Sunday……

Another bottle of wine down and I’m on here writing!

I still miss my friends, feel  like I don’t quite belong in their world as they’ve got their kids and other friends and we’re just at the sidelines and that I’m just not that kind o person that they seem to want to be friends with.

Maybe it is just me being paranoid, or it’s the wine talking but just how it feels.

On a plus side, I don’t have to see the surgeon anymore – so I’ve been discharged from oncology and surgery – now to just get on with life and nope there is no recurrence!

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27.04.2019

So, since my last post not much has changed – I’m still drinking – I know I need to stop, but feel like I don’t have much else going on to warrant stopping it.

Is this depression? Anxiety? Or just habit now? 2nd nature? Addiction?

Lets carry on and see how long I last seeing as now I’m think am I killing myself because of all these reports on links to drinking and breast cancer but still doesn’t make me stop.

04.01.2019

New Year, new start and all that stuff.

Starting the year as I mean to go on – drinking, feeling lonely, overweight and struggling to get motivation to lose weight even though I know I have to get rid of some before March, not only that I think I’d feel a bit better in myself!

Also still not getting over the fact my Mum isn’t here anymore, I know people have losses every day but I don’t get how people cope with it – it’s hard to not call her on the way home from work, or give her a call when I want to tell her something or pop over on a weekend to see her. Just feel emotional, like little things will set me off – even just writing this I can feel myself tearing up – and no, I’m not doing this for sympathy, I’m doing it as a release, I find it easier rather than talking to someone.

Well I don’t know what else to write, so maybe I’ll try again in a few days.

Random Mumblings

It’s Sunday afternoon, I’ve felt slightly bored and somewhat lonely today – even though Ben’s been in the next room. Is this normal?

I miss my friends, I know people change and grow up but it feels odd that everyone goes off in their own direction even though you’ve grown up with these people and probably spent a good deal of time with them both in and out of school.

What changes to the point of seeing them maybe once a month or so?

I don’t know why I find it easier to write this kind of thing down instead of sharing it with Ben, I think I’d get too emotional and I don’t know if he’d understand – although, I’m sure he would but that’s just me, keep things bottled up until it’s too late!

Maybe I just need to get this off my chest, who knows?!

Me Again!

I saw the clinical psychologist, and she was quite happy to say that I’m of sound mind and making the right choice, for the right reasons.

So I’ve had an appointment booked to see the surgeon up at the Berks since September now, appointment is for December 5th, so been quite happy to plod along, waiting to go there.

Fast forward to last Friday (4th Nov) when I came home from work, I’d received a letter from the hospital so I was a bit “oh”, opened it up and surprise surprise, they’d changed my appointment – given no reason, just said “it has been necessary to change your appointment from Dec 5th to FEBRUARY 20th 2017”!!

As you can tell, I wasn’t best pleased at having to wait another 4 months to see the surgeon, I rang up his secretary to find out what the hell was going on and got told “I’m sorry, I don’t know why this has been changed” thankfully, she has managed to changed the February appointment to November 30th, so I don’t quite get why they couldn’t have done that in the first place.

But if there is no real reason for appointment changes, then this means it could possibly go on a lot more, unnecessarily.

Either way, I’m still not officially sorted, as when I go to see this surgeon, I’ll have to be re-referred to the other surgeon who would do the op, so god knows how long that’ll take.

On the plus side, I’ve got an appointment in May to see the oncologist for an annual check up – had to chase for one this year!!

I know this is just a moaning blog, but I’m getting pretty sick of being passed around from pillar to post, so I have now escalated it to the PAL’s department at the hospital as it shouldn’t take this long at all!

One year on….

I know, I haven’t written anything on here for over a year, but I haven’t had a great deal to say.

I’m still waiting for my operation (still waiting for the surgeons to decide which option would be best for me – even though I already know what option I’d go for!) – I’ve seen Surgeon 1 at the Berks who advises yes, but speak to the surgeon who would carry out the procedure. Surgeon 2 (who would be carrying out the op) at the John Radcliffe has advised “No, we don’t need to take a healthy breast but can match it to the reconstructed one eventually”. So I returned to see Surgeon 1, who told me my percentage rate of recurrence and still semi said yes to my original option, but he would prefer to find out any information gained from the BOCS Study I was entered into (Breast and Ovarian Cancer Study)  to see what they say about it, as I was BRCA negative and no real history of it in the family, so that might tell them why I was “fortunate” enough to get it. So I’ve spoken to the geneticist in charge of the study, who delightfully informed me “At present we do not have anything further to report from our research study. This type of research could take several years” (This already being a year and a half since being entered into it).

Oh yeah, i also have to see a clinical psychologist at some point, to determine that I’m of sound mind and I’m making the right choice for myself! Even though, given the option I’d of gone for the double mastectomy straight away, and at least that way I’d not be wonky and not be having to go through all of this.

I don’t want to whinge about the NHS but come on – I finished all my treatment in October 2014 – surely that’s enough time for recovery and to start working on a plan of what I’m going to be having done and maybe, just maybe, setting a date for it all? The worse thing is, I’ve been speaking to other ladies who are having the same problems, I just don’t get why it should take this long to get anything done. I know the UK has a lot of people, and it isn’t just me who is going for an operation, but it’s times like these where I need to be selfish, I just want it all done so we can get on with our life properly, without having to wait around!

 

 

The choice is made…..

I went back to the hospital yesterday, to speak to the Breast Care Nurses and give them my decision on which operation I would prefer to have (as well as look at pictures of surgery carried out, talk about recovery times and other bits and pieces.)

DIEP Image

I’ve decided on having a DIEP flap reconstruction, along with a recommended preventative left side mastectomy – and then both sides will be reconstructed in one operation, which could be 8-10 hours!

I’d probably have to stay in hospital between 5 – 10 days, depending on how well I heal and how my body accepts the reconstruction. Also been told I’ll have to wear a corset (!!) for a few weeks after to give support to my abdomen, as they’d be cutting through the muscle. I’ll also have to wear a special bra to give the new breasts proper support. Recovery time after this has all happened is apparently between 3-4 months!! Can’t drive for a while or lift anything or do anything!

So the ball is rolling with that now, I’ll still have to go see the surgeon at the Royal Berks, speak to him some more and then he’ll refer me to the John Radcliffe (Where the op will be carried out) the Berks don’t carry this particular kind of operation out there as it requires micro-surgery, this involves re-attaching the blood vessels everywhere that need it!) so I’ll have to go speak to them, could also be a chance I might be referred to a psychologist to make sure I’m making the right choice and not going to change my mind (for having the preventative left mastectomy, but I think the clue is there in the wording “preventative”).

So that’s it for now, just a case of wait for the appointments to come through and then go from there.

More info on DIEP Flap