5 plus 1

Morning, insomnia time here again . I've not been great since my holiday unsure why really but so hoping it doesn't last 6 months like the last episode I had. Anyway that's irrelevant to this blog post. 

      I've now been dating Warren for a huge five weeks ! Sounds so wrong as it feels like we've known each other for ages, it's been very intense so perhaps we've compressed 5 months into 5 weeks ? 

Things are going really well for us, early days I appreciate that but for now we're both very and I mean very happy. 

        

Surely that's all that's important ?

 All that any of our friends and family want for us ? 

Of course my children remain my number one priority, they always will and Warren accepts that, I'd think little of him if he didn't. They are my flesh and blood. I've thought about their needs in all this and I think they're being met. They all like Warren and they've excepted him and enjoy his company. I understand your concern that if things don't work out for me being with Warren the children lose out too but I've got to try. I can't just sit here and wait for them all to grow up before starting a new relationship. Henry is just five I'd have a long time to wait. Life and potentially love would pass me by  One day they'll all grow up and leave me, that's the way it is, the way it should be. I don't want to be left alone, a sad lonely old woman. I deserve a life too. I'm sorry if you don't feel this way but this is my life and I'm going to live it. I feel I'm old enough to make decisions and live with the consequences. My children are strong and resilient I think you can see how incredible they are. They all survived the breakdown of their parents marriage. 

      

     Might as well enjoy a proud mummy moment while I'm here, my gorgeous Leah achieved 13 GCSE's 3 A* , 5 A , 4 B and 1 C . Such an incredible achievement and I'm so happy for her.

A'Level English Literature, Maths, Media and Photography at 6th Form next.

                     

I guess what makes me cross is the inequalities in a marriage break up. I've been separated for over 3 years, that's long enough to think about dating again, I'm not on the rebound for sure !  S has actually been dating or been with his partner for over 4 years now. No one questions that , no one . Why ? Why can he move on and not me ? Apparently I shouldn't date as I'm still married, am I committing adultery ? I guess so in the eyes of the law. I know I'm a mother of four but S is a father of four too. He can have an adult relationship with no one saying anything. I want that too. God I'm angry really , it's just not fair.

 I'm not sure if S knows about Warren yet. I guess so as he does speak to the children. I hope he's happy for me and doesn't use this against me as we've yet to start divorce proceedings. That's about to change. The time is right to cut each other free. I know I could but we're not going down the adultery route but two years mutual separation. I guess J ( S's one time mistress now partner ) gets away without being cited in the divorce but I don't care. She's welcome to him . 

In two weeks time S will meet Warren I think as my Ex Mother in Law is visiting for the weekend and she's asked to meet Warren ( sorry my love, it's a big ask ) I think she is very happy for me but just needs reassurance that nothing will change for her. Why would it she's the children's biological grandparent. Nothing changes that and I'm not a cruel woman. She's more than welcome to visit us and I'll continue to phone her and text her weekly. 

So whatever opinions you have of me, us. Please don't judge me . I know you worry about me and I know Warren's friends and ultimately his family are worried about him too but we'll be ok. We've both been through similar break ups because of cheating spouses . Whatever the outcome of our relationship we'll both want the same for each other happiness. Right now I couldn't be happier, together Warren and I don't stop laughing and smiling and that's just so right. My family is in a good place right now and that's where I want it to stay. 

Always a family of five but now there's room for a plus one.

      

Actually now lying here crying , hhhhmmmmm . Maybe I am a little scared that this will all be snatched away from me but I guess that shows how important Warren is to me. I'm willing now to give love a chance xxxxx

Wants and Needs Revisited

So here we are just three months later from my Blog Post on Wants and Needs and things have changed here. 

     My needs are still fundamentally the same that's not changed. I have all in need in life and I'm satisfied. I appreciate all I have and hold. 4 beautiful children, my home, my wonderful friends, family , great work collegues and ultimately Eloise's continued good health after a difficult year.

          What's changed then ? I want or at least at this point think I want a man back in my life. Things are different at this stage in my life when dating. What you look for isn't the same, on many levels I guess. You've life and dating experience , you have history, you have baggage, you have dependants . I think really it's harder than first time around. 

    When you are young and it's first time around, there seems to be a plan that a lot of us follow, you meet the man of your dreams, date, fall in love, get engaged, have kids and stick together knowing times will be tough. When you have been there and done it, you want completely different things and quite often, you don't even know what those things are, and it's hard to let someone into your life. For me I don't know what I want but from dating several men long term and having a failed marriage I do know what I don't want. I guess with maturity I'm able to speak out and say to someone that's not for me. 

I have my children and I'm financially independent and I don't need a man to sustain me or my life style. 

     At the end of the day don't we just want the same thing ? Someone who makes us happy, someone who makes us feel special, someone that cares. I know friends can fulfill these needs too but.......

                            

Ok then this is what happened and where I am now. A friend told me about the FB app Tinder, I think it was a Sunday but that's hazy already . Out of curiosity I downloaded it and set up a profile. To explain it in simple terms, it's a dating app. Photos, short bio and you then add age range of partner you are looking for and distance from you. Tinder then provides photos of men in your area. You swipe the picture one way for Yes and another for No. If you and the man both swipe Yes you have a match and can message each other. Anyhow got a fair few matches but on closer inspection things weren't as good as they seemed, too far away, monosyllabic on messaging , or just plain weird.  

      

      From it I was matched with W, we chatted a little and just a day or so I had his mobile and I met him very briefly in Town. From that fleeting visit our texting went a little crazy. Days later it was time for my two weeks in Turkey, in preparation we added each other on FB, downloaded Messenger and exchanged email addresses. Thank goodness for these free methods of communication and the advancements in technology that allowed us to continue chatting. Messages pinged back and forth as we learnt more about each other.

           Last Sunday I arrived home, W and I had our first date arranged for Monday meeting in a local coffee shop. But by 4pm I decided to ask if he wanted to bring it forward. So first date night was Sunday. We went to a Country Pub and luckily discovered we could converse and make each laugh in reality without the use of FB smiley symbols ! It was a success .

        Monday was a 11 hour date ! Really good fun, coffee, walk around the Harbourside, Lunch, two country pubs and back into the City for Dinner. Being together for that length of time seemed natural. Wednesday Evenings date drinks in a local pub and Friday's the Adults Only night at the Zoo. Yesterday was another marathon all day date. We've already got a joint membership to the National Trust, so we went to Tyntesfield and had a wonderful day together. Yesterday was spent shopping and having a nice lunch out. Followed by a DVD evening with my children , who have accepted W into our home. 

   So there we are one week six dates all very lovely, it's still very new and it's quite strange how fast things have happened. It's just 4 weeks since I installed that App. It's now deactivated , there were some strange men on it ! It's fate I guess W had only just installed the App too. So who knows where the future will take me but for now I'm happy and surely that's the important thing ? 

     

Living the Holiday Dream x

What a difference just under two weeks make . It's funny how life flings you around, perhaps it's sometimes more of a Wultzer than a rollercoaster ? A couple of weeks ago I was worrying about Eloise's health again now I'm here in Turkey celebrating the life she's been given by her donor family. I'm so lucky to have my gorgeous girl here with me today . 

This is what we all strive for normal family life , no worries, freedom , precious time together . My family always comes together so strongly when we're together in this way on holiday. God I know I'm lucky to be able to afford such luxury but the time to me is precious . I save all year for this, putting money into an account each month. Maybe it's money that could be spent elsewhere, but I've weighed it all up and being on holiday together out weighs everything else I could buy . Off course if my money could buy me more time with my Eloise I would not hesitate to spend it that way, maybe this is the best I can do right now. All memories are precious but the ones we create together on holiday seem golden . That sounds a bit pass the sick bucket but I'm sure a lot of you will appreciate the sentiment. Sometimes when you're at home, you're just living alongside each other as life has become incredibly busy ? A holiday makes you spend quality time together.

                         

     So the next two weeks will be spent as a fantastic family of five, because as we've found out 5 really is our magic number ! I'm grateful to S he has sent me money today to treat the children , so we can have an even better time. 

To top it off our friends A and M are here, we met at the Orka in 2010 when I was still with S and again in 2011 when we'd recently split up. So here we are 3 years later catching up and enjoying each other's company. Like we've never been apart, some friends are just like that aren't they, separation doesn't change your relationship. I'm happy as they'll soon be living a lot closure to us again.

                    Lots of love to you all from Us xxxxx

                          

The Clinic Letter

My Superhero loving daughter was kidnapped and replaced with someone wearing pink , frilly socks and a plait in her hair, I was privileged today !                                                    

         

                                             

The Clinic Letter 

Those of you that have regular trips to hospital appointments will be aware of the post appointment clinic letter. These letters usually arrive 3 weeks after the consultation, you're cc into the letter that is primarily for your GP or other specialists involved in your care. 

    So Eloise's Bristol letters go to our GP and her GOSH consultant and then of course her GOSH letters go to GP and Bristol consultant. The GOSH letters used to enjoy a little trip to India to be typed at one point. I remember a particularly vile patronising transplant nurse telling me so "Mrs Allen you must remember we are busy and our letters are typed in India " Mrs Allen failed to comprehend this and remained cross that a letter telling her her child needed to start antihypertensive medication took 8 weeks to arrive ! 

          Also these letters never seem to make it into your notes very swiftly as in you go to your next shared clinic appointment and the letter from a clinic three months previously hadn't been filed , where is it ? 

    Now this brings me to my latest experience with said clinic letter. On the 11th of June Eloise was seen in Bristol, she had an ECG and an Echo and saw her consultant Dr M. After Eloise's echo the technician got it checked by another tech, they seemed concerned, stopped engaging with us and started that whispering . Well what does that do to you ? For me my stomach knots, I feel sick, faint and cold. Eventually Dr M came back from seeing an emergency patient and said he was happy with the scan, phew, relief floods through me once more. I become chatty again , the World is a good place, my child is ok. Fast forward 3.5 weeks the clinic letter drops through the letter box on Friday......

   I read it getting to the part about the echo. There in black and white "septal motion abnormal " What !!!! They said everything was ok, abnormal isn't ok , well it's not normal ! Fear floods in again. I do what I tell others not to do I google, getting nowhere reassuring !

It doesn't make sense why tell me everything's ok and then send me this ? I go from reassuring myself that if it's something major wouldn't it have been dealt with already to that's it no holiday they'll admit her more tests . I think why has she got this problem now, is it her new medication Ivabradine that lowers her heart rate. Maybe this is an electrical problem....yes that's it they'll tweak her medication she'll be fine. Another problem was also mentioned but that made even less sense to me. 

    So there we are 5 days and nights followed, anxiety levels fluctuating from being totally ok to doom and gloom. Couldn't think ahead , couldn't look forward to our holiday, or even going out the next day. Everything like that lost it's shine. Scary how quickly that happens when things aren't "right" with your child. 

        Couldn't eat breakfast this morning but managed a hot chocolate and ginger snaps on the train, they swirled around in my protesting tummy. Levels of fear increasing as we got nearer to having the dreaded echo. How happy was I that a lovely friendly lady called her in. This makes such a difference some of the GOSH techs aren't great in the communication department. I was glad when the echo was over, she didn't ask for another opinion ( great ) she didn't call for a Dr ( marvellous ) phew ! Thought of rummaging through the notes on the way back to clinic but resisted ! 

         Then it was time to see Dr F I was glad it was him, I trust him, I like his approach and his honesty.  He was smiling away, everything looked fantastic, great ECG voltages higher than they have been for quite a while, stable echo with no increase in fluid good function. So I showed him the clinic letter, he then popped Eloise's echo up on his screen checking for the problem Bristol had seen it wasn't there. Phew, he said even if it was a flattened septum is common in transplant patients .He also reassured me regarding the other problem. 

  Next time I'm worried I must ring him, he insisted that I ring his secretary and leave a message and he'll get back to me. I know if clinic had been ages away I would have rung. I'd already scanned and sent an ECG to them from the 11th June as I was worried. 

        So there we are the clinic letter, it's designed as Dr to Dr correspondence it can be too complicated for us to understand ( and I'm a nurse ) yet we get sent it. How often have you wondered what it all means and been concerned ? Yet if we don't receive a copy it can sometimes be hard to get new prescriptions or treatments as the Drs seem to not have the letters infront of them when you visit, a delay in filing them. A tricky situation indeed. 

Advance Warning !

It's nearly National Transplant Week, prepare to be swamped ! 

      

I was just thinking today whether all my FaceBook friends were actually on the Organ Donor Register, perhaps that should be my new criteria for adding new friends ? There's a thought.....

 In some ways why should you be registered it's your decision , your body, your organs. I wonder how many of my friends have registered to become donors because of Eloise and her story, must be a couple of people for sure. I guess her story highlights the fact that any of us could need a organ transplant in the future. Statistics tell us we're more likely to need a transplant than become a donor. Common viruses can cause rare complications leading to an individual needing a transplant, you don't need to be born with a "poorly" heart for example. 

    We all have things we are passionate about, organisations , concerns we support often things that have touched our lives or those of our loved ones. I guess Organ Donation is mine, I've been an organ donor since 1989, still got my card here somewhere . I signed up when I started my nurse training, can't remember if I found the leaflet at my new GP surgery or whether we were handed them when we started our course. Anyone in Set 227 remember....dig deep ! So of course now it's taken on a different meaning, we crossed over to the other side. I live with a transplant recipient. I have a gorgeous daughter who is only here because of a donated organ. See that pushes me on to promote the register, do you get sick of it ? If so please feel free to delete because I cannot stop. Sometimes it's what keeps me going, fills a potential void, gives purpose and helps me to give something back. 

Eloise is one of the lucky ones, she got an organ, nearly 7000 people are currently waiting for a transplant in the UK, 3 of those will die each day waiting only to be replaced by others. Statistics are cruel aren't they? 253 people are currently waiting for a heart transplant and 32 of those are children. It makes you realise what a lottery this is with quite poor odds. The family has to say yes to transplant, the organs need to be in transplantable condition, they need to tissue match, blood group match, CMV match, size match and be transferred to the transplant hospital within a small window of time. Then the donor needs to be ready and well enough to receive a transplant. I've probably missed something vital out but you get the general idea. It's a miracle anyone gets a transplant.  

So I could go on, perhaps I will next week, this is just your warning ! 

                        

So if you love me ( blackmail involved here ) please sign the Organ Donor Register Today, Tomorrow, as soon as you can it takes just minutes.

http://www.transplantweek.co.uk/register/

Single

       

                

I'm single is that a bad thing ? Not to me it isn't it's a way of life I'm enjoying . I feel I've found my true self again after suffocating her for too long, in order to have an "easy" life as part of a couple, marriage. I no longer have to make any compromises. Obviously I have my four children's needs to meet but that's not what I'm discussing here, this is about my free adult time.

   

Is it a problem that I'm single ? Do you find it strange that I'm content ? Is it weird that after three years of being on my own I'm not actively seeking another man ? 

I'm on my own because I want to be, not because I'm deeply distraught because my husband had an affair, not because I'm nursing a broken heart or that I have trust issues. Just because...... 

Don't get me wrong I like male company, enjoy chatting to men , banter,  flirtation even but the thought of "taking on " another man full time just doesn't fill me with joy. I'm not a man hater. I wouldn't run a mile if someone came along and there was a spark, I'd just take things at a slow pace, to ensure it's what I want in life.

Who is out there, which fish are left in the depths of the sea ? 

   1. Too young , lovely thought the younger man but could I deny them a family of their own ? Deny their parents grandchildren etc. Do I want another young person to look after ? Are they house trained ?

   2. The divorced / separated man , is he bitter, angry about his Ex, does he have kids, how often does he see them, what are they like, how would they fit in with my children? I'm not sure I like other people's children enough to let them infiltrate my life or vice versa really. Who wants 4 kids in their life ?

   3. The older man, grown up kids ? Or a bachelor ? Not sure which of these options is worse probably number 2 if he still lives with his mum ! 

    I know I'm just getting carried away with this but I just want you to see that I'm happy. We don't all need to belong to another, to be part of a loving couple. Last night someone said in a lifetime you fall deeply in love 3 times. So on that note I better get cracking to fit all 3 in before I die ! 

If you find yourself single just look at it this way if you are uncomfortable spending time alone with you what makes you think anyone else will feel comfortable in your company? When you're a couple you continuously fill up your life with their life only to discover you really don't know yourself anymore. You have to like yourself ! Sometimes the only way to find you is to be alone, not hop from one relationship to another. 

Being single at my stage of life is different of course I do appreciate that, I dated back to back and over lapped in my late teens and early 20's then I met S, we got engaged,then married and had 4 children before it was over. I have a complete family, my reproducing days are truly over, no hurried dash to meet a mate before the biological clock ticked backwards until your eggs are past their sell by date. I'm sure being single in your mid 30's when you still want Mr Right and a family is truly hard. Do you then settle for less ? Again I digress again I think I settled for less but in a compromise kind of way, actually I did because I don't feel I've truly been in love or been loved. I still feel that will happen for me in the future.

For now just be happy for me, oh and please don't send me direct messages on Twitter just because you see my profile picture and the word single. Single doesn't mean desperate, single doesn't mean I'll lower my standards it also doesn't mean I want to see an unflattering picture of your bits ! This seems to be a common trend these days also encountered by my friends who use Internet dating ! Never happened in my day ! 

          

Roller Coaster

On the 12th June 2013 Eloise's first bout of rejection was found on echo and ECG at clinic in Great Ormond Street. From there the roller coaster that is transplantation has had a few more loop the loops for her to endure. A second bout of rejection, a pericardial effusion that's required drainage in September and November all downs on the coaster. Followed by a massive up in January when Eloise had fantastic results in all her tests including her 24 hour B/P monitoring, exercise tolerance test and ultimately her angio. Since January we've been coasting along nicely with good reviews in March and April then whoosh off we go again .....this time pneumonia. 

       

           From an illness point of view Eloise has always been very hardy,  a couple of ear infections caused by spending two weeks under the water swimming on holiday and a couple of colds. Nothing major at all, better than a lot of non immune suppressed people. That's why it probably came as such a shock that she caught pneumonia. It was caught very early and responded well to intravenous antibiotics and Eloise is continuing on oral antibiotics too . This is just thought to be an atypical pneumonia, therefore nothing major and more risky for the immunosuppressed. 

               On Wednesday Eloise saw Dr M in clinic, I was expecting a chest review rather than her heart. As she'd only been seen in Cardiac Clinic the week before. Anyway she had her Echo and a ECG performed. Both were reviewed by Dr M and both tests showed no signs of rejection. 

However you know that gut wrenching feeling you get sometimes that perhaps we're missing something, you know when you lose your positivity ? I got that. I kept thinking was the pneumonia a red herring, or rather was it masking rejection, similar signs, shortness of breath, temperature etc. The cardiac technicians who did Eloise's echo looked concerned and were whispering when they usually chat to me, about what had they seen, measurements deteriorating etc. Eloise's ECG said low voltages , low voltages can indicate rejection. I could calm myself and talk things through like I would if I was giving someone else advise but then the feelings would resurface again. In the end I contacted GOSH transplant team and sent them a scanned copy of Eloise's ECG. In the meanwhile Eloise's discharge summary came from her admission. This also gave me reassurance. It was still good to hear from nurse K that Eloise's ECG had been reviewed today and it looked really good, better then Aprils as she's no longer tachycardic. Phew now breathe.

      It's hard living like this, I've described the cloud before, well it was hanging around big time Wednesday and Thursday thankfully moved on to sunny spells now. You never lose these anxieties, well I don't think you do. Waiting for the reassurance of the next clinic appointment but dreading it at the same time. This isn't really normal life is it ? But it's what we signed up for when we got Eloise transplanted. We swapped death for life, we swapped one set of problems for another. We gave her an uncertain future but I guess the only real certainty in Life is Death, none of us escape that. 

       

So that was Eloise's medical year, 12th June - 11th June. Quite a crazy one and a difficult one emotionally . But one year out of 12 incredible extra ones that's still pretty amazing. Each one a gift, each one a bonus. 

Like I said that above is just the medical side of things the rest of the time was spent living being a teenager, camping, going to concerts, drama classes, school, roller skating, going to Ibiza, swimming in the transplant games, chilling with friends, shopping with mates, computer games, Lego , watching films at the cinema, Dr Who, tortoises, Sims 3 and loads of other absolutely important things when you are growing up and living ! 

                                           

    So you can't write that year off, just come out of it stronger and more grateful for what and who you have in your life.

                           

People who should be there for you just aren't which is sad but ultimately their loss. Then during the last year others have walked into our lives or Twitter accounts and have held us up virtually and in reality. I'm so grateful to you all, amazing friends. #TransplantFamily ❤️