Saturday, 26 November 2011

2011 - 26th November Last Christmas...

Again I've bought the kids presents a month early and because they're electronic items which must be tested they've had them early. It's also because I never know how I'll be on a given day especially now. Besides one is a phone, they're in their late teens and they'll get presents from others too. We'll still be glued to our gadgets on the day anyway and I get an extra month of seeing them with shiny toys that I can only afford having cashed in most of my pensions.

Other people probably go on spending sprees, holidays.I don't know. Me, I've been living pretty frugally and trying to pay as much of my mortgage of as possible, looking at cheaper houses so I can be mortgage free. Treating my children to bike riding and car driving lessons plus a bike and car taxed and insured for a year is making me much happier than taking off on a holiday. My son's face when he first came to see me without the bus journey and 2 mile walk from the bus stop, my daughter's excited email about her first driving experience, all things I wanted to see. Who knows how old they'd be before they could afford it themselves? I was 32 and still put it on credit. I want to do so much more for them myself but soon enough they'll have the huge responsibility of their inheritance and have to decide how to spend it. I can only advise them now and hope they don't waste it or let it ruin them.

On the subject of time, my oncologist told me and my son this is most probably my last christmas. My youngest child held my hand while I cried. He's still 16, took the news calmly. Dr Tom apologised if it was a bit harsh. He's never talked like this before. He suggested I take a break from the poison back in May because it was making my life awful, giving me more problems, no relief from pain. I had no symptoms from which it could give me relief from. In September we discussed possibly returning to my original regime but a low dose and/or Cetuximab for which he had some of my tumour sent away to be tested for my K-ras status. When I saw him last week he said he doesn't want to put me on the same drugs again. Quality of life is his priority for me now. My CEA is romping away, now over 600 but apart from being weak, plagued by new or worsening pain and a persistent non-productive cough, I'm still better than when on chemo. I've had 3 lines in my arms for up to 7 months and I have a stoma plus pain patches. I'm sick of only being able to get parts of me wet in the shower. He suggested tablet form of 5fu which I've been terrified of since a friend's dad died in that hospital as I had my first major surgery - I was told because he was on tablet form chemo which had such a strong adverse reaction in him, had he been on IV they would have stopped the transfusion. Dr Tom told me they are not the easy option, they can still kill patients from side effects, they're just more convenient. I know this already but have tolerated the IV version so I'll take the chance - I'm not trying to save my life any more. I'm having a scan next week to see if there are any imminent threats to me for the next month or so. He wants me to have a good Christmas with my family (me and the kids then).

I told my daughter the next day, sat in the car waiting for her bus home. I had no intention of letting her on the bus but had been unable to tell her all day. She's planning on going to Uni next year and to move in with me, to "look after" me in July. I know she must have thought I'd be around for another few years and to have to crush her plans whilst telling her she won't have me either is the hardest thing I've had to do in a long time. I bawled an apology, she sobbed it's not my fault. I'm sorry I have to leave her and her brother so soon. We email sometimes several times a day, its easier than talking sometimes. I'll never be ready to leave them no matter how much pain I'm in. I hope she still goes to uni, can move in with her boyfriend of a few years when the time comes.He'll look after her. But my son? I hope his dad keeps looking out for him, it'll never be what we have. I'm the only one, maybe girlfriend excepted, who he'll lean on snuggled up in a blanket (all 6'3" of him) and let me stroke his hair like I did when he was little. He still gets me to cut his nails, a weekly event as children. I'm so incredibly happy he was finally able to let go of what kept us apart almost 3 years (it seemed he struggled with me being very ill again all of a sudden after my reversal when he thought I was all fixed) but he' still my baby. He stays all weekend, visits during the week. They really make me feel so much better just by being in the room. I think a small part of this great universe is a better place for me bringing these lovely people into it.


Tony Songhurst said...


That was one of the most powerful, emotive entries I have read.

Those beautiful words which will be left behind when you are gone will live on for people to read.

Why is this world so unfair, my daughter who is also sixteen is as vulnerable as your son. She is a big softee which I want to be around to give her hugs like I did for her elder sister when she needed it.

I am so happy that you have them with you so much now, they certainly sound like nice sensible and lovely individuals. I often think of my mortality, I have always done even without the cancer and thought that once I die that is my name gone...I am no scientist or politician that people will remember several hundred years later, however like you I have two lovely children who are my legacy and my gift to the world.

Not much more I can say and absolutely sure my ramblings wont make you feel better about things so will leave it there with a thank-you for allowing us to share your thoughts and to read the most personal parts of your life.

Much Love

T xx

Carole said...

Hi Lisa,

I've thought about this message for days now and I can't think of a single useful thing to say.

Just wanted to send you a huge gentle hug and let you know I care, lots.

Bastard cancer!!!


Loopy said...

I know Carole, I felt the same reading your recent news. Nothing will change the facts but something from those who count and understand at least makes it a bit less lonely. This is so hard on us all. So many children affected. But I think we can say, by being open we're giving them the best chance of coping with what will follow and the rest of their lives.

Hope you are pain free (I'm struggling right now, it's all I think a out).

Lisa xxx

Tony Songhurst said...

Hey there,

How are you doing and what is happening to ease your pain?

I do so hope you feel a little more settled as I am sure you do too.

Tony xx