I met up with my surgical consultant Paul O’Loughlin and had the ‘big meeting’ I had spoken about in the previous blog.
I had been advised/Pre-warned by friends that he can be quite direct. However, it wasn’t more than a few minutes into said meeting before I was a puddle of tears. Not so much Paul or the way he delivers news but more the news he had to deliver.
I really did feel that he wasn’t prepared for the meeting at all. I am sure I have said this before but, it’s like they don’t read the notes at all before a meeting. (This is what I feel, not fact)
He led the charge with, booking me in for an operation in January without discussing it with me. I wasn’t happy with this at all, January is so far away. I have been off Chemo a month now! What’s grown or come back since then?
Then his explanation of how it was going to go ahead. *(I will come to this later)
He didn’t know that I hadn’t had radiotherapy. Surely that would be notes.
A lot of what he told me was due to not being able to speak to my oncologist because he was missing from the department heads meeting. He had to call him to ask him a question during the meeting, Why not do that before the bloody meeting.
Yes, I understand I am not the only one covered by the NHS. They’ve had 4 weeks to speak to each other since I stopped Chemotherapy. It always feels so last minute.
So what’s been agreed on:-
I am having the big operation on the 10th of December, (Pending physical) a week past my 42nd Birthday.
They’re. Taking. Everything!
- Parts of the bowel
- The whole rectum including the bum hole.
- The lymph nodes that supply the blood to that region
- Anything that the cancer has spread to
- They then sew me back up.
- *(in his words) ‘Flip you over’ and then connect the bowel to my stomach wall and fit the stoma.
It was a lot to take in at once. No preparing me with, “Listen Cam, we’ve had a look at the images. It looks like the best way forwards is XYZ”
I just feel that they don’t give a shit, it’s the quickest way to process you out of their department. Again, I know I am not the only one on their books, I do but I just feel I was all decided prior to me going for the meeting and that as my friends has warned me. He is too direct for my liking.
I just… I felt, that due to all the good news in the previous meetings and the results I was shown that I was going to get away with a temporary stoma for a bit, they would remove the tumour and I would heal up a bit and they would reconnect everything down there and I would be able to go back to leading my normal life.
It just wasn’t meant to be. I tried my hardest to put a brave face on it, but again, it wasn’t meant to be.
Paul’s explanation seemed to be so different from previous explanations. It took me so much by surprise, it was just so much so quickly and it just crushed me.
I always took away from previous meetings with other doctors that the tumour was so much higher up in my bowel, it was in the final bend of the lower intestine, not right near the anus.
Is there any point in even speaking to my private health care doctors? Aren’t they going to say the same thing?
This surgeon Paul is supposedly one of the highest rated surgeons for colo-rectal in the country. Am I just lying to myself here?
Also, I have to have a physical tomorrow to see if I am actually well enough after chemotherapy to have the operation. If I fail the physical it will be pushed for the new year. This was their original plan.
Oh my lord, I am just in bits about this. It’s just the end of normal life. Much as you’d think that it would have changed so much from diagnosis or even chemotherapy etc, but not really.
I mean, Yes… I have been very ill but it was all temporary. This is just a whole new level.
I know you’re all going to say “Yes but my XYZ has a stoma and they live a normal life” and I know you think you’re helping but you’re not.
Because I don’t see it your way or their way. They don’t. They live a completely different life. Normal to them because they have adjusted.
It’s not the life I ever envisioned. A life that I had false hope I wouldn’t have to live. It’s just so awful news to me, that it… It broke me. I haven’t been the same since. I just tear up even writing this right now thinking about it.
I have 14 days left, two whole weeks left and my life changes forever.
I am perfectly aware that it’s going to save my life. I just don’t know what I feel anymore. I can’t stop thinking about it and then I just break down. Jesus, I am trying to put a brave face on things but that’s where I am at.
I’ve received a lot of messages from people asking for an update and I am sorry its so late, I promised it Saturday but it has taken me from Friday until now to be able to put it down in words. I’m sorry but I hope you understand.
Even as I write this I feel so ungrateful, I am most certainly not trying to be ungrateful, but I cannot change the way I feel.
I know that there are people all around the world that do not have access to this life giving care and they’d have every reason to call me a brat for this.
I guess that is the reason why I have to go through this. Well… That and the fact that the alternative is ‘Or die’ slowly and painfully.
I think I have more or less covered it. How I feel about it I mean, it’s weird. I have my ups and downs but it’s more or less ruined Christmas too.
The longest Paul has known someone be in recovery for this is about 2 and a half weeks. Had I have had radiotherapy on their tumour the skin and flesh around the area would take so much longer to heal. I have that going for me. However, if it’s two weeks or just under, I would be looking at Christmas eve or just before when I get out of hospital.
Kerry loves Christmas, I just don’t want to ruin her Christmas. I have this rule about having my Birthday before putting up Christmas decorations etc. I am going back on this now. I want to feel the Christmas love before going for the operation.
I hope to be up and around for her 30th Birthday in January. Christ, I want to be back to work in January. We know there will be more operations for the mets in my lungs, but that surely will be the end of it. At the very least for a while.
I am in the process of jumping through all the hoops that the DWP want me to for the P.I.P. I swear most of the pages just repeat themselves.
The pills from the London oncology clinic and the cannabis oils can keep doing their job too.
I’ve put a lot of weight on of recent, I think I am close to about 14.5-15 Stones again, I really had given up a bit of recent. I noticed I hadn’t showered or shaved in about 4 days. I stopped coming to bed. I was dozing off during the day time and I stayed up all night. Not on my computer, I was actually watching TV. (Go me eh?)
Actually though, No! Not even in the slightest, I have had to stop feeling sorry for myself and pull my socks up and get back into good routines.
I still feel like an utter ‘scatter brain’ I couldn’t remember the word cushion the other day. I had to describe it to Kerry as ‘That thing that you put on a couch but you sometimes sit on’
It’s laughable, I even laugh about it sometimes. I am really sorry if I pull a right face at any of you when you finish my sentence, it’s just super frustrating.
I guess that’s it though, I am frustrated. Bored that’s for sure. I keep feeling this ‘Why me’ feeling. I sure as shit haven’t followed the Kübler-Ross model. Or if I have, it’s certainly not been in the order that it suggests.
So, I have a date with the PIP forms for the DWP. Looks like I need to scan in a whole bunch of documents that they could easily ask my GP for.
C’est la vie