Hey all. I've just had my wide local excision of the main vulvar lesion and a further 6 less scary (still all are abcde rule positive mind) looking lesions surrounding that one. This was done 4 days ago. I've just now had an NHS app message with my follow up appointment with my gynaecological oncologist, it's 3 weeks today. I've a lengthy list of symptoms indicating it'll be bad news, both a dermatologist and a gynaecological oncologist are confident it will turn out to be the big C, I've a brain disease diagnosis back in January that 63% of the time later discovers an unknown malignancy to be its cause, etc. So many things pointing towards the results I don't want. But now I'm wondering, this appointment, 3 weeks away. Is that standard, or does it mean they've tested and got the result and it's not malignant after all and 3 weeks they're making me wait because no rush no urgency because nothing to worry about, is the 3 weeks confirmed appointment just standard to get me booked in with all being well everything tests results MDT report to oncologist will all be done within 3 weeks, is it a bad sign if it means yes they've got results already it was definitely obvious no doubt about it 100% malignant so testing was done and dusted quickly? My mind is racing obviously any help would be really appreciated. Thanks all.
You just do what you’ve got to do with what you’re faced with. I’m not a quitter, and I’ve tried to maintain a good attitude and deal with one day, one thing at a time. I have a tendency, still, to become easily overwhelmed and very anxious, so I focus on the day and not what the future might hold. No-one knows, so I try to deal with what I know now, and that’s my way of coping. But thank you so much for your lovely words-I appreciate that greatly,
Sarah xx
It’s a pleasure. I have just finished watching mindless rubbish on tv, so am heading to the land of nod myself.
I hope you sleep well and are not too uncomfortable.
Sarah xx
Hi Rayner89xoxo
It’s good to see your name pop up again, but so sorry to hear about everything that’s going on for you.
I see the Sheffield Ataxia Centre is one of only 2 specialist centres in the UK- I had my surgeries at the Royal Hallamshire and I didn’t know the Ataxia Centre was based there. At least you are dealing with an expert with the right knowledge and can hopefully get some progress now.
Things just take ages-we are dealing with Bupa for my partner and it all moves very slowly, although a little better than the NHS for some things. Still involves a lot of waiting, miscommunication and 2 private hospitals in Sheffield.
Hope your Nuffield appointment goes well for you-keep me posted on how you get on.
Sarah xx
Hi Rayner89xoxo
Sounds like you’ve had another good appointment at Leeds, but I know I had to lower my expectations of how quickly things are done in my own experience going through my cancer.
I assumed things would happen much more quickly than they actually did, especially while I was waiting for my exenteration surgery. Scans had shown my cancer was growing fast and was aggressive, but my gynae surgeon said she wanted the best team with her to do the op, and had to wait till all three of them were available on the same day.
You have an awful lot coming up and no wonder you’re not back at work. You need to take time to concentrate on yourself and what you’re facing. Another wait for results too-it seems never ending.
We are lucky in that we’re not dealing with a cancer diagnosis for my other half, but the private sector seems as hard pressed as the nhs just now, so everything is taking ages, plus we are continuing with the nhs orthopaedic/spine consultant, and they all seem to have different opinions!
Keep in touch and let me know how you’re getting on, and all the best for straightforward surgery.
Sarah xx
Hi
It’s really good to hear from you again! You have so much going on I’m surprised if you know whether you’re coming or going!
I’m glad you had an advocacy appointment and hope that makes things easier for you. My closest friend works as an advocate for a different organisation in Scotland, and I understand what a difference it makes to people who need it.
I struggle with my memory since I had my stroke in March, and took to writing everything on a big whiteboard-all my appointments etc. I can find it difficult to deal with things on the phone and my writing has deteriorated-I was completing paperwork for the DWP last week (time they went properly online!) and was actually embarrassed at how bad my writing was. I still make errors writing online but it’s easier for me to amend and check things multiple times.
When you do ge the social care needs assessment, don’t try to be a hero! We were referred for one by the social worker dealing with the assessment for my in laws, but we didn’t go further with it-my partner thinks we can cope (which is not entirely true) but others need more support. You definitely need some help with everything going on and having a young child.
I’ve been ok since we last chatted thanks-trying to get a different kind of wheelchair instead of my mobility scooter is my current challenge as I’ve had to give up the scooter since my partner cannot lift it due to the spinal problem. Things are moving slowly with that but the consultant at the private hospital in Sheffield will be doing another mri guided injection into the spine in January. The worst thing is the pain, which very little relieves, and we’ve been told that it’s at least a year to see improvement which would take us up to May/June.
I am hoping to be able to go to a power assisted wheelchair which is much lighter and easier to manage than the scooter, but waiting to hear if that will be approved. It’s tough being completely housebound-I actually used to enjoy a trip round the supermarket just to get out and feel normal but that’s currently impossible. Imagine looking forward to a trip to Asda as a treat, but it was!
Christmas will be quiet for us-my in-laws and my stepson will be round but my mum in law has dementia which is progressing and my father in law is still quite frail after his cancer surgery last year so they won’t stay long. Ever since my cancer treatment finished on Christmas Eve 2018 we stopped with Christmas and putting the tree up so things have been in the loft since then! We’ll just have a nice relaxing time being at home over the holidays.
It should be my last gynae follow up in February before being dischargd, as March will mark 5 years from the surgery for my recurrence, so that’s a milestone to celebrate I hope!
Have a lovely Christmas-having a little one automatically makes it more fun- and I hope you’ll keep in touch and let me know how things go with all your appointments if you can. Look after yourself.
Sarah xx
