Merry Christmas 2017

Christmas is possibly the worst time of the year for opening wounds, and yet we all put ourselves through it. We had the usual family get together last weekend and I wish I hadn't. 

It has only aided my decision to quit FB. I cannot cope with the extremes that people post, some of it hateful, some of it so self-centred, some of it "look how lucky I am". I have asked my "friends" to message me privately so I have a means of keeping in touch outside of FB, you'd be amazed at how few have bothered, their loss. 😊

Grumble over, I am in reality very generous of spirit, so I will wish all my readers a very happy and peaceful Christmas. 

Bottom of the well.

Many people talk about their depression as a black dog. Mine doesn't feel like that. I feel like I'm at the bottom of a deep well, I can see the light, but every time I am about to climb out, I lose my hold and fall back. Sometimes I only fall a short way and sometimes I fall back to the bottom and lie there dazed for days, weeks or even months. I have been out of the well. I know it is possible. I just have to remember how I did it.

The cheek of it!

Prepare yourselves for the biggest moan EVER! 

Mike is off at the hospital for his immunoglobulin infusion. He called me just as they were starting it off (after various tests and pre-meds that took 90 minutes!) to say they had started. He cheerily said they had given him a booklet that he would bring home, and that it is a real human blood product, not a synthetic one (er... I said that several weeks ago when I pointed out the reason there might be a reaction.). Does he ever listen to a thing I say? Obviously only when it suits, as you will soon see.

I commented this morning before he left that I would like to achieve something useful while he's gone. He heard that alright as the second conversation went thus:

Mike: "Why don't you clear some space so you can do some exercise?"
Lorna: "I'm not in the right frame of mind to exercise." (I would simply berate myself for not being able to do long enough / heavy enough / gone backwards, why didn't I keep it up......)
Mike: "You would be if you started again."
Lorna: "I've got a lot of other stuff on my mind right now"
Mike: "Why don't you talk to me about it?"
Lorna: "I did try, but you simply replied 'well I might as well just give up and die if that's how you feel' so I don't bother mentioning my problems."
Mike: "Well now isn't the time to talk about it, I'm on a ward with 6 people."

Does anyone else ever feel like screaming at their partner?

No I haven't exercised either and so far I've achieved nothing. :(

Not much change.

I seem to have depressed everyone with my last two posts. It wasn't my intention, but not glossing over stuff has that effect. Mike is pretty much the same. The hospital have given us (him) a different antibiotic to try as the sputum sample he gave then last week might possibly have had a bug resistant to the usual stuff, and as nothing else seems to be helping him, and he's negative for every other bacteria and virus they checked for ........ Fingers crossed it improves things. 

The renal team meanwhile have stepped in to check whether Mike has enough underlying iron to even be able to produce red blood cells, again fingers crossed they find out he hasn't and an infusion does the trick. 

After threatening to start Christmas I am happy to report that although the lights remain in the attic, I have bought Christmas presents for six! Only five to go..... make that six, I had better buy Mike something......

I will probably start on the cards Thursday while Mike gets his immunoglobulins. 

A photo of Toni, just because I can!

Oh my goodness.

So yesterday we saw the "big" man himself (he isn't actually big, in fact he might be better described as petite!) We hadn't seen him since before our holiday, back in August, Mike's appointments in the meantime had been with the CNS team or on one occasion with one of the juniors doctors. I think his reaction when he saw Mike had him wondering how come he hadn't seen him for over two months, the fault of course lies not with him but with a NHS which is stretched so thin you can see the cracks under the papering over.

Mike is still neutopenic, his platelets have dropped to 19 and his immunity is so low that Dr S.B. has decided Mike needs immunoglobulin therapy. He is booked in for his first session in two weeks time (as with all things haematology, there is no earlier appointment available, useless system!) He has also been prescribed GCSF injections to try and get his neutrophils up. 

Mike continues to feel awful physically, and I think after yesterday's appointment he is feeling a tad down as the lack of progress inevitably leads to dark thoughts.  I know everyone says it, but I just wish life would treat us a little more kindly. If we've got to cope with health worries let us win £1,000,000 (or more!) If we've got to cope living on a budget, fix Mike so he can at least earn enough to live! 


Still we've got Christmas to look forward to. Maybe I should start immersing myself in that, be the crazy lady who has the decorations up the second week in November. 😆

Apologies. x

Good morning world! I bet you all thought that I was gone for good, leaving you all on the edge of your seats about Mike. I've been to the blog several times, meaning to update you all, but I didn't seem to be able to find the words and then as time passed I felt guilty and that only made it harder.  

I'm here now though, so here we go. I won't bore you all with the details of events from where I left off, I'll quickly give you the bare bones.

When I left you all Mike was bed bound and awaiting physiotherapy. What a waste of time that was. The physiotherapists would do their rounds once a day, usually when Mike was down on dialysis, and as he wasn't in his room they wouldn't return until the following day. If he was in his room having come back from dialysis they would refuse to do physio as he had been on dialysis. Oh and to add insult to injury, they didn't come weekends. To to sum up, Mike did Monday, Wednesday and Friday dialysis, leaving Tuesday and Thursday for physio, if he was feeling up to it, which he didn't. 

Eventually on 19th June Mike decided to simply discharge himself into my care. The hospital didn't want him to leave, he couldn't stand never mind climb the stairs or even get to the toilet. But Mike was determined and so somehow me and our friend Mike C. managed to get him home, lift him up the stairs and get him into bed. For two weeks I struggled lifting him out of bed, onto the toilet, off the toilet, in and out of his dialysis chair...... it took a month for him to have enough strength to use a frame to get himself up and down out of a chair. Hospital visits relied on a wheelchair. 

Slowly Mike has regained enough muscle to be able to walk short distances. His blood figures are still not brilliant and half the time he is neutropenic, his platelets are still around 30 and he picks up infection after infection from the inevitable waiting at hospital appointments. Nearly six months on and he is really only as well as he was a month after the first stem cell. The "experts" keep saying "give it time", I swear the next time they say it I might just start screaming and not be able to stop! 😄

We have both been struggling with the relentless treatment regime, there is no escaping the dialysis and the last couple of months only heightened how life limiting it all is as we tried enjoying our holiday and then had our wonderful friends over from Australia for a month. 🙋(Quick wave to L & D!)

I have come to realise that I need the blog as an outlet for my frustration at / with my life, I know that I am currently suffering once more from a form of grief, the fact is I had assumed Mike would recover in the same way that he did after the last stem cell, that our life by now would be the same as it was two years ago, we'd have to do dialysis but there would still be days off and life would be sweet. Poor Mike just isn't able to get his body to recover, I don't know how to help and no matter how much he hates me for it, I just can't stop myself from being "negative" unable to see or imagine that life will be better in six, twelve or eighteen months time.  As I told a friend recently who is struggling, grieving for a life we had expected but lost is similar to grieving for a loved one. The Mike I met and fell in love with has all but gone, and even though I still love the Mike I have now, I mourn the loss of the Mike who has gone.

Apologies to anyone I might offend in my attempt to express my feelings. 

Is there no end? Day 20

I had a call from Mike yesterday. His mouth is still so sore that eating anything solid is still impossible. They are still feeding him through the tube and he is still having those lovely milkshakes. So far so good.

Mike also told me that they have moved him out of intensive care back to the ward where he has his own room and his own bathroom. This would be good, except he realised that he can't actually get out of bed, his leg muscles have wasted so badly that they will no longer take his weight. He can't walk or stand and needs physiotherapy. Yet another hurdle, something else to stop us ever getting back to some sort of normality. 

Please don't tell me it will all get better unless you can guarantee that he will be normal again by September. I'm so angry with the whole world right now. 😭😡

The verge of adulthood day 18

It's nearly a week since I posted. I should have posted progress before but I couldn't find the time or brain space. For those who don't FB I will recap.

Sunday +12: Mike went backwards. 

Monday +13 Mike stuck backwards. Very frustrated wife questioning why, nurse (they rotate constantly) says he doesn't seem any different from when my colleague handed over. Luckily a few hours later a different colleague who had seen him Friday happened to pop in and couldn't believe how much worse he was. (Thank you. See I'm not crazy.)

Tuesday +14 Mike still in rut. One of the drugs they are giving him makes him hallucinate. Conversation has been impossible since he was taken to Intensive care. The only words out of his mouth have been random rubbish unconnected to what I have been saying, The icing on the cake is a call at midnight (so this is partly for Wednesday). Mike tells me to call the police and tell them the nurses are trying to murder him. 

Wednesday +15 Mike finally agrees to having a nasogastric tube. He hasn't kept anything down for fifteen days. I have a meltdown as I can't understand why Mike isn't improving, not even a tiny bit. 

Thursday +16 I manage to do something never before seen by the paramedics. Whilst simply walking along I manage to get a screw embedded in my foot. I did try to pull it out, no luck. The ambulance was called out by a passing stranger, much to my embarrassment. A trip to A&E was made and two hours later I was out and on my way, the super fast service due to the fact I told them I was actually on my way to Heartlands to see my hubby in Intensive Care. They couldn't have been more helpful and I very grateful. Now you would have thought I would have gone home (I only had one shoe by now) but no, I dutifully went off to see Mike. Cue another meltdown and a good telling off for Mike. I told him enough was enough and that if all I was going to visit was a sleepy, delusional  husband then I wasn't going to keep spending four hours a day travelling. 

Recreated accident

My poor foot!

Friday +17 Another delusional phone call first thing, Mike is convinced we have won some big court battle and can now afford to pay for private care. He has been trying to pull out his lines and feeding tube. I suggest he asks them to review his drugs as obviously something is sending him loopy. I don't visit, but in the afternoon Mike is taken down for dialysis on the proper machines. At 18:00 Mike calls to tell me he has managed to drink and keep down the special fortified milkshake they gave him. Finally a bit of progress.

So today is day 18+ the first day of adulthood. He was out of hospital last time round. Still at least we finally have signs that he is going to recover, cross your fingers he doesn't go backwards again. 

Passing the 11+

Today is +11. I am back from the hospital and can report that Mike was a bit brighter today. His blood pressure is still far too low, he has an infection that could still see him off and he still isn't eating, but through the codeine cloud of nonsensical mutterings Mike was definitely brighter. We had large ducks on bicycles, hairs growing out of the wall and children standing with guns. 

So why when I got home did I burst into tears and sob for half an hour? I'd like to tell you all it was tears of joy or relief, but it wasn't. I cried because there is a pretty good chance that at some point in the next five years I will have to go through the same grief that I have felt over the last few days for real. I don't want to have to keep being told I might lose him, for one day I know I will. I don't want him to die, of course I don't, but the niggling "threat" becomes unbearable. Every bout of pneumonia has a risk of sepsis (I hadn't really understood sepsis until now), every infection a ticking time bomb. My heart can't stand the Russian roulette that myeloma creates, and yet I have no choice. I have to stand by and watch and feel it all. I sobbed for all the lost years of innocent living that "normal" couples have. 

I will leave the rest of my thought processes to your own imagination. I feel so awful.

Health Warning - A bit sad.

I have to warn you all that this is a rather sad post, so if you are feeling delicate please click off. 

I have warned you.

Well if you insist.

Mike 2004.

Yesterday I arrived at the hospital to discover Mike had taken a real turn for the worse. His blood pressure was dangerously low and he has neutropenic sepsis. The consultant from ITU had been down and decided it was best if he was moved as they had more one to one care and drugs that would temporarily raise his blood pressure. Mike told me all this himself, along with the prognosis of what would happen if his heart stopped or his breathing became difficult, in both cases the consultant had said with so many things already not working, there would be no point in either ventilating or performing CPU. You won't need me to tell you how I reacted. Later when Mike was in ITU the same consultant, a very nice man who obviously believes in not sugar coating things, something I actually appreciate more than "let's wait and see", repeated what he had said to Mike. The resulting effect was the same as first time. 

Mike is pretty much the same this morning, it is a waiting game now to see if his stem cells start working and if they do whether they help him fight back from the unknown infection that threatens to kill him. Last night he asked me to make sure this is played at his funeral (tissues at the ready):

It is our song. Mike sang it to me over the phone while he was at the karaoke, after only a few weeks of knowing each other. I think that is when I fell head over heels in love with him. I cried then, I cry every time I hear it. It will now forever more make me cry. 

A week on day +8

Well a week has passed and nothing much has changed other than Mike's blood numbers. They have taken the expected nosedive and have yet to make any improvement. Mike hasn't been able to keep anything down for a week now. There seems to be little anyone can do, the hospital certainly don't seem to be bothering to try. Mike is all alone in a room by himself, I have tried to get to see him most days since last Tuesday, but my stay is limited to just a few hours, the travelling to and from takes around four hours if I have to use public transport, and I can't always get a dog sitter. I can't get to see him today, my plans had to be changed at the last minute. It is all so frustrating.

It was around day 8 last time that Mike truly went downhill, I'm scared that when I visit tomorrow he'll be even worse than he was yesterday. Well meaning people tell me not to worry, that they will be taking good care of him and can't we Skype or talk on the phone. Mike is in no fit state to talk to anyone. He doesn't open his eyes while I am there, I question if he even really knows I visit. 

There's lots of cheer leading from people on the sidelines, telling me it will all be forgotten in a few weeks / months and Mike will soon be back to normal. They forget that our normal is dialysis five days a week and there is very little joy to be had in that. 

I'm not a quitter, so I'm not going to pack my bags and leave him to it, but I do find myself feeling unloved and unappreciated as a wife, I'm just the live in carer these days. 😢😭

Here we go.

Those readers who know Mike and I on Facebook will already know that late on Saturday afternoon Mike got a call from Heartlands hospital saying they had a bed. It wasn't our first choice of hospital, but as Mike's numbers were steadily rising and there was little hope of a bed at the QE we had little choice. The biggest problem is how inaccessible it is unless you happen to live that side of Birmingham. We knew that I would only be able to visit maybe once or twice a week rather than every day. Still we put on brave faces and managed to get through Sunday, and then yesterday I visited and sat there as they gave him the melphalan. I left Mike in good spirits and planned to keep in touch via messages on our phones and the occasional phone call until Thursday when I would visit again. We both knew it would be the last chance to have a reasonable conversation before his counts bottomed out and he became ill.

What we hadn't planned on was his reaction and accompanying infection. By the early hour Mike was feeling very poorly with nausea and a high temperature. By the time he had eaten breakfast and sent me a good morning the nausea had become full blown sickness. The took him off to dialysis and that is the last I heard from him. It seems the radio silence has started far earlier than we had hoped and all I can do is sit here and cross my fingers that they manage to get the infection under control and that the stem cells he is due to be having as we speak do their job. 

I have been a blubbering wreck 10 o'clock this morning.  I thought after the last time we knew what to expect, I was wrong. 😭

UPDATE: At 19:30 today Mike was taken to ITU. Hold tight it's going to be a bumpy ride.

Quickie

Just a quick update. Another month gone. Still no bed. Dr S.B. has put Mike on a course of dexamethasone, 20 mg for four days followed by four days off. The hope is that the dex will manage to hold his disease progression at bay while we are waiting. We have a months course and Mike has just started his second pulse of four days on (oh joy!) 

An SCT is currently Mike's only available treatment, so it's a bit urgent. You wouldn't know it from the way the Q.E. hospital are talking, still number seven on the list, Mike was number seven nearly four weeks ago. If it wasn't for S.B. Mike would have given up all hope. 

I'll update if we get any further news. 

I need a hero.

I feel so lost. Mike is still waiting for a bed, it seems Dr. S.B's urgency messages didn't get through to the powers that be at the QE. They are not in a rush. Mike has had enough. He is ready to tell them to forget all about the SCT. This morning he said he has gotten to the point of letting nature take its course. I don't know what I am supposed to say to him. If I "support" his decision I will be accused of being heartless at some point. If I disagree, then I am unsympathetic  as I don't know what his life is like. 

All this after weeks and months of optimism. When Mike has recovered from his SCT there is a slim chance of a kidney transplant. Mike was already making plans about what he would be able to do to get back to work. Lots of wonderful plans, none of which really involved me. Little old me would have to find her own way. Sitting at home looking after him whilst running a small eBay business would become me running a small eBay business alone. I should jump at the chance, but I know I would go crazy all alone day after day. 

I wish I had once known what I wanted to be when I grew up. I never had a clue, never had a vocation or a plan. Others knew and still know what they want from life. I just stumbled along. The jobs I have done in the past have always been to the best of my ability, but they were never professional in nature. No-one is knocking my door down saying please come and work for us. The obvious direction would of course be care work, but I have to question whether I really have the patience for it. Mike often "complains" about the way I do things and I get upset. Hardly the right way to be with a patient. 

No I need a hero. Someone to take me by the hand and lead me in the right direction. I need a miracle.

Time for a change

As you will all know already, this past year I have been miserable, really miserable. Mike has had enough. We argue constantly. "Misery likes company." 

So I have taken down my last two "negative" blog entries and I am now going to make an effort to only blog "positively" or at least more chirpily. I might still be miserable, but I won't be dragging you all down with me. 

We had an appointment about Mike's next holiday yesterday (SCT) and we have been given a date of April 4th. The transplant coordinator seems quite positive about the likelihood that there will be a bed, especially as Mike needs things to happen quite quickly as he couldn't tolerate the Revlimid.  

So it looks like April could be a busy month, seeds to sow and stem cells to grow. Stem cells and tomatoes. 

Where to begin?

Where to begin?

The last few weeks have been awful. We just weren't prepared for the way Revlimid (lenalidomide) would affect Mike. Lots of other people we had read about seemed to still have a life, off on holidays going out and about, we assumed Mike would feel the same way he had on Velcade. We were so wrong. The first week of RCD seemed to go okay, then Mike developed a rash, the prophylactic antibiotic was blamed and stopped. The 5 mg daily dose of Revlimid was continued. The rash went and Mike developed a cough, not a chest infection, just a really annoying cough. By the end of the first cycle Mike's blood counts had plummeted. So much so, that it was agreed that the second cycle of RCD should be 5 mg every other day. Mike only managed a week. His Hb dropped to 71 (7.1) and his platelets at 54 meant that it took us 55 minutes to stop his dialysis site from bleeding, times that by two needles and you have a very long day. Eventually on Thursday they gave him two units of blood.

Mike still has the cough that plagues our sleep, still can't climb the stairs. My emotions are a complete mess. I go from angry that I have had to do everything around the house for eight weeks, then guilty because well Mike is ill, back to angry that he offers to help friends and family when he can't so much as lift a cup to help me, then selfish when I find myself wishing they would just take him into hospital for his SCT so I can get a break. 

I am fed-up of reading about other couples who have a "perfect" relationship despite illness, am I the only one who is sick of being nothing more than a carer, a slave, chief cook and bottle washer?  I miss being a lover, a friend, the other half of a couple who do things together. 

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. 

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. 

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. 😔 

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........... 

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. 

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.

Bare63

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.  

Bare63

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.

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. 

Bare63

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. 

Bare63

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!

Bare63

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. 

Bare63

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. 

Bare63

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! 

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