Endometrial cancer - Total disbelief!
The consultant, Mr A, calm, clear, sympathetic and measured, explains the next steps: MRI (but given a choice of CT as some women get claustrophobic with MRI), Chest X-ray, then total hysterectomy with bilateral salpingo-oophorectomy. The cancer apparently looks quite well-differentiated. To the consultant’s surprise, I ask to see the images – I’m now thinking of getting a copy and having them framed. My concerns – all about my husband. He has Parkinson’s, young onset, has now had it for several years, even though he still has years to go before official retirement age (never knew prior to his diagnosis that younger people could get it and his GP originally told him he just had Repetitive Strain Injury, such a massive mis-diagnosis). He cannot cope on his own and I had to stop work a few years back to become his full-time carer. What time frame are we looking at? How long will the recovery period take? Is there any help available? How will he visit as he can no longer drive? Has he been able to process this information? Is he OK? Will this cause him to have a massive panic attack?
Our son is at university studying Medicine, and it is now the start of his exam period. I cannot tell him. It would be so unfair to ruin his chances of good results. I really need to tell him. I need him so much. Just be brave!!
The specialist cancer nurse had not been at this appointment, but the consultant provided me with some info booklets and gave me her contact number, telling me to get in touch.
Vaginal ultrasound appointment cancelled – now I’ve had my diagnosis and it has all got to come out, the ultrasound is no longer required.
Sleep is elusive, I drift off as I’m so shattered only to wake again a short while later. My head is pounding, my brain a tumult of emotions, will not let me rest. So, so tired, completely washed out. The pattern repeats. How I hate 3.00 a.m. and 4.00 a.m. and 5.00 a.m. Not very keen on 2.30 a.m. either.
My husband has been so good. He’s been trying his best to give me some support. He finds it really difficult as he cannot manage to do a great deal, so even a cup of tea is greatly appreciated. Empathy is also a struggle, he has improved on this front since he was diagnosed with Parkinson’s. Prior to his diagnosis, he was never ill and couldn’t understand how anyone else could be for more than 5 minutes!! All the stress is taking its toll on him, he is beginning to find it all too much, and so his Parkinson’s symptoms are getting worse.
Facebook is wonderful when you don’t feel up to talking. Just a quick message to a few close friends initially. Lots of support and love in return. No need to reply straight away. It’s also OK to chat at 3.00 a.m., often my darkest hour.
OK, now I’m ready, ring the cancer nurse, just to introduce myself:
“You’ve been told that your op is going to be at Hospital X, but we can do that operation here at Hospital Y, so I’ve re-arranged that for you. You can have it on June 3rd.” NO. Son is still at Uni doing his exams and I’ll need him back home first.
“I’ll see what I can do – how about if I can squeeze you in here on June 17th ? Mr D would be your new consultant. It would be much closer for you.”
Not too sure really.
“I’ll book you in for the June 17th then.”
“We do hysterectomies here all the time.”
“Have a think about it and let me know.”
So fragile. This made me so upset. I cried, really cried for the first time since the diagnosis. I didn’t want to change to a different consultant – Mr A is a highly regarded, top guy in this field - and the hospital he’d specified has a specialist gynae cancer centre.
After calming down, I tried to ring the nurse back. She only works part-time and so there was no-one available to talk to about this. I tried to contact Mr A’s secretary at this hospital, but again no reply. I then tried his secretary over at Hospital X, where my op was initially supposed to be. Great, I got through, explained the situation and got the op re-arranged again. So now back where it was supposed to be all along and no change of consultant. So relieved!!
After a few days I pluck up the courage to ring the nurse again. She is aware of the changes I’ve made and seems fine, as she says the decision is ultimately mine. I apologise for any inconvenience, then proceed to ask about the appointments for my MRI and chest X-ray as nothing has arrived and they need to be done quickly if my consultant is going to have the results ready for my next visit. She investigates and informs me that the chest X-ray request has for some reason been sent to a small local hospital, but no-one knows about the MRI, it has apparently gone missing.
I start to receive several NHS letters; cancelling my appointments with my consultant and the pre-op assessment and issuing new appointments for the wrong consultant and giving me a new pre-op date. Along with these I receive a letter about attending for a chest X-ray, but still no MRI date.
How I just love NHS admin.
Finally, after a few more phone calls, I get it all sorted. Ignore the cancellations and keep those initial appointments. Disregard the new appointments and the X-ray one too. I get a date for the MRI and I’m told to just ask for the X-ray to be done at the same time.
Just to spice up my life a little more, as I’d had a couple of infections in my left breast recently, and had had a small benign lump identified in the same breast about 18 months earlier; my GP arranged for me to have a mammogram, see a breast cancer consultant and have a breast ultrasound. The appointment for this lovely trio was early on a Saturday morning, in the week between my other hospital visits. The radiologist is a really lovely bloke, knows a friend of ours as he is a senior radiographer, and has also known my gynae consultant for years. Nothing but praise for the gynae guy, but as he tenderly runs his transducer over my breast searching for the offending mass and any changes, we swap embarrassing stories about our friends. Luckily all was fine in the breast department – hurrah!
MRI day: unsure about this as I am a little claustrophobic, but there is no way I can wimp out. My husband had one a few years ago to check if he really had a brain!! Actually to check for a brain tumour, as this possibility had to be eliminated prior to his Parkinson’s diagnosis. He had found it un-nerving and extremely noisy. Fortunately for me, I never fully entered the enclosed space, going in feet first. Classic FM soothed me and I kept my eyes closed throughout. All in all a relatively relaxing 45 minutes. Then off for the chest X-ray and a scant few minutes later headed home.
Cannot believe just how tired I am.