Almost 6 months post op,all clear but still not had follow up

Hi everyone,

Im just wanting to offload… i was given the all clear beginning of july this year following a radical hysterectomy and lymph node removal after adenocarcinoma 1b1.

My consultant said it was important that this year i was to be seen every 3 months and my first follow up was october. I let October slide as i understand the nhs are busy so i rang them in november. Firstly i was told i wasnt on the follow up list then my mcmillan nurse spoke to my consultants secretary who said why did i think i was getting a face to face appointment and id be at least waiting till the new year.
Firstly i feel really low about this, i feel like ive no support, ive struggled with my bowels and urinating which ive sorted myself as im a nurse therefore gone through collegues but why should i have to… please can i have some input on other peoples post treatment… im honestly sick of chasing professionals for my care… am i being too naggy or maybe im just aprehensive… ive not even been examined since my hysterectomy.

Sorry for the moan im trying really hard to get back to a somewhat normal life…

Hello I had a a RH and lymph node removal for 1B1 in January last year.

I’m sorry you’re not getting the support you need. You shouldn’t have to be sorting things out yourself, especially if you’re having issues after the surgery.

You aren’t being naggy at all! And you aren’t moaning. You have been through a major surgery and cancer - that’s a lot to deal with. Please be kind to yourself and don’t feel that you’re doing anything wrong.

I’d definitely get back onto your McMillan nurse and explain that you’re not being offered regular follow ups. Ask her to explain the process at your Trust and clarify what you should be expecting. If you’re not getting what you should be, ask her to pursue it from her side. It’s also worth going back to your GP for help as they might be able to nudge in your behalf too.

The McMillan team can also put you in touch with any mental health or other support you might feel you need. Please don’t be afraid to talk to them.

In terms of my own treatment, I had a post op after 8 weeks and then I’ve had follow ups every three months. They were just booked in for me, with the next one being put in the diary there and then at the current appointment. From Feb I move to every 4 months.

I haven’t had to ask for appointments, although for my first follow up in the summer it did keep getting cancelled and moved. I spoke to my McMillan nurse and explained I was nervous about all the cancellations and she got in touch with the appointments team to get it sorted. Turns out they knew I need a follow up appointment but not for what so I was getting bumped when I shouldn’t really have been.

I hope you can get support you need x

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Aww thankyou, its awful having to feel this way… im great until i have to start chasing people up.

I did go to my gp after they told me it would be about new year before i was seen (still no appointment by the way) where i offloaded and even he looked shocked. He referred me for an ultrasound for my bladder which i have only just received an appointment through for, for next year on the 3rd so i should be greatful of that. If my consultant hadnt of said that i would be seen every 3 months in the first year then i wouldnt have expected it… i dont think they realise we hang on every word they say and yes as you say your more aprehensive initially because of what youve had and been through… im apart of many support groups and they have all had at least 3 monthhly in their first year following NED.

Does this actually get any easier?
Thankyou so much for your kind words of support, i throw myself into my job because at least i know i can nurse others the way i expect to be in all honesty and i gain great job satisfaction healing people.

Lots of love

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Although you shouldn’t have had to go down the road you have done, it’s good that you have managed to get an appointment for your bladder issues. Chasing sucks but sometimes we have to put ourselves first and make sure we don’t slip through the net. It is ok to push for what you need.

I’m a year on from diagnosis, and 11 months post op. I got the all clear right after the operation and thankfully didn’t have any complications. But it has been a tough year. I spent a lot of it very tired and my resilience is really low - I found myself getting anxious and overwhelmed really easily. I’ve done a lot of comfort eating and put on weight as a result, which hasn’t helped my body issues post op (I had an abdominal RH)

I did have some CBT but I also tried hypnotherapy which did wonders to shake me out of the funk I’d found myself in. I’ve been a better since then and I don’t get as physically tired any more.

It does get easier but it’s been a slow process. It’s taken time for it all to work its way through my mind.

I hope 2023 will be better for both of us!

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Hi Janine, I’m in a similar situation but a little behind you. I had abdominal radical tracalectomy and lymph node removal early Sept and had the all clear afterwards. I was told I would have a 3 month check, then a 6 month check to include a smear and possibly an MRI. My 3 month check appointment came through for December, but not long after the date was changed to February. I called the specialist nurse to see if this was a mistake as my 6 month check should only be a month after that (I have not appointment for that yet). She said another lady had called with the same query and it was likely due to the department being overwhelmed and the date put back. Like you, as I had the good news that I was clear after surgery, I was happy to wait so other ladies could be seen. I haven’t had the Feb appointment cancelled but I am worried this may be changed. My recovery has gone well, but I have had some bladder issues, and some spotting so like you, am keen to be checked over. Don’t feel bad to chase things up if you are unsettled, they will understand. I will be doing this if my Feb appointment is changed again. Hopefully you will get a date through soon xx