Merry Christmas

Christmas Day. A lovely day. T woke up at 8.40! And was generally lovely. She got her Hot Wheels from Father Christmas like she asked!  There was an awful lot of Frozen stuff too..... Got T and P a joint present of a domino rally. The idea was good, the reality was she kept knocking them down with her dress, or with her foot, think P was getting exasperated but he was great all day. We went for a walk to the park before my parents got here this pm. That was a good thing. Went to a different park yesterday and it made my spoons/energy increase. Exercise is the key. 

Managed a full day with no rests and now it's 11.15pm and I have terrible heartburn even though wasn't overeating or doing anything I wouldn't normally do. If this is a treatment side effect then so be it. My treatment buddy Rosie, who is at the same stage as me, lives in South Northampton and is 31, (!) her sister is a doctor and says it's ok to take Gaviscon. So poor old P went out to get some from the garage. It hasn't gone though. 

This morning I called Mum on the phone, and though I see her most days, that's the first phone conversation we've had in months. Think it may have made her day. I was struggling to know what to say, so just talked. I know that doesn't make sense, but it was hard. I seem to have forgotten the art of conversation. I blurt things out when before I wouldn't have done. 

Anyway, no radiotherapy today. A day off. 

More hair coming out. Crikey there's a great big hair monster lurking in the food bin. 

New hair

Here I am with my new hair on Saturday. 

And here it is today Tuesday. 

And here it is from the other side.... Wait for it....

That's steroids for you. In terms of the fat face anyway. 

Gone.

My hair is falling out at a rapid pace. 

Last week I was tugging gently and it just came out, and it was long then. I spoke to the radiographer and she said well your face is puffed up from the steroids, it won't make much difference to just go and get it clippered if it doesn't cause your scalp too much bother. Is my scalp going to give me much bother in the next few weeks I said? Yes she said. Oh. 

So on Saturday I called Shabby Chic and said I KNOW it's the last Saturday before Xmas but can you fit me in? And they were so kind and said yes. So off I trotted expecting to have it shaved or clippered and thinking I was going to be ok with this. I sat in the waiting area which is so familiar and so many hours have been spent deliberating what to do with my hair and looking at Pinterest and then a pic popped up of Liz a Taylor with her head shaved on the front cover of Time magazine after she'd had brain surgery. And it moved me very much and I got a bit tearful. Then Jenny the hairdresser came over and she got a bit tearful. And her daughter Georgina took charge and got us some tissues and we started and it was ok. I didn't have it shaved I had a half pixie cut. One half of my head is almost bald now, but I left with the joy of having a new style! 

They didn't charge me. How very kind is that? 

Yes that is the food bin. 

It's organic isn't it? 

Going, going....

Manky hair.

Look at it. Manky. It may be the last time I put a pic on with it there though. 

Normal.

I feel normal. 

Well normalish. 

It's 7 and a half  weeks post surgery. I am getting my energy back slowly. Yesterday I only needed a little lie down on the sofa while T and P played Lego. Then we went for a walk and I didn't need a stop. 

Today I went for a walk on my own to TK MAXX. Whooooo. I managed to do some shopping too. Without it all seeming a bit much. And I recorded a pause for thought for work. And called and spoke to Carol AND IT about my password. 

So where are we? 

2 weeks into radical chemoradiotherapy. Unscathed so far. No sickness. Though am not on the ketogenic diet anymore. Managed 3 weeks. Currently stuffing carbs into my face like there's no tomorrow though making sure am getting plenty of fluids and fruit and veg too. 

Scalp hurting on the top of my head. 

Aware of bowels!!

And very aware of my hair. I am thinking I might have a problem with my hair coming out. How will it be? It's likely to be a patch of hair on the left hand side. How big? How will it impact my head? Will I be able to cover it up? All these questions running through my head. 

Oh the radiotherapy itself is simple, I go to a plush clinic every day, the same nurses come and take me through and I lie on a clinical bed, they ask me to tell them my date of birth and clamp me in to my mask. I do not like the feeling. It is hard. I can't get comfy. I am tense. Itchy. They say we're leaving the room now and put my music on. 5 minutes pass during which time I struggle internally with using the phrase 'peace and calm' from my meditation and am aware of my heart beating, thudding and the urge to swallow and move is huge. Then there's a big crescendo and I hear the radiographers coming in, they unclamp me and I sit up. Always a bit disoriented. With a bit of a localised headache. Only done 10! 20 to go. 

Don't stress...

It's been a funny few days of feeling .....funny. 

i dont know how to stop the stressing .

my head is full of stuff, lists and things to do and meal plans and got to do thises and then i had my radiotherapy mask made and i am now stressing about who to put on the rota for that as what if someone really really wants to help out but i dont ask them and they are offended, and when they say they can do wednesdays but not fridays what if i had them down for fridays and ......

Andie says she will coordinate it like she did for her dad. But its not just the appointments, its about Tilda and seeing her and managing that .

my head is aching and my heart is beating too fast. the gp on monday gave nicola and i some light relief when he was pretty much useless, what with his mumbled talk of well we could do this, but medication is addictive and youre on a list for cbt but it might be a long wait and....

then becki took me to the macmillan clinic to see the prof my oncologist and they were playing mousse t and horny in the the waiting room.

the diets going well though. apart from the waking at 4am and stressing about what we are going to eat. coconut pancakes? cloud bread?

stop stressing and relax. how?

 

i have learned that i have more energy if i am outside. and a walk is good.

i have learned that if i have a seizure then its not the end of the world. yes i had another one when clare came round after a very busy and stressy day. i have learned that i can feel them coming and need to rest  

it has been a long week and i am not any further on. i am starting to feel trapped within this diagnosis and small in this existence but then i have 6 weeks of treatment to come, and then 6 months beyond that. p says thats a state of mind. he has no idea what it feels like to be in my head, but he is trying. He has been out this week doing things, being at the trade show, seeing clients and being with people, but my life has become small and about little tasks, gettng to appointments, looking after Tilda. these are the things i am responsible for, and when you get down to those, no wonder you stress. we used to joke or get annoyed with his nan for wanting to plan everything about our visits, from the chicken to the what time are you leaving, i understand now, that gave her stress as she had nothing else to stress about. 

lack of punctuation cos of tiredness by the way.