So today as a special treat I’m going to attempt two posts for you. This is because my afternoon today has been enriching, I won’t say changed my life but definitely deserving of a post all of it’s own. So back to last night first……
I don’t know if you have noticed at all but it’s been a little warm shall we say LOL. It deserves a LOL all of it’s own as my Facebook feed is full of you all stating how bloody hot it is! We know, it’s like people think that the rest of us might have missed it or that where they live or work is hotter than where the rest of us live! Okay rant over!
So last night in the chemo gazebo Steve, Rebecca and I watched Johnny English again as I mentioned it the other day and we had forgotten how funny it was. Rebecca didn’t finish watching the film with us due to a headache and went to bed (worried about her). So it’s close to midnight, Steve is tired and so am I. I have problems sleeping every night and I try to stay awake long enough so that I’m really knackered but this never works and if lucky, I get 3 -5 hours a night. Tonight I decide I’m just too tired and go to bed with Steve (no condom stories yet if you think that’s where this is headed). I am so tired I think I fall asleep straight away only to wake an hour later due to the storm. I gave up trying to sleep and went downstairs to watch the storm, alone in the dark.
Lightning lit up the sky for about an hour, no thunder which I found odd as I do what we all do and count the miles away from us that it is and play the is it moving towards us or away from us game. The sky is heavy, it’s dark grey clouds hang low so that the far trees on the Rye that lie beyond our garden can’t even be seen. The rain and the wind adds to the almost horror movie like scene of my garden and beyond. I sit and watch the beauty of nature until 3 am when I try to sleep again.
Awake again at 6 am there’s no biscuits in the jar for my morning ritual – 1/2 biscuit and we are out of coffee beans! Now that’s two out of my three requirements for waking up gone, now I’m not happy. I manage to find coffee pods for Steve’s coffee machine and found an unopened packet of biscuits in the treats cupboard, or condom cupboard I think we will have to call it.
So settled after animal feeding with my coffee, 1/2 biscuit and fag. I sit alone again. I remember the package that arrived yesterday from Macmillan. Lots of reading material, I had started reading this last night but then watched the film instead. So once awake and armed with another coffee I move into the chemo gazebo with booklets and a pen ready to embrace the advice, wisdom and answers to all my problems, fears and worries from the experts.
How wrong can I be again? The main leaflet is called ‘How are you feeling?’ Now before I say what I think about this leaflet I must stress that I accept that for some people this maybe a useful tool and it is full of where you can get advice from. It was written by professionals and cancer sufferers and I must stress that my opinion is mine alone. Okay so now I won’t get sued or struck off any cancer support group.
It’s like cancer for beginners! It assumes that the person with cancer throughout the whole book (apart from one section, more on that in a minute) is unable to talk about cancer or anything else for that matter. I was ready to make markers throughout the leaflet to share with you all in terms of help but I actually found it outdated and lacking any detail. There is an example
Loss of interest in sex – You may need to focus more on sensuality than sexuality at this time. Using touch can be an important way of telling someone how you feel. It can help you communicate emotions that are not easily expressed in words.
Now I don’t know about you but if I cuddle with my hubby he can do this for about 20-30 seconds and then his lack of all control in any way shape or form from his ‘one eyed trouser snake’ takes over and even if he tries to hide the canoe in his pocket it pokes you in either the tummy or the small of your back. Men have no control over this, it’s not their fault. Once the beast is awake then not even thinking about Margret Thatcher can help my man. He tries bless him. If I said to Steve that I was going to use touch to communicate how I feel then he would think I was suggesting a game of charades. They also make no reference whatsoever about being radioactive and that even kissing is out. As Steve says “I’ve gone from the all you can eat buffet to making his own sandwiches.” I’m pretty sure most men would like the touching stuff for about 30 seconds to one minute before their thoughts would move onto wanting to ‘bump uglies’ or whatever you chose to describe making love.
They do recommend the ‘sex and cancer’ leaflet might be helpful or you can ask your health professionals and we all know what happened when I asked about oral sex with ‘Cancer Nurse Kim’ she went bright red and said that no one had ever asked that question before. Great no one talks about stuff, stuff that actually matters.
I did speak to Nicky about this as following her surgery she knows all about finding other ways lead a normal as possible life but even she agrees that she doesn’t talk about it to others. I can always talk to Nicky and we have a laugh on the subject of making your own sandwiches, LOL.
One website said that ‘You may feel differently about your body’ I don’t feel differently about my body, it’s my body that feels differently about me! It blows up like a bouncy castle, it can cause endless trips to the loo (not sexy) and your bum can be so sore that any sensation that you may be able to feel is lost by the never ending pain of your poor bum. My whole body aches, I’m endlessly tired and my arm is so bruised I look like I’m a victim of physical abuse. Any touching in our bed leads to ‘mind my bruised arm, don’t touch my bum, leave my tummy scars alone as that area is still completely numb and not my neck due to swollen lymph nodes.” So that leaves two boobs and my feet that are actually ok, great!
There are charts in the book to write down how you feel. Great, really! On anger they suggest you can either scream or punch a cushion, really!!! So I said to Steve what we could do with is something to get rid of anger and he has come up with ‘The Bullshit Button’ so when we are mad we are going to insert the button into the post for me to press or for you the reader to press, excellent and saves my cushions from being beaten to death or my neighbours listening to me screaming.
On humour there is one page that states “You may find it helpful to use humour in some situations. However you don’t want your family or healthcare team to think you don’t understand the seriousness of the situation. Now it again might just be me but there are undiscovered tribes in the Amazon jungle that know how bloody serious cancer is! I think I understand how bloody serious it is, I just don’t want to be a cancer bore, a victim, a self pitying mess who can’t laugh at herself. Rant over!
So as there is going to be another post today I will leave it there but I have to firstly do the scale of shitness from yesterday.
- Loo = 2 not bad, but I’m confused on this one today as does finishing and then having to go again before you make it out of the toilet count as one or two? and if I go late at night is that on tomorrows count or today’s? These are my worries!
- Sickness = 1 (not actually been sick but felt sick)
- Tiredness = 9 as I can’t bloody sleep
- Emotional feelings = 2 (not cried today and that’s a first in about 3 weeks)
- Fags smoked = 10 (always will be too many so I may take this one out)
No deductions for condoms used 🙁 as the leaflet said try touching – REALLY! I’m radioactive!
Overall score so far today 4.8 🙂 better than yesterday’s 6.6 so it’s a good day. That was until I went to use my car and realised that I have left the sunroof open all night throughout the storm! My centre console is now a water feature that just needs fish to complete the look. My leather interior looks wrinkled as if it’s aged 100 years overnight! It’s one of those moments when only swearing will do or laugh, which was of course what I did.
The second part of my day got much better and deserving of it’s own post so I will attempt a second post after tea for you all…….
