Behind the scenes

I have had a wonderful weekend but is that the whole picture? Sadly no it isn’t. Disease or illness is awful but like all things in life they are graded and accepted or not by the general public. I watched a fabulous film last night called Pride, recommended by Chris (ex boss) who came round to see me on Saturday morning, thanks Chris. If you haven’t seen it treat yourself. It’s set in the 80’s around the Miner’s strike and the fight for the human rights of gay people. Now in the 80’s (you forget how things have changed) HIV was an unacceptable disease by the general public, labelled ‘The Gay Plague’ as I remember. Thousands of people died but society deemed that it was their fault for being gay, disgusting when you think of it, how they were treated.

We now accept gay rights in our society, as we should do. It does however make me think about how we view people, their lifestyles and illness. Let me try to explain……..

Dementia or senile dementia is awful, a slow loss of your memory and mind. I remember saying to my nan who had senile dementia “are you scared nan?” And of course she was. Up until the person loses all memory the trauma of going through that must be awful. Again society accepts this as an awful illness but where’s the funding? Where is the public support? It’s not there really and then when someone you love is diagnosed with it, you then think “why don’t we have a cure for this yet?

I had a text from someone I used to work with at M&S in Oxford Street. Her husband’s mom has dementia and has been calling them throughout the day and night. A terrible illness that families just have to cope with. Another family suffering the long slow journey of watching someone they love fade away. My nan didn’t recognise me for her last two years, which she spent in a wonderful care home. I used to spend most of my time on visits feeding her but talking to others there who were physically in need of care but had their minds still. Which is worse I thought? Having your mind but not your body or having your body but not your mind? But it’s okay cos bad stuff never happens to us does it? So we don’t think about it when rushing around in our busy lives. There was a lovely old man there who just used to sit and stare out of the window, mom noticed that he never had visitors. One day my mom went over to talk to him as she thought he must be lonely, just staring, alone and quiet. He told my mom how he wasn’t lonely as he had a life time of wonderful memories to relive and that’s what he was doing everyday as he stared out of the window. So on balance I think keeping your mind must be better. However if your mind has gone and you wet yourself, who cares! Freedom of not caring or knowing what’s going on also has advantages.

Mental health is another terrible illness, a label, a stigma which is not talked about much. Why isn’t it? Because others think you are mad, you wouldn’t stand a chance at an interview if you were honest about having severe depression as there is very little knowledge out there for us the general public.  So if someone is depressed we try to get them to ‘snap out of it’, Really! It’s not our fault we just want the person to be better and as with dementia and cancer there is no plaster to wear to show us that they are ill.

Another friend texted Steve last night to say his wife had been diagnosed with breast cancer. We went to their wedding. They are in their 30’s and have a six month old baby. I think that it’s wonderful that he turned to Steve, and why did he turn to Steve? I think that because he reads my blog he knows that Steve would understand what he is going through. What it must be like to worry about the health or contemplate the death of the love of your life. Time for you to do your post I think Steve!.

Anyway my point I think is that cancer is accepted by society, it’s pitied, there is an understanding of how cruel the illness can be and because so many people have died from it, empathy from society and support is there. As it should be I hear you say, absolutely I agree. What if I had MS, Multiple Sclerosis or ME? (Myalgic Encephalopathy) which was called ‘yuppy flu’ in the 80’s and again not much public understanding. People were labelled lazy. I still think there is not enough known about ME and people suffer for years without a diagnosis, no label, no empathy and no plaster for the world to see.

So this weekend I’m blessed but behind the scenes Jacob (our new nephew) who was born prematurely at 9 weeks and was doing well but has had a setback. He needed a blood transfusion and is back in the incubator. Steve, the family and I are all rooting for you Fiona and Andrew, that life may get easier for you someday soon. The worry over a child so fragile and small is heartbreaking. When Julie was doing her training in Wordsley Hospital I visited the premature babies and I just thought ‘Oh my, I could never cope with a baby that small’ But as life has taught me, we just have to cope. Something inside us just has to cope because choice has been removed.

 

 

Richard came and spoke to me again last night around midnight and we talked about the charity Beating Bowel Cancer and that it is run on just 200 volunteers. Without their time given for free where would the help for people like me be? I enjoy doing fund raising at work and I’ve been troubled about how to raise money for this wonderful charity. Fundraising has to be fun or challenging as unless you are effected by cancer people just don’t engage with what your trying to do. It’s not just fundraising for me it’s about education and understanding of the second biggest killer of all cancer’s. Bowel Cancer is just not as sexy as Breast cancer. Who wants to talk about bums & poo?? And that’s the problem right there! We don’t screen younger people for Bowel Cancer in England unlike other countries. My children will have to be screened from 36 years of age as that’s 10 years before I was diagnosed. So anyone who has symptoms may not react to them, as like me they may just think that changes to bowel movements or unexplained random pain that goes away is just ‘one of those things’. Once the pain has gone away we all just carry on as normal, unaware of the monster growing inside us. So I know the answer will come to me eventually about fundraising and spreading education of bowel cancer but if anyone has any ideas please let me know. Just to be very clear (I’m not sitting in a bath of cold baked beans for anyone by the way before you suggest it Leanne!) Baked beans are one food that I hate with a passion, Baked Beans and tinned Tuna are the devil’s foods lol.

Carolyn from HR called me today and she also reads my blog (thank you) she said that she also lights a candle for me and says a prayer at church every week. I forgot to ask her which church she attends as I have the Catholic and Methodist denominations covered so it would be nice to gain a 3rd one. I think that faith, believing in whatever God or church is freedom of choice and for me if everyone, even if they didn’t believe in God lived there lives by the 10 commandments then the world would be a better place. Now you are all thinking what are the 10 commandments? so for those of you that can only remember 3 or 4 here is all 10.

1. You shall have no other gods before Me.
2. You shall not make idols.
3. You shall not take the name of the LORD your God in vain.
4. Remember the Sabbath day, to keep it holy.
5. Honour your father and your mother.
6. You shall not murder.
7. You shall not commit adultery.
8. You shall not steal.
9. You shall not bear false witness against your neighbour.
10. You shall not covet.

On number 4, remember the Sabbath, I hope someone from the Tory Government reads this as they are thinking of relaxing the Sunday trading hours! Now having spent my working life in retail I was against opening on a Sunday and I’m even more opposed to relaxing the opening hours. This blog is not supposed to be religious or political at all so I’d better stop preaching and ranting now, sorry.

Rita sent my a picture this week of her candles for myself and Karen, thanks Rita both Karen and I appreciate it. I’m seeing Karen tomorrow so I can give you a full update on her. Another friend I’ve got to know through my blog says that the curfew should be called the chemo curfew. Those two hours are now very precious and we are both sticking to it.

My messenger is still not working properly. I have replied to some of you but I don’t know if your getting them. Please either leave comments on the blog or contact me via text.

Sorry about this being a serious post but I am so blessed. Everyday I go to bed thankful that I can sleep in my own bed, in my own home. That I am okay and not ill. That apart from the side effects of chemo and the pains caused by my tumour in my neck I’m doing okay. How long for I have no idea but as someone said to me recently “Don’t count days, make day’s count”.

I went into work today and took one of my cheesecakes in for Mary to enjoy. Spreading the Juddy Love. Mary just texted me to say that it was delicious. You’re welcome Mary and thanks as ever for the coffee and chat at 11 am.

Back home it’s lunch time and if my son ever wakes up we will take Molly out as normal and then it’s back to work for me. I am also lucky to have this project work as what a great distraction work can be, I can forget my worries about others for a few hours. It’s not that I don’t care but I can’t fix them and this hurts too much. I instead send texts of love and support. Hoping that they, for that moment of reading my words, don’t feel alone.

So the feedback from my editing team is that I ramble on and have covered too many subjects. I’m sorry if this post reads that way to you. The daily posts are to try to explain how I feel and what goes through my mind. So I stuck to my guns on this post and said that it all needs to go in as this post is about worrying/caring about other people. My cancer and my journey is not about me, it never has been. It’s about the joy of life, finding happiness, appreciating others but also feeling suffering, worry of others and expressing myself.