Thought for the Week

"A hug is a perfect gift - one size fits all and nobody minds if you give it back."
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It's been a while ...

I know I have been away for ages, and this will probably be the only post for ages to come, but I thought I would just jot down a little of what life has thrown at me lately.

As regular readers know, I was diagnosed with ME at the beginning of September last year, and following meetings at work with every sick note I took in, things turned, shall we say, less than hospitable in December. Basically I was told if I didn't return in the New Year, or say when I would be returning I would be replaced.

As I couldn't say when I would be fit to return, I did return on 14th January. Big mistake. 2 hours a day first week, 3 hours a day second week... you get the picture. I'm still on 4 hours a day as it is the most I can cope with. Well, when I say cope, I mean it's the most I can do without keeling over completely. Continued meetings at work piled on the pressure to commit to more, or be paid sick pay for hours I had actually worked!!! I won't tell you what I said to my boss at that point, even in print it's not very pretty, but suffice to say, after 2 VERY strong letters from me, the pressure was removed by the owner of the business, and since then I have been in Coventry.

Going back to work has caused a lot of physical pain, which I suffer with every single day, but the tiredness I have come to terms with, and work around quite well. I have just learnt that I cannot make any plans, at all, cos I never know what I'm gonna be capable of from one day to the next. Shit, if I were a dog, I'd have been put down by now .... come to think of it ... lol

Seriously though, I don't want sympathy, I just wanted to let you all know that I haven't been put down yet!

On another note, I am worried about my eldest daughter. I know Laney knows about her past medical history, but I have never blogged it. At 14, following a visit to her GP, she was admitted to hospital as an emergency, with suspected gall stones/ovarian cyst with a request for a scan. The young, very young, houseman that dealt with her decided her description of the torturous pain she was in was related to her hip and ordered an x-ray of it. When that showed no abnormalities, and the IV painkillers had done their job, he sent her home.

One month later, she was rushed back in again, with the same symptoms. Reeling in pain and screaming at me to help her, she was given morphine and sent for a scan. Result - a large cyst the size of a small melon. It was so large that they couldn't tell if it was attached to her ovary or to some other structure, and so she was prepared for theatre with both the surgical and gynae teams scrubbed up. After opening her up, and finding it was ovarian, the gynae team took over and removed it. Unfortunately, it strangulated the ovary by this time and they had to remove that too.

6 years later, she had more similar symptoms. Visits to consultants, and more than one visit to A&E later, she underwent another operation. They tried keyhole, to drain the cyst, but there was too much scar tissue and so they opened her up again, and cut a hole in it to drain and deflate it. That was two years ago. At her follow up appointment she was told that the damage already done to the cyst, and the scarring, may mean she would find it difficult to fall pregnant by herself.

They continued to monitor her, with a scan every 4-6 months and followup appointments. The second scan she had showed yet another cyst developing. They watched it, hoping it would burst on its own. When it didn't, and was still growing, to protect what was left of her ovary, she was scheduled for a procedure to aspirate it. (Using a very long, fine needle, up the watsit, and drain the fluid off). After she had booked in, the top radiographer scanned her, and decided she thought it wasn't a simple cyst (liquid filled), but that at least part of it was dermoid (solid matter), and as such wouldn't be able to preceed. She sent her for an MRI scan, the results of which we received from the consultant a couple of weeks ago.

It is a dermoid, and she will have to have another full operation. He warned her that although they would leave as much ovary as possible, to avoid the menapause, there was a very high risk that it wouldn't be sufficient to get pregnant and that she would need donor eggs.

The bottom fell out of our world.

I explained to him that she was currently at college on an Access course, and in September would be starting University and asked if it were feasable to schedule the op so that the 6-8 weeks recovery time would be over the summer holidays. He said it was, which was a relief. Is bad enough she has to go through this, but to ruin her chances of getting her degree and following the path she has set herself too would be hard for her to cope with.

I also asked him if there were any chance they could harvest eggs from her before they do the operation. He is speaking to the fertility specialist about it and we have to wait to hear, although he did say that even if they agreed to treat her, the cyst and the scar tissue may make it impossible to carry out the necessary procedure. A double edged sword. If they can't harvest eggs, she carries little chance of conception, if they can, I guess the time schedule goes out of the window and she won't be able to go to Uni.

Life's a bitch.

12 comments:

Neva said...

I can NOT even imagine your daughter's pain...I hope all goes well for her and you.....

Elaine Denning said...

Oh Ali, what a shit time you're having...and now I feel awful for not being in touch for so long.

I won't write too much here - I'll email you - but I just want to say that I have my fingers crossed that the fertility specialist gives the go ahead and it all goes smoothly. I know it means she'll have to put uni on hold, but that's far better than the alternative, isn't it?

Sending you...and your daughter...the biggest of hugs. xx

Ali said...

Neva ~ thank you.

Laney ~ you have been in touch, I still owe you a return email. Keep meaning to give you the run down on HIM and his antics, but just havent found the time. That's really bad of me isn't it.

Elaine Denning said...

Bend over.

SLAP!

xx

Akelamalu said...

Oh your poor daughter! I'm keeping everything crossed for her and will send Reiki, if she wants to accept it.

I got so mad reading about how you have been treated by your employers. I would be tempted to leave and claim constructive dismissal. I hope you have documented everything they's said and done to you?

Ali said...

Laney ~ I've been 'badder' than that... can I have another one please????

Lady B ~ I do miss blogging, and all my blog friends, hopefully it wont be too long before I blog again.

Akelamalu ~ Thx for your thoughts, I'll let you all know what happens in due course. Re employers, yes I kept a proper record, and verified the last few meetings by letter etc.

cathy said...

You are having such an awful time it is hard to know what to say. I hope you and your daughter both see some improvement soon. Please keep us imformed if you can.
here's wishing you the strenth to deal with adversity.

Mike said...

That's really shit Ali. I'm sorry to hear about everything.

Can I just add, who is HIM? and who's spanking who here?

Ali said...

Cathy ~ no comment necessary, but I do take comfort in the fact that my friends still drop by, even though I'm not often here.

Mike ~ HIM is someone I talk to Laney about, but due to the public nature of this blog, I cannot say too much here..... and Laney was spanking me... do you feel like you're missing out??? lol. x

IT Barman said...

Hi Ali

Sorry to hear about the crap times that have been going on.

Big hug (((((((((Ali and Daughter)))))))))))

cathy said...

strength too!

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