It’s just the beginning….


Two weeks post op and Jake is now on the road to recovery. Surgery went well and after 2 nights in hospital he was allowed home so we drove to London to bring him back. He’s been fitted with a super pubic catheter and also a stent that needed to be removed by a district nurse one week post surgery and this was the first battle we came up against.
I contacted the gp to arrange a district nurse visit and all was booked in and seemed ok until the day arrived. The district nurse called Jake to say she couldn’t remove the stent, it wasn’t something they did on district and therefore she wouldn’t be out to change his dressings, he would need to contact urgent care or the hospital, when Jake reminded her he needed his dressings changed her reply was ‘ we only come out to people that are bed bound’ Jake replied he was whereby she confirmed she wouldn’t be out to treat him and put the phone down. He was distraught and said it was obvious why she didn’t want to come out. I contacted my medical friend who was in disbelief, obviously she said she could do the procedure but as a formal complaint should be submitted he needed to go through the correct channels, she also stated that even if the district nurse thought it was something she couldn’t perform, which of course it wasn’t, she couldn’t refuse to come out and change the dressing.
We went to urgent care and were seen relatively quickly and were treated with a complete professional manner, which always restores my faith in our NHS.
The practice nurse was in disbelief about why Jake was there and why the district hadn’t come out but at least he was seen to and all was healing ok.
Later on that day he started to suffer with lower back pain, which escalated quite rapidly and by early evening even his painkillers were not numbing the pain. The following morning we went back to urgent care where the dr thought he possibly had a urine infection so took a sample and issued some more antibiotics, we thought this would be the end of it but by mid afternoon Jake stated that the pain was so intense he felt like he was dying, it was worse than any surgery he had experienced. So once again after a quick chat with my friend we headed off to A&E.
Whilst registering some confusion occurred as the guy dealing with us, after reading his post surgery letter looked at Jake and said he couldn’t understand what surgery he had had, I pointed out it was all listed, once again he looked confused but tapped all the info into the computer, I guess you have to laugh at moments like this as it proves others seeing Jake see a young man and not Jess, I don’t think at the time Jake saw the funny side to it. We were seen after an hour which in A&E terms was excellent. The dr was confident the pain was not associated with the surgery and most probably a urine infection, he issued some alternative painkillers and stated that 2 days of the antibiotics and Jake should feel a lot better. Jake went to empty his catheter bag before we returned home only to see some crystals in it and his back pain had eased considerably. It seems he has passed a kidney stone which of course would explain the intense pain he was in and the instant relief.
I can tell Jake is feeling a lot better as he’s now bored and came up with an ingenious idea to allow him to actually leave the house without worrying about the catheter bag strapped to his leg becoming loose. He asked me to pick him up a pair of cargo trousers and had cut a hole in the pocket to allow the catheter pipe to pass through and the bag to sit comfortably in the pocket supporting its weight, well you do have a degree in business management I said!
The catheter has to remain in place until the 19 th August whereby we have to make another journey to Harley street in London and hopefully that will be the end of surgery for a while.
Emotionally it’s been draining to watch Jake in so much discomfort but I know the journey is coming to an end and he will have a body that matches his brain and once again I’m eternally grateful for the NHS and the journey we have been on with them.

Take my hand

Addiction – what does it mean to you?
To me addiction has been part of my life for what seems like eternity.
Addiction is a disease that entwines it tentacles firmly around its victim, into their heart, body, mind and finally their soul, refusing to let go. Offering them protection from their demons, release from life, promising to make everything better as long as they remain friends forever and a day.
Addiction then becomes a family member, the one no one talks about but everyone knows, every one hates them but no one knows what to do. Maybe if addiction isn’t acknowledged it will slump off looking for another willing victim, if only, as addiction knows their victim has been well and truly caught and if the family ignore it then even better it can entrap its victim and wreak its evil havoc in their lives for eternity.
It took me many years before I truly understood addiction but still it continued with the hold it had on our whole family changing our dynamics little by little. My parents probably thought they were protecting me by not telling me of the true extent of the addiction, I probably chose not to think too deeply about it knowing I had my own problems I had to stay strong for, so little by little addiction began winning its battle to destroy the close bonds the victims family once had, constantly promising them the earth as long as they remained inseparable.
Addiction has no preferance  of race, gender or colour, it will take whoever is willing to surrender and hopes finally it can become one with its victim
The victim constantly battles addiction in the hope they can win, but addiction knows too much, it knows what to say to weaken its victim, sometimes it seems the victim is winning and the family continue their lives not really understanding the respite in behavior will only be momentary, as it takes so much strength to fight off addiction inevitably the victim once again becomes too weak.
One day addiction truly takes hold, the family watch in horror, thinking this will be the victims final battle, they have little strength left, addiction cackles in the background as the family weep silently, nobody knowing what to say to one another, all feeling the guilt of could they have done more, mentally preparing for the worse. Watching the victim in icu fighting for every breath, not letting go to find peace in the addictions hell.
Deep down the victim wants to win and sure enough against all the odds returns to the family, now there are no longer secrets, all the family know the true extent, each one wrestles with their own guilt of could they have done more and slowly the victim becomes strong and the person of old starts to shine through. The family return to old habits , bridges are hard to build when you feel you don’t know the victim because of the lost years, how do you ever start to change the learnt behaviors?
Then months later, when the victim has everything to live for, addiction comes crawling back, nagging in the victims ear until one day the victim submits. A weak moment in time that’s all it was and what sadden me is the victim didn’t feel they could ask for help, once again the old behaviors with in the family were reforming.
I wish the victim would reach out, what ever they need someone will be there when ever. We are not disappointed addiction caught you off guard, recovery is just that – recovery but please let us help you on your journey, don’t let pride stand between us, you and addiction
I am strong enough to fight off addiction for that victim and as a family there is nothing we can’t beat, just ask

Audio

Saying goodbye 

 

I’ve meant to have been here a thousand times but I’ve found a thousand reasons not to be. I’ve had to put all my energy into staying the bright and optimistic person I generally am. Jake returned home and has been extremely stressed about everything. He wisely booked a GP appointment who then referred him to mental health, who unsurprisingly were astounded he had manage to achieve what he has over the previous few years without combusting. My job has been to make sure he is eating regularly, taking what stress I can out of his life and helping him to think ahead.
Whilst it has settled me in some ways to know I’m helping him through this it too takes it toll on me, I’m tired, I find some days it’s hard to be optimistic when I feel life has been so cruel to him. My inner angst has once again taken over, the swirl is constantly reminding me of how my life is but I’m hoping once again it will subside. I guess not being here has stopped me thinking too hard about what’s been occurring, if you don’t think too deeply it can’t hurt you too much.
Some good news now, Jake has gained his degree so is how the proud owner of a 2:1 BA (Hons) in business management. Something we as a family are extremely proud of, he has also secured a new job starting in September, which I hope will bring a happy new stage to his life, a beginning of new friendships.
We have been looking forward to his degree ceremony on the 18 th July, a proud moment when 3 years ago at the start of his course he almost didn’t make it, a day that took tremendous courage from him, until he received a call from the hospital to offer him the next stage of his surgery on the 16 th July, of course this is perfect to fit in with his schedule of leaving his present job, recovering and preparing for his new position, the only downside being he won’t be able to attend his ceremony, but jake said he didn’t work 3 years for a ceremony, how true.
As I mentioned earlier I’ve been struggling lately, just with lots of things but after a chat with a new client who is also a therapist, I guess I’ve been trying too much with everything, some of my worries would be ‘normal’ worries but I have the added twist of a transgender child. I’m worry too much and I must learn to let go of the past, Jess has gone and I have to remember I have a level headed son who has proved he can achieve but sometimes you wish you didn’t need to be strong all the time, that others realised things aren’t always rosy and even the ever optimist doesn’t know what to do. I know I’m tough, I put on a brave face but I’ve noticed recently how some friends just don’t ask, you know, don’t actually say ‘ how are you during through all this?, some I’ve not heard from, I know we are all busy but if I know someone is struggling I try to let them know I’m thinking of them or offer some words of comfort, that hurts and it’s been from some you wouldn’t expect whilst others have been great. Again I’m trying not to dwell too much.
Friday we are heading to London to do a few tourist things before Jake check is into the hospital and I will return home until he needs picking up, life goes on and this will be my final goodbye to Jess, all that was her will be gone and I need to move on.