Sunday, 22 January 2017

Child's Play.

I have never liked horror movies. In my younger years I was pressurised into watching a few by my peers and boyfriend. Carrie, The Omen, Rosemary's Baby, The Fog to name just a few. They would leave me with nightmares for weeks. I know the social references that come from many of the  movies, but I haven't seen the films and I don't want to. I have never watched a horror movie with Mike, I do know that his point of view is very different to mine, to him they are entertaining almost comical as they "aren't real". Our difference of opinion has been the cause of several heated "discussions" as he doesn't understand why I would watch fantasy / science-fiction but not horror "it's all make believe and not real." He misses the point, I wouldn't mind if Star Trek or Star Wars were real, I certainly don't want Chucky chasing me!

Being a carer is sometime like being locked in a room with a horror movie. All I can do is sit and watch as Mike suffers. I can't stop him having unpleasant side effects to his medications or even make it better. How can I stop him suffering haematuria? What more can I do to relieve the terrible itching that has him drawing blood? How do I stop myself from feeling helpless? 

Some days I just wish I could have a different film to watch. 

Tuesday, 17 January 2017

Residual Current Devices save lives.

"An RCD, or residual current device, is a life-saving device which is designed to prevent you from getting a fatal electric shock if you touch something live, such as a bare wire. It can also provide some protection against electrical fires."

I've always thought the blog should be educational among other things, and today's post is hopefully that.

We went off to see Dr SB yesterday afternoon, an emergency appointment arranged on Friday. As we walked in his face paled (well I think it did) and the first words out of his mouth were "what's wrong with you?" They weren't directed at Mike but at me, dear SB obviously thought I was ill (got cancer) too. He was visibly relieved when I told him I had shaved my head for Myeloma UK. 

The consultation seemed to go on for ages and by the end of it Mike had a prescription for RCD, Revlimid, Cyclophosphamide and Dexamethasone. along with the usual antifungal, antiviral and antibiotic, blood thinner and stomach protector. 

This morning's tablets.
Dr SB didn't say whether it was going to be one or two cycles, we're guessing two as they are hoping that Mike will be ready for his SCT in April (I'm not holding my breath though.) 

So today's lesson is: 

RCDs save lives, whether by protecting from electric shock or by destroying nasty myeloma cells. 

Friday, 13 January 2017

Houston, we have a problem.

Houston, we have a problem. 
  • SB unavailable yesterday. 
  • SL covering clinic. 
  • Paraprotein level from Dec 2016 appears to show insufficient reduction. 
  • PM SCT expert unavailable until next week. 
  • SL liasing with SB as to what to do. 
In other words SCT is currently cancelled until further notice (we have twisted arms and got an appointment with SB on Monday). Mike might have to have further treatment / bleaching (Mike's phrase).  I'll keep you all posted.

A very lonely and cold lollipop. 😔 

Wednesday, 11 January 2017

The lonely lollipop.

Mike says I look like a lollipop. Having called the hospital to find out there is no bed for him, it turns out I'm a lonely lollipop. We had this situation six years ago, back then it took more than three weeks to get a bed. The good news is we get to see Dr SB tomorrow, no reason to waste a perfectly good appointment made back in December (he did say make one just in case....... should we worry?) 🙈🙉🙊

Regular updates will continue........... 

Tuesday, 10 January 2017

Hair goes - 0

Or should that be hair gone?

The deed is done, my Justgiving page remains open  (when Justgiving works that is. 😡 )

Now where is my lollipop. 

Monday, 9 January 2017

Hair goes - 1

Only one day left. At 11 a.m. tomorrow it will all be gone. Do I feel anxious? Of course I do. My anxiety is less about actually being bald and is more about people's reactions. Will I offend people who have no choice? Is my act of solidarity like being hit in the face with a wet fish? So far no-one who has been there has made any comment, either via FB or here, so I will carry on.

 My second anxiety comes from my own low self-esteem, will I fail the popularity contest that is fundraising? I would like to reach Mike's total from his abseil, I would have liked to have beaten it 😛. Some people seem to manage to raise hundreds of pounds just from having a coffee morning. It's all about popularity. 

Still I have done my best and at the end of the day we are all singing from the same hymn sheet. I will carry on pestering people for a while once the deed is done in the hope of getting a bit closer to Mike's total. 

A reminder of why I am doing this.
Mike 6 years ago.

Sunday, 8 January 2017

Hair goes - 2

Today we celebrate my youngest son's birthday. If I tell you his nick-name was Tig (short for Tigger) you will understand it when I say that I was lucky to have any hair at all, as a toddler he had me pulling it out! Tig had a mind of his own and seemed to be permanently getting himself into scrapes. 

I know, he looks like butter wouldn't melt!

Happy 26th Birthday Tig.  

Saturday, 7 January 2017

Hair goes - 3

Firstly, Happy Birthday to my youngest daughter. I love her dearly, even if her unexpected appearance was the cause of me having ten years of hair (I could actually sit on it) being chopped off. Unexpected pregnancy =  self punishment = I need therapy. 

Deb aged 8 in her Atzec headdress
I have been thinking over the last couple of days about my reasons for going bald. It certainly isn't self punishment, that is always a spur of the moment thing. It definitely feels to me like an act of solidarity, with Mike, but also with all those who have gone before and those who have yet to go there. I want to raise funds for Myeloma UK who do wonderful work with patients and their families, vital clinical trials and advocacy for patients with the authorities that approve or reject drugs here in the UK.

This head shave is for Paula, Michelle, Sandra, Sharon, Deb, Scotty, Susan, Deborah, Bridget, Pamela, Nita, Amanda, Lorraine, Mandy, Beth,........ the list goes on, and if I have missed you, please forgive me. 

I know that there are people who don't want me to do it, and I understand that they cannot support me in this crazy venture. That's fine, I'll get you with my next fund raiser 😉.

Here's the link to my JustGiving page.

Friday, 6 January 2017

Hair goes - 4

Anxiety. I can't work out if I am anxious because of yesterday's post or whether it was the existing anxiety that caused me to post about my hair phobia. Classic chicken and egg situation (clearly eggs came before chickens.......) 

Blue moon, you saw me standing alone.

Maybe it is the impending SCT that weighs heavy on my mind (well it isn't my hair). Six years ago we were prepared both mentally and physically. We had bags packed ready for the off. This time, nothing. Mike says he will pack Tuesday....... It isn't just the lack of organisation by Mike, but all the unanswered questions that we have about how it is all going to work with the added complication of dialysis. 

"They know what they are doing." 
"We've done it with dialysis patients before." 

Yes, but how exactly? We want to know more. How do cope when Mike needs to go to the toilet and by that I mean NOW! When is dialysis? Is there enough communication between the ward and dialysis unit? It is appalling at our local hospital, the dialysis unit is great, but the wards fail to tell them they need to do the antibiotic and Mike ends up missing it. There's no named person to contact at the QE this time, no CNS who we know by a first name. 

I don't have the emotional or physical back-up of my children this time. They were all at school or college. even the youngest was 15 and able to help with the mundane tasks. Dog walking, washing, filling and emptying the dishwasher, just being there to give a hug...... This time I am alone. My anxiety makes me over-sensitive, I can't even get people to share my JustGiving page, only two FB friends answered my plea and it hurts. The majority of them are connected to Myeloma and still they won't help. 

Thursday, 5 January 2017

Hair goes - 5

You'll all be pleased to hear that today's anecdote has nothing to do with boys and that apart from the obligatory shaggy dog perm of the early 80s, and the cuts to get rid of it, my hair remained intact for quite a few years. 

Jennifer Grey wearing it better than me.

Today's post is about something slightly different. When I went off to university I spent my first year like everyone else in halls of residence. We shared a kitchen, communal eating space, communal utility / washing area and of course bathroom facilities. It was the communal bathroom with two showers and two baths that caused me the biggest problem. Having shared bath water with my sisters you would think I would be fine, but the second I saw other women's hair in the showers or baths I went into a complete melt down. I found myself having to clean the bath, even though I knew our lovely cleaners had already done it and you can only imagine the palaver of the showers.  Hair on my feet would cause me to wretch. 

I was glad to get out of halls and into my own space for the second year. Well just me and my first husband. I seemed to be fine, I guess because I was happy. Things change though don't they. 

The anxiety over the years came and went. I had children and their hair didn't bother me. Then my husband left and the anxiety increased to the extent that I became fearful of my own hair and my children's if it wasn't still attached to them. I can touch it to wash it, but if a loose hair gets stuck between my fingers I have to wash it off straight away (have you tried conditioning when you have to keep rinsing the conditioner off?). I can't remove hair from my brush (my daughter used to do it for me, now it's Mike.) I have to wear rubber gloves when I dust (hair gets everywhere.) The anxiety is always worse of course when I am stressed, which is when my hair tends to fall out more frequently (or is that just imagined because my phobia is more noticeable?) 

I have realised that while my hair is short the hairs aren't long enough to wrap themselves around my fingers and I have been a lot calmer. Short hair might be a plan for the future. 

Wednesday, 4 January 2017

Hair goes - 6

I managed to keep my head (and my hair) for the next six months. By the time I got to the half term break in May and the start of a month's study leave for 'O' levels I had a rather smart one length bob. It gave me confidence in myself, which is probably why a young man from an adjacent school actually started talking to me on the bus. I should mention here that since leaving primary school at 11 I had been in an all girl school.The only male in my life had been my granddad who died January 1976 and the only boy I had kissed had been the cause of my hair downfall. 

The timing of course could have been better, I was supposed to be studying hard for exams, but over the next few weeks we went to a fair in the centre of Wolverhampton. "Wolverhampton Fiesta". He came to my house for tea and I went to his. We even went to a 16th birthday party for one of his school chums in a community centre somewhere over by our schools. IP was my first boyfriend and as any teenager will know, it felt very real. 

Over the exam period in June we  didn't have the same exams on the same days, but on the days we did we would meet on the first bus and then walk the mile and a half to my school (his was just a bit further up the road). On the morning of my 16th birthday and the day of my Religious Studies exam we walked in the warm sunshine and he gave me a birthday present, a delicate heart suspended on a silver chain, a bit like this:

As you can imagine I was really happy. It lasted about fifteen minutes. As we got to the school gate he stopped and said "I don't want to see you anymore" and walked off. Somehow I sobbed through my exam (and passed). 

For the rest of the week I did my best to avoid seeing him. I got an earlier bus, went to a different bus stop and for that week I succeeded. The following week I tried getting a different bus altogether, even if it meant having to walk further to school, but it was worth a try. Big mistake, IP and his (new) girlfriend got on at the next stop. I looked the other way and spent the journey just ignoring them. 

The following day I went back to my normal bus from town. As I got off outside school who should I see but IP and his girlfriend. She came forward and thrust a letter into my hand. I carried on walking, but once I got to school I opened it. Well its contents were what you would imagine an adolescent girl would write to a rival. Nasty in tone, how I should leave him a alone and stop following him (hang on they got on my bus). How he'd only been seeing me to make her jealous (they were together before me), he'd only taken me to the party to make her jealous. You get the drift. With a few more years wisdom I would have laughed in her face, but of course I didn't. Instead I chopped off all my hair so they wouldn't recognise me. I didn't care that people thought I was a boy!

Tuesday, 3 January 2017

Hair goes - 7

My vow to never cut my hair lasted approximately 8 years. In the summer of 1978 my friend Julie Timmins (I think it was Julie) turned up with this:

Oviously, this isn't Julie, in fact as you can see it isn't even the same woman, but you get the idea. I instantly decided I wanted that look too! 

Of course in my naivety I had failed to understand what would be involved. We didn't have a hair dryer at home, so the chances of having curling tongs were nil. No blow drying, no curling, just a soggy mess after the first wash. I lived with it for five months, right up to that one defining moment in November 1978 and the youth club incident.

Those of you who have been reading the blog from the start will know of my shame, but for newcomers I will repeat it.

In November 1978 I started to a youth club about a mile from my house.  It was the usual teenage stuff, table tennis, dancing, general "hanging out" drinking coffee. It was during the second or third week that a lad, the same age as me, showed an interest. We spent the evening having a laugh and when the evening was over he went out of his way to walk me home. At the bottom of my quiet cul-de-sac he gave me a quick kiss on the lips. Nothing untoward, just a peck. We agreed we'd see each other next Friday at the youth club.

When I got back to the house all hell broke loose. My mother had been on her way to look for me and seen me with the boy. I was screamed at, hit and right royally told off. The reason for her hate, he was black (to use her words, I'm not sure what word is currently acceptable). I was to never go to the youth club again.

The following week I took my savings and went to the hairdressers. It was the first time I had used my hair as a self-inflicted punishment. It was all cut off. 

Servalan courtesy of BBC
It wouldn't be the last. 

Monday, 2 January 2017

Hair goes - 8

After I posted yesterday I realised that I hadn't shared my last colour with you all. We decided on Ultra Violet. 

As you can see, in bright daylight it is definitely PURPLE!

Meanwhile Mike is back to his brunette self. 

Sunday, 1 January 2017

Hair goes - 9

Firstly I better say "Happy New Year!" I only wish that the act of saying it was enough to magically make it so. I realise that some of our readers already know it is going to be a $%&#@* awful year (*insert own expletive to match personal sensibilities). 

Here the countdown to hair-mageddon has begun. One of my resolutions is to blog more, which will not be too hard given the excitement that is to ensue. In the meantime I am going to entertain / bore** you (** please select as appropriate) with my hair goes countdown. 

I will tell tales of my relationship with hair, my own and other people's. Today I will start at the beginning. Like some of my own babies I was born with no distinguishable hair. When it did appear I am told it was so fine and white blonde that I might as well still be bald. I can believe it, my own Jenny Wren had very fine hair as a small child, she now has the thickest. 
I don't have any photographs of me, other than one of me with my grandmother. The rest have been left behind in the past.

Eventually it started to grow but due to its fine nature it was kept short. I don't have any memory of who cut it, could have been my mom or my nan, if you'd seen it you might even think my granddad! Whoever it was, I was kept short until I was at least seven. At that point I swore I'd never cut my hair again!