W just asked me if I remembered what we were doing this day 5 years ago!
After a couple of minutes trying to think, I gave up.
So, 5 years today it was W's first testosterone injection.
To me it feels like I've always had W.
So happy 5th birthday WZxx
Merry Christmas to you all and best wishes for a very happy new year xx
Tuesday, 20 December 2016
Thursday, 1 September 2016
(117) Overdue update!
I decided not to post during the last few months as there wasn't really much to say as W was just getting on with things.
But, looking back since the operation in April, W has come a long way. W has completed his teacher training, which was definitely hit and miss due to the amount of time he had to have off. On the plus side to this, this has been recognised and he received a lovely email from the head of the university who praised him for his determination etc, he will receive an award at his graduation for 'Tenacity and Resilience', I am so proud, I really don't know where he gets his strength from!
W had two holidays booked over the summer, again he was very concerned has to how he would cope. One of these was with me, he agreed to travel to Mauritius with me as it has been a life long ambition of mine. This was booked over 12 months ago, W did wonder at one point if we should postpone as he didn't want to spoil it for me. W emailed the hotels and explained his medical need, we were given extra bedding and bath towels. On the flights he was given a seat close to the toilets. Dietary wise, W managed very well but had to avoid lots of 'different foods' as he didn't want to be ill. We had afternoon tea in the Burj Al Arab, W had discussed his dietary needs and they couldn't have been more accommodating, superb, recommended if you ever have the chance!!
Holiday update- it was fantastic. We stopped in Dubai for 3 nights o the way and explored. W coped very well. In Mauritius he sunbathed without his t shirt on, people really didn't care that he had a stoma bag. One lady came and spoke to him and praised him for his attitude, she had a Dr son who had a stoma and would never remove his top!
Currently he is in the Dominican Republic with S they are having a ball, S is such a rock for him.
Best news ever they have got engaged there.
So a very happy mummy, and it's lovely to post such a positive update.
Take care everybody and follow your dreams, it does turn out well in the end.
But, looking back since the operation in April, W has come a long way. W has completed his teacher training, which was definitely hit and miss due to the amount of time he had to have off. On the plus side to this, this has been recognised and he received a lovely email from the head of the university who praised him for his determination etc, he will receive an award at his graduation for 'Tenacity and Resilience', I am so proud, I really don't know where he gets his strength from!
W had two holidays booked over the summer, again he was very concerned has to how he would cope. One of these was with me, he agreed to travel to Mauritius with me as it has been a life long ambition of mine. This was booked over 12 months ago, W did wonder at one point if we should postpone as he didn't want to spoil it for me. W emailed the hotels and explained his medical need, we were given extra bedding and bath towels. On the flights he was given a seat close to the toilets. Dietary wise, W managed very well but had to avoid lots of 'different foods' as he didn't want to be ill. We had afternoon tea in the Burj Al Arab, W had discussed his dietary needs and they couldn't have been more accommodating, superb, recommended if you ever have the chance!!
Holiday update- it was fantastic. We stopped in Dubai for 3 nights o the way and explored. W coped very well. In Mauritius he sunbathed without his t shirt on, people really didn't care that he had a stoma bag. One lady came and spoke to him and praised him for his attitude, she had a Dr son who had a stoma and would never remove his top!
Currently he is in the Dominican Republic with S they are having a ball, S is such a rock for him.
Best news ever they have got engaged there.
So a very happy mummy, and it's lovely to post such a positive update.
Take care everybody and follow your dreams, it does turn out well in the end.
Sunday, 22 May 2016
(116) Not the outcome we expected...
W went for surgery on Sunday24th April. Everything went well, surgeon happy with the procedure. On the Tuesday, W text me early in the morning to say he had passed wind...Brilliant, never thought I would be celebrating my son having wind!!
On the Wednesday W had to have a small procedure as there was a hematoma in the original stoma opening, I managed to finish work immediately to be with him as he was still not confident that everything was going to be successful. Everything was good.
On the Thursday W's stomach was quite enlarged and he was experiencing a lot of pain, on the Friday the surgeon was becoming concerned, he had not had a bowel movement and his stomach was very enlarged. The surgeon who was fabulous, decided to send him for a CT scan, this came back but didn't show anything up in particular, join was good, surgeon says the swelling is due to the incisions. On the Saturday the surgeon made the decision to open W up as his stomach was still swollen and bruising had appeared at the tops of his legs, also he was suffering a tremendous lot of pain.
W had to sign the consent and we had the discussion with the surgeon that he may have to put the stoma back.
W went in to surgery at 4pm. At 8.30pm the surgeon broke the worst news to me. W was in a mess, adhesions had attached themselves around the bowel and intestine, the join had come apart. Due to the amount of surgery he had had, W had to stay in intensive care for 24 hours then he was having further surgery to put in the stoma. The following day I was unable to see him. On the Monday I got there early and met with the surgeon. Due to W's bowel being in a mess he had had to remove more of the small and large intestine, the stoma would not fit in one hole, he had to make two incisions so W would have two stoma bags. W was unaware. he surgeon broke the news to W.
24 days later I have W back home. It has been a very difficult time, very tiring I have done 2000 miles driving back and forth to the hospital.
On the plus side W is very well due to the care at this hospital being superb. He is putting weight on and the stoma output is excellent, we have learnt so much.
Only down side is W's emotional state, he has had a couple of breakdowns. Work have been great with him and he can't wait to get back.
Money side of things, again the hospital have been very helpful, the bill has been reduced greatly, the surgeon will not be billing W, the ward sister has negotiated a reduced fee for the room cost and he had no food whilst he was on the private route! The surgeon transferred him on to the NHS after 5 days which was agreed at the consultation.
W is now questioning why did he decide to have the hysterectomy in the first place? Would he have been happy if he had stayed as who he was? Is he happier now but with a stoma?
My answer is, he's a happy, confident, lovely young man, with a very rosy future and I wouldn't want him any different; this is only another little blip in his quest to carry on with the life that he is mapping out for himself.
On the Wednesday W had to have a small procedure as there was a hematoma in the original stoma opening, I managed to finish work immediately to be with him as he was still not confident that everything was going to be successful. Everything was good.
On the Thursday W's stomach was quite enlarged and he was experiencing a lot of pain, on the Friday the surgeon was becoming concerned, he had not had a bowel movement and his stomach was very enlarged. The surgeon who was fabulous, decided to send him for a CT scan, this came back but didn't show anything up in particular, join was good, surgeon says the swelling is due to the incisions. On the Saturday the surgeon made the decision to open W up as his stomach was still swollen and bruising had appeared at the tops of his legs, also he was suffering a tremendous lot of pain.
W had to sign the consent and we had the discussion with the surgeon that he may have to put the stoma back.
W went in to surgery at 4pm. At 8.30pm the surgeon broke the worst news to me. W was in a mess, adhesions had attached themselves around the bowel and intestine, the join had come apart. Due to the amount of surgery he had had, W had to stay in intensive care for 24 hours then he was having further surgery to put in the stoma. The following day I was unable to see him. On the Monday I got there early and met with the surgeon. Due to W's bowel being in a mess he had had to remove more of the small and large intestine, the stoma would not fit in one hole, he had to make two incisions so W would have two stoma bags. W was unaware. he surgeon broke the news to W.
24 days later I have W back home. It has been a very difficult time, very tiring I have done 2000 miles driving back and forth to the hospital.
On the plus side W is very well due to the care at this hospital being superb. He is putting weight on and the stoma output is excellent, we have learnt so much.
Only down side is W's emotional state, he has had a couple of breakdowns. Work have been great with him and he can't wait to get back.
Money side of things, again the hospital have been very helpful, the bill has been reduced greatly, the surgeon will not be billing W, the ward sister has negotiated a reduced fee for the room cost and he had no food whilst he was on the private route! The surgeon transferred him on to the NHS after 5 days which was agreed at the consultation.
W is now questioning why did he decide to have the hysterectomy in the first place? Would he have been happy if he had stayed as who he was? Is he happier now but with a stoma?
My answer is, he's a happy, confident, lovely young man, with a very rosy future and I wouldn't want him any different; this is only another little blip in his quest to carry on with the life that he is mapping out for himself.
Saturday, 2 April 2016
(115) Yay, it's happening!
A very positive appointment with the surgeon, he is more than happy to take W on for this reversal.
We had a very in-depth conversation about the procedure, true to W's form it is complicated.
Usually a reversal is done by stitching the two ends together through the stoma opening, in W's case he has to have an incision through his stomach as there is not much bowel to play with. The surgeon knows best, so we'll trust him to know what he is doing.
The cost of this is ridiculous but how do you put a price on your health and happiness? The total cost is £7,300. After agreeing that W could be at the hospital by 7am on the 24th, he does not need the overnight stay the night before, that has saved us £400, so £6,900 sounds better...We have arranged to borrow this off a very close friend and it was agreed that W could begin repayments after his holiday. (This holiday was paid for before all of this happened, he would lose a lot now if he cancelled).
The donation page which S set up has been a success, so far we have raised just under £1000. We are overwhelmed by the generosity of family and friends.
Operation booked for 24th April. W not getting excited at the moment, he is wondering how he will cope if he wakes up and the ileostomy reversal was unsuccessful!!
He is also feeling guilty about borrowing such a lot of money and receiving donations when he has a holiday planned. He will appreciate the holiday as he needs a positive focus. Just hoping now that having a couple of weeks off work will not cause any issues with his training year, health v work, health every time!
If you would like to make a small donation, this is the link to the go fund me page -
https://www.gofundme.com/2hujumqk
We had a very in-depth conversation about the procedure, true to W's form it is complicated.
Usually a reversal is done by stitching the two ends together through the stoma opening, in W's case he has to have an incision through his stomach as there is not much bowel to play with. The surgeon knows best, so we'll trust him to know what he is doing.
The cost of this is ridiculous but how do you put a price on your health and happiness? The total cost is £7,300. After agreeing that W could be at the hospital by 7am on the 24th, he does not need the overnight stay the night before, that has saved us £400, so £6,900 sounds better...We have arranged to borrow this off a very close friend and it was agreed that W could begin repayments after his holiday. (This holiday was paid for before all of this happened, he would lose a lot now if he cancelled).
The donation page which S set up has been a success, so far we have raised just under £1000. We are overwhelmed by the generosity of family and friends.
Operation booked for 24th April. W not getting excited at the moment, he is wondering how he will cope if he wakes up and the ileostomy reversal was unsuccessful!!
He is also feeling guilty about borrowing such a lot of money and receiving donations when he has a holiday planned. He will appreciate the holiday as he needs a positive focus. Just hoping now that having a couple of weeks off work will not cause any issues with his training year, health v work, health every time!
If you would like to make a small donation, this is the link to the go fund me page -
https://www.gofundme.com/2hujumqk
Wednesday, 16 March 2016
(114) Light at the end of the tunnel
I did some research on the good old Internet and found a surgeon who was happy to take on W's reversal privately.
We had an appointment earlier this evening to discuss. Mr Titu, he is based at Murrayfield private hospital at the Wirral, this is the Spire group. Lovely gentleman, he gave W a thorough examination and had received lots of notes off Mr Farmer so he had a good insight to everything. What was even better, he never once mentioned W's reassignment surgery.
We are just waiting on a price, due to the complexity of this operation it will cost more due to the intense after care after the operation. If all goes to plan with the price, he is booked in on the 23rd April. Hopefully a light at the end of this never ending tunnel.
W's girlfriend has set up a go fund me account. I have put the link below, any donation would be greatly appreciated.
We had an appointment earlier this evening to discuss. Mr Titu, he is based at Murrayfield private hospital at the Wirral, this is the Spire group. Lovely gentleman, he gave W a thorough examination and had received lots of notes off Mr Farmer so he had a good insight to everything. What was even better, he never once mentioned W's reassignment surgery.
We are just waiting on a price, due to the complexity of this operation it will cost more due to the intense after care after the operation. If all goes to plan with the price, he is booked in on the 23rd April. Hopefully a light at the end of this never ending tunnel.
W's girlfriend has set up a go fund me account. I have put the link below, any donation would be greatly appreciated.
Sunday, 6 March 2016
(113) Another unhappy update!
I really wish I could write something more positive, this situation is getting me down now, W is beside himself.
We looked into the private route, the surgeon who did the op does do private too, fab! Not!
After a long phone call with his secretary she called back with a price and said she would put him forward, she did explain that there would be a chance he would not do it privately.
Two weeks later, W received a call to be told the devastating news that he would not do it as it was to complex! Not sure what he meant by that as W was dumbfounded and couldn't ask any questions.
W has since rang the secretary to get this op done as soon as possible, now we're told it is looking more like 18 months, can it get any worse.
We fully appreciate that all of the cancer patients are priority but it's looking like this op will never, ever take place.
In the mean time, W has now returned to work full time, he has had his timetable increased and has to do three assignments by the middle of March. He is also struggling to eat and drink due to the embarrassing noises it makes and the constant emptying of it, he will never put his weight back on living like this. This is putting a big strain on his relationship as he is always working and is too tired to do anything due to him getting up 5 times in the night to sort the bag.
I have not seen W so low for a long time, he is very emotional and angry and so over tired.
We both have an appointment with our GP this week, I am hoping he will do something as I am not coping very well at the moment, I am exhausted and concerned for W's mental health as he has said he has suicidal thoughts. W has been asked by the secretary to get a letter off his GP stating his mental health state to help to move him up this mile long list, it will cost, but who cares!
We have discussed the holiday which we have booked for August, realistically we may have to postpone it, I suppose that is the least of our worries.
We looked into the private route, the surgeon who did the op does do private too, fab! Not!
After a long phone call with his secretary she called back with a price and said she would put him forward, she did explain that there would be a chance he would not do it privately.
Two weeks later, W received a call to be told the devastating news that he would not do it as it was to complex! Not sure what he meant by that as W was dumbfounded and couldn't ask any questions.
W has since rang the secretary to get this op done as soon as possible, now we're told it is looking more like 18 months, can it get any worse.
We fully appreciate that all of the cancer patients are priority but it's looking like this op will never, ever take place.
In the mean time, W has now returned to work full time, he has had his timetable increased and has to do three assignments by the middle of March. He is also struggling to eat and drink due to the embarrassing noises it makes and the constant emptying of it, he will never put his weight back on living like this. This is putting a big strain on his relationship as he is always working and is too tired to do anything due to him getting up 5 times in the night to sort the bag.
I have not seen W so low for a long time, he is very emotional and angry and so over tired.
We both have an appointment with our GP this week, I am hoping he will do something as I am not coping very well at the moment, I am exhausted and concerned for W's mental health as he has said he has suicidal thoughts. W has been asked by the secretary to get a letter off his GP stating his mental health state to help to move him up this mile long list, it will cost, but who cares!
We have discussed the holiday which we have booked for August, realistically we may have to postpone it, I suppose that is the least of our worries.
Sunday, 14 February 2016
(112) Not happy...
We had the appointment with the bowel surgeon a week last Thursday. After a few mmm's and arh's and advising W it would be close to 6 months from the op before they would reverse the Ileostomy, they agreed to put W on to the emergency waiting list. Brilliant, a light at the end of this tunnel we have found ourselves in!
W had to call the surgeons secretary 2 weeks later, he called a week later. Gutted, the waiting list is at least 6 months long from now, W was so upset when he called me at work. This means the fantastic holiday he has booked will be ruined, all of these years of living in the wrong body and now this to stop him from living life, I feel so sorry for him.
W's mood just got darker, he is feeling quite aggressive anyway and I am fed up of him biting my head off.
The Dr had already suggested that he could increase his citalopram, he has decided against it as he was so close to been off it completely just before this emergency, this would be another set back.
I suggested that he called his stoma nurse as surely he is classed as an emergency as he is feeling very depressed and that concerns me. W called the secretary again and expressed how this was affecting his whole life, his job and training are been affected, he is unable to go out for long periods of time, the constant alarm setting throughout the night and then he has to get up early to go to work and do the agreed 2 hour phased return to work he is absolutely shattered; this should have been increased after half term but W is still not eating whilst out, as he finds it very embarrassing due to the noises it makes and the constant filling up after, it's a long day with no food and drink.
W was referred to a counsellor, but like everything else there's a pathetic long waiting list and no dietician insight!
We are discussing whether or not to go down the private route, not sure how we would pay or even any idea to a cost.
There may be a fund raising plan on the horizon!
W had to call the surgeons secretary 2 weeks later, he called a week later. Gutted, the waiting list is at least 6 months long from now, W was so upset when he called me at work. This means the fantastic holiday he has booked will be ruined, all of these years of living in the wrong body and now this to stop him from living life, I feel so sorry for him.
W's mood just got darker, he is feeling quite aggressive anyway and I am fed up of him biting my head off.
The Dr had already suggested that he could increase his citalopram, he has decided against it as he was so close to been off it completely just before this emergency, this would be another set back.
I suggested that he called his stoma nurse as surely he is classed as an emergency as he is feeling very depressed and that concerns me. W called the secretary again and expressed how this was affecting his whole life, his job and training are been affected, he is unable to go out for long periods of time, the constant alarm setting throughout the night and then he has to get up early to go to work and do the agreed 2 hour phased return to work he is absolutely shattered; this should have been increased after half term but W is still not eating whilst out, as he finds it very embarrassing due to the noises it makes and the constant filling up after, it's a long day with no food and drink.
W was referred to a counsellor, but like everything else there's a pathetic long waiting list and no dietician insight!
We are discussing whether or not to go down the private route, not sure how we would pay or even any idea to a cost.
There may be a fund raising plan on the horizon!
Friday, 15 January 2016
(111) Update
We got through Christmas don't know how but it happened!!
W was still quite unwell but at least he was home.
We were concerned about his teacher training as he was contracted for two years and the first year would now overlap the second. The school were fantastic, very supportive and told him to return when he felt ready, hopefully he was aiming for the first week back after the New Year.
Unfortunately W was still not physically well enough, the district nurse was still coming out daily as he still had quite an open wound so he was unable to return.
The school had a meeting with the school's direct coordinator to discuss his return and deadlines. W had to make the decision to return as they were going to restart his contract in September!
The Dr was not happy but obviously couldn't stop him from returning, the Dr did put restrictions on his return to work note.
W started back last Monday on a phased return, once again the school have been very supportive and given him lots of flexibility, taking in to account what the Dr has advised. So far so good, this is good for his mental health too, as he is not moping around the house!
W is just doing a couple of hours in the morning, then he is working at home, this fits around the nurse calling in to do his dressings.
Good news- W now has his birth certificate.
W was still quite unwell but at least he was home.
We were concerned about his teacher training as he was contracted for two years and the first year would now overlap the second. The school were fantastic, very supportive and told him to return when he felt ready, hopefully he was aiming for the first week back after the New Year.
Unfortunately W was still not physically well enough, the district nurse was still coming out daily as he still had quite an open wound so he was unable to return.
The school had a meeting with the school's direct coordinator to discuss his return and deadlines. W had to make the decision to return as they were going to restart his contract in September!
The Dr was not happy but obviously couldn't stop him from returning, the Dr did put restrictions on his return to work note.
W started back last Monday on a phased return, once again the school have been very supportive and given him lots of flexibility, taking in to account what the Dr has advised. So far so good, this is good for his mental health too, as he is not moping around the house!
W is just doing a couple of hours in the morning, then he is working at home, this fits around the nurse calling in to do his dressings.
Good news- W now has his birth certificate.
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