Waiting for surgery

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In brief diagnosed with rectal cancer after a colonoscopy in August 2024

all my treatment meetings will be at QA Cosham and I travel from the Isle of Wight Eventually started chemoradiation therapy 18th December to 24th January a few rough days travelling on ferries but survived treatment with some side effects last 10 days of treatment and for a further 2/3 weeks after treatment.

At this stage I have only had three face to face appoints 1. Consultant who told me I had cancer 2. The consultant who we met to sign agreement to treatment but had previously only had time for phone consult 3. Oncology nurse who gave me my chemo drugs.

obviously I met the the radiologist daily and had 3 reviews with macmillan nurse - never the same one.

i have struggled not having a named person to talk to .

An oncologist consultant not the original doctor did a phone consult with me. Very hard to describe all you are feeling going through when speaking on the phone 

After treatment I had an MRI and Ct scans in April on the Island followed by another at the QA

finally had another phone call from the consultant who said I have now been signed over for surgery this was 24/4

I met with Prof Shah on 3rd May and will be having an resection and stoma 

when asked time line he said 4/6 weeks or sometimes earlier if he’s had a cancellation at last it’s been a long wait to get to this stage.

today for the second time I have tried to contact the colorectal nurse who attended the above appointment with not being able to talk to her.

I have phoned admissions at the 5/6 week stage and was told the consultant should not have given me a timeline. While speaking to her she said I still had not had an anaesthetist appointment but I had been told I did not need to. She checked this and found I was correct so she took that off my file. I wonder if this held my operation date up. She also said I was on their priority list !!!!

we are now week 8 of waiting - admissions don’t answer their phone so a message has been left today I hope for a call back but will try and phone again tomorrow anyway 

i feel emotionally drained and my and my families anxiety has increased each day. 
I often read on here what good relationships you have with your treatment team and how quick operations happen but I feel lost and neglected and don’t know what to do next. Is this rare are others having the same happening to them.

  • Hi  

    I hear exactly what you are saying . Covid brought in a whole new approach to cancer care . Prior to this every single appointment my mum had since 2009 was in person . I even have read of people having their diagnosis being given over the phone .

    Some of it I find easier  as I does cut down the hospital travel with my mum and she is older now but if I was not there filling in the parts for her I don’t think she would have navigated the system as although everyone was wonderful it was a different person a lot of the time . It is a big specialty with a lot of service users but it does mean that there is no continuity anymore and I think that’s sad . Throughout the 15 years of input my mum’s oncologist would catch up every four or five visits and that helped .

    By far most people do get a pre assessment appointment with the anaesthetic team to go through a fitness for surgery test . I have not heard of that not being done unless they have already done it .

    Surgeons like to wait at least six weeks from treatment to let the body recover and get the best post op results too .

    Around holiday times things do slow a bit and you do see a few weeks drift by . But I would also say surgery can suddenly be sprung upon you like a phone call to say it’s next week so I would also get your bag ready .

    All that you have described, the uncertainty, the lack of control etc does come up here a lot .

    You should however be able to get in touch with your team . Each hospital has a unit called PALS to help out in situations just like this and they will make enquiries on your behalf as it really can get too much recovering from treatment and having to push a system too . 
    If you Google your own trust and Pals it should point you in the right direction and maybe it’s time to let others advocate a bit for you .

    Well done on enduring ferry crossings with treatment. I am in Scotland with a lot of islanders coming over to get treatment too and I always admire their ability to handle the ferry crossing after it . 
    It can be very frustrating. Our helpline team would also be happy to chat this through with you . 0808 808 0000.

    They could also chat through counselling options if you think this might be of some help .

    Take care and I wish you every success with your surgery and recovery .

    The isle of White is on my list of places I would love to visit .

    Court 

    Community Champion Badge

    Helpline Number 0808 808 0000

  • Thanks for your reply.

    I managed to speak to the admissions team today.

    Not good news really she said looking at the schedule for the consultant she said it looks like mid July is the earliest it might be. I am having robotic surgery so that narrows down who can perform the surgery. 
    mid July would make it 5 months after chemoradiotherapy so my anxieties kick in again. Mainly what was the point of having that treatment, how long before the tumour begins to grow again - will it spread. Every ache or pain scares me.

    The admissions lady agreed with me saying that cancer patients should be having surgery in the 4/6 weeks window and that I was classed priority. She is also messaging the consultant asking what the plan will be for me. She said he is good at responding so hopefully will get to hear something.

    I will talk to PALs if I do not hear back and keep fighting my corner.

    I hope you get to see our beautiful island one day

  • I was diagnosed with cancer last Aug and learned it was rectal cancer in late Sept. I can relate to so much of what you're saying.  I finished chemo at the end of March and they took until a week ago to schedule my surgery... on Aug 7! When they called to give me the date, it was all I could do not to say "are you f'ing kidding me?" 

    I too worry about the cancer getting bigger and spreading. I did 6 months of radiation and chemo to shrink the tumor enough for surgery. Now 5 months of waiting for surgery. 

    Our experience with medical trams is different because I'm in the US but overall our experiences are remarkably similar. I wish you the best of luck with getting your surgery date SOON.