still got cells present. I’m not too schooled on what the procedure is for that as I’m going down the surgery route, maybe immunotherapy or more chemo? 

I’m in Heath Hayes and grew up in Lichfield, so not very far from you at all which is a coincidence. 

I saw Mr Nijar initially, who gave us the good news that it is likely localised. I met Ms Tucker the day of my surgery, she performed the laparoscopy and installed my feeding tube. 

I know what you mean about the waiting. I’ve had a call saying my wash was clear and laparoscopy showed no signs of spread, but I’ve also had a pet scan in the meantime and no results have been discussed regarding that and no staging at all, so it could be better or worse than I’m expecting at this point and I would’nt know. I assume I’ll have to wait until I see my oncologist at Good Hope when they get around to schedule my appointment. 

I understand the NHS is in trouble, but I am a little miffed that these things take quite so long to organise considering that generally, time is of the essence. Especially in the earlier stages. 

I hope you get the appointments you need soon, sometimes it’s good to just keep chasing and chasing. They may be able to offer you a last minute cancellation if you’re able to get there fairly quickly. I always think I’m bothering people too much, I really have to get out of that mindset. 

Either way, stay in touch if you can and I’ll let you know so how things go my end and vice versa if that’s okay with you? We might be able to help each other in terms of contacts and who is best to get in touch with if things need speeding up. 

Keep up the good fight and thank you for sharing your circumstances. 

Dean.

Would love to stay in touch Dean.

I’m chasing for cancellations all the time and like you, I always feel like I’m bothering them. 
I cannot believe you’re on my doorstep. I’m in Brownhills so Heath Hayes is on my doorstep. 
And you’ve seen consultants I’ve seen too. 
I’m not very good at talking however today has proved that me taking the step has helped. 

Hoping for good things with you too.  There’s lots of positive stories and having a positive mental attitude helps too 

️

Absolutely and same here, I was unsure at first reaching out here but it’s proven to be very cathartic and reassuring. 

My Wife and Mom are a bit more apprehensive as the talk tends to be very real and matter of fact here, which I think is necessary at times to remove any misconceptions about treatment etc. 

The sun is shining after a gloomy start today,  which is very nice. As they say the night is always darkest just before the dawn, but the sun will rise again  

All the best Val and speak to you soon. 

Dean. 

Hi Dean, 

Thought I’d check in with you to see how you are. 
I had a last minute cancellation for my endoscopy yesterday so am feeling very sore today. 

Hi Val

Ever so sorry that I haven’t been in here, nothing bad has happened, just general day to day life. We had to get a new car because our old one was not fit for purpose, then the new one went bang the next day! Been a bit of a slog trying to get it fixed etc, but it’s finally done. Add to that the usual day to day with two young kids and two early twenty year olds and you can probably imagine how the time seems to just fly! So apologies for that. 

Haven’t had any more contact with the hospital, my oncology appointment is this Friday at Good Hope. I also finally got the proper info on my diagnosis. T3 N0 M0 since my last tests and tube operation a few weeks ago. 

Very sorry to hear that your endoscopy has been cancelled, did they give you a good reason? These things are important so they shouldn’t really be doing that without a good excuse. Also have they rescheduled? I’ve started to learn that even though it goes against my usual nature, it’s better to start pestering and complaining/getting assertive with them. As much as I really dislike doing it, it seems to get results. 

Anyway, aside from that I hope you are well, and if I’m not on here for a while I will certainly be back. I’m probably just having to compete with the usual day to day chaos! 

Again, hope you are well and I’ll speak to you soon. 

All the best. 

Dean. 

Hi Dean,

Sounds like it’s been busy time with you. Life is busy  

I don’t think I worded my post correctly, I got a last minute cancellation to have my endoscopy last Tuesday instead of on 19th March. So it was good news. And now I’ve got appt next Tuesday with Doctor at Heartlands. I do pester them all the time. It does get things moving 

Hope your appt tomorrow goes well and they give you a plan. It’s the not knowing that got to me. Once I knew what was happening, it made things easier. 

You take care 

Val 

Hi 

Sorry you are going through this .It’s a tough process to go through .

Back in Feb 2022 my husband walked through the doors of the first hospital we dealt with .Then commenced what I can only describe as a five month farce !  .Long story which included two hospital admissions , ( one for two and a half weeks ! ) .numerous CT scans , four endoscopies with biopsies ‘taken in the wrong place ‘ ( their words not mine ) only to be told ‘We still don’t know what it is ‘!!! By this stage he was in a very poor state indeed , he was severely malnourished and in pain due to all the diagnostic tests .

Fast forward to July 22 after my husband had said to me  ‘Get me out of here I’m going home to die ‘ ..I tracked down his consultant and basically said ‘If you can’t find out what’s wrong , then it’s your duty of care to find someone who can ‘ He was transferred to another hospital the same day  .It took one laparoscopy a day later ( this had been mentioned in May at the first hospital but never materialised! ) and we finally received his diagnosis of stage 2 OC .I was honestly expecting it to be far more advanced because of the time that had lapsed and his symptoms had been severe from the beginning .

To be fair we were later told it was an unusual presentation of the tumour .By this stage it was totally blocking the junction between his oesophagus and stomach so he was fitted with a JEJ feeding tube into his duodenum which was a Godsend at that time ..First bit of nutrition in five months .Then he slowly  began his fight back to a level of fitness to endure the chemo and surgery ..I honestly don’t know how he got through it all , but he did and he’s still here to tell the story ! No sign of a recurrence either two years later so alls looking good . He was a very fit and active man prior to all this so maybe that helped him too .

Twelve months later and when treatment was over I constructed a detailed timeline of the events of the previous year and called a meeting with the heads of the departments at the first hospital we dealt with. Not to hold them accountable for my husbands OC but the inconsistencies and failings during the diagnostic process carried out by people who in my opinion were out of their depth within that hospital . By the end of the meeting I had received the standard ‘Lessons will be learned ‘ and ‘We could’ve handled it better ‘ .Those words are not much comfort when it’s a man’s life at stake .! One consultant attempted to patronise me by saying ‘Well done on your persistence .You saved your husbands life ‘ to which my reply was ‘In your capacity as a specialist consultant within this hospital , isn’t that YOUR job !! ‘ ..I must add this wasn’t about money , I just wanted answers and to highlight failures within their system .I would not want anyone to go through what my husband went through within that hospital .Looking back now it was horrendous and so unnecessary . 

Sorry for the long post but I totally understand your frustrations ! I have to add though the second hospital we dealt with were fantastic and the staff were in a different league altogether .As was another specialist hospital where he had his chemotherapy. All his treatment was done through the NHS , so I’ve come to the conclusion that the first hospital was badly managed ! 

Hope all goes well for you 

J 

Hi JPM

Just reading your husband’s journey brings back the horrendous one I went through end of 2023 into 2024. And like you I complained and the standard response was, we’ve learnt a lesson. Not satisfactory when it’s someone’s life at stake. 

I'm glad your husband is doing well. 

Take care