WL Surgery 100% on my own

[Quinn]

I've been nosing around this forum for a few weeks now and everyone seems really kind and supportive so I thought I should join so I don't feel so alone.
I am 100% alone in this WL surgery journey. No one I know lives near me, most live abroad (as do my grown children). I will have no one visiting me in hospital when I finally get a surgery date. No one to help me get there or back home. No one to really chat about this at all. Last week I was given a new diagnosis of diabetes and then today I was told I have to wait about 5-6 months before I can even see a dietician to get through tier 3. I'm not sure how I feel about anything right now, other than terribly alone.
Anyone out there dealt with this on their own as well?

 

[SAM55]

Welcome. I did some of the things you mentioned alone, or was faced with doing them alone unless I did something about it. I live alone and my family are in New Zealand.

Time is on your side as the process doesn't happen overnight and you can start to research what support is out there for you.

Does anyone (including those who live abroad) know you are having it done? Emotional support via the internet is better than nothing. I decided I was going to be open with everyone about what I was having done, and have had nothing but supportive comments and help.

Practical things you could do are to find out whether your hospital runs a hospital car service, or find out if you would be eligible for hospital transport.

Are there any voluntary sector car schemes in your area? Check out with your local Community Voluntary Service organisation.

Check out with your GP Surgery if they know of any home from hospital services where someone can pop in and do the odd bit of shopping, or collect prescriptions.

Find a launderette that does service washes, preferably with a pick up service

Check out online grocery shopping

Ask your dietitian when you see them whether there are any face to face support groups.

Above all, tell your GP how you are feeling if you haven't done so already. It is normal to feel like this when facing such a big step on your own and everything is unknown.

There is lots of support on here. If you increase your profile so people know a bit more about where you are from and what hospital you are going to then you could get some more focused information.

 

[TiaLi]

Hi @Quinn and welcome! Our situations are very, very similar. I have no family here (they live abroad), and I did not want to tell anyone about the surgery either. In the end I told two people - my best friend (we've known each other since we were kids, but she lives abroad too) and one other friend who lives quite far away. I was comfortable telling my best friend, but the other I told more out of necessity, as I desperately needed someone to take care of my dog while I was in hospital (he is a rescuedog who is very nervous around strangers, there are only a handful of people I'd be comfortable leaving him with). They have both kept quiet and respected my decision to keep this a secret.

Everyone else thinks I've had a gallbladder removal/hernia repair. My family doesn't even know I've had surgery at all. I'm sure they'll figure it out eventually given the weight loss, but I just don't want to discuss it with people. I don't want this surgery to define me, and I don't have the energy to sit and try to explain everything to people who have never struggled with their weight. I just want to do this and move on with a healthier life. I can't focus on what I need to focus on if I also feel like I have to sit and defend what I did/am doing to other people.

Sometimes I think I was unfair on my friends who do live here in London in not trusting them, because when I ended up in hospital again with dehydration and vitamin deficiencies they all really rallied around me. They have popped in to check on me several times a week, helped me with groceries etc etc.

You and I even have the same surgeon! You're in good hands, Professor Patel is very experienced (and so nice). I had my bypass at King's College 10 weeks ago. I'm happy to answer any questions you might have about King's etc.

...and you're not alone. You have this entire forum as support. You still have quite a bit of a wait until the actual surgery, so you have time to prepare as well. @SAM55 gave some great suggestions above. x

 

[HidingDotty]

Hello Quinn

I understand some of your feelings about doing this alone. I do have family nearby but I plan to tell just 3 of them. I live alone and I don't have many close friends. Obesity can be very isolating. I have turned down so many invites that I hardly ever get invited to anything now. I probably would go anyway as I would be worried about walking and being able to sit down. I too have a long way to go as I've just started tier 3. Would love to gain a few internet buddies : )

 

[Quinn]

Thank you all so much for the replies! I'm completely isolated. So much so that I've changed my role at work so I can now work full time from home. This isn't entirely connected to my weight gain, I have been in a wheelchair on and off for over 10 years from Central Nervous system Lupus which causes a form of vertigo so walking has always been difficult & dangerous but the last few years the wheelchair HAS been come full time use now and I think its a direct effect of weight gain.
I tried everything. My son is a dietician and I have managed to not gain in almost a year by following his diet for me! But lose? Forget that. Just won't happen for me and at the weight I'm at now, 1-2 pound loss a week means I'll be dieting until I'm 92 before I'll get out of morbid obesity level. (That's not negative thinking, its logic and maths)
So now, like with most things, I am doing this alone because I figure the amount of friends who have "all the cures" to Lupus annoy me and I'm certain they will have "all the cures" to my weight problems as well and I don't think I can deal with that. But I am terribly alone with this.
At the same time I'm excited. I just want my health.

 

[Barne]

Hey Quinn

I'm sorry to hear you're feeling so alone. I can't say I'm in the same position as I have my husband to talk things through with. But I really sympathise for you.

I'm brand new here too, I've been watching for a while but only just signed up. I hope everything goes well for you and you find some comfort and support in these forums.

Keep us updated with your journey!

 

[TiaLi]

Thank you all so much for the replies! I'm completely isolated. So much so that I've changed my role at work so I can now work full time from home. This isn't entirely connected to my weight gain, I have been in a wheelchair on and off for over 10 years from Central Nervous system Lupus which causes a form of vertigo so walking has always been difficult & dangerous but the last few years the wheelchair HAS been come full time use now and I think its a direct effect of weight gain.
I tried everything. My son is a dietician and I have managed to not gain in almost a year by following his diet for me! But lose? Forget that. Just won't happen for me and at the weight I'm at now, 1-2 pound loss a week means I'll be dieting until I'm 92 before I'll get out of morbid obesity level. (That's not negative thinking, its logic and maths)
So now, like with most things, I am doing this alone because I figure the amount of friends who have "all the cures" to Lupus annoy me and I'm certain they will have "all the cures" to my weight problems as well and I don't think I can deal with that. But I am terribly alone with this.
At the same time I'm excited. I just want my health.

It is very difficult to lose weight when you are immobile, many people who end up morbidly obese do so because of various disabilities or medications rather than overeating. Just being able not to gain for a whole year is a great achievement considering you are now using the wheelchair full time! Friends usually mean well, but I understand what you mean about all the advice being annoying ("you need to eat less and exercise more". Duh, really? That thought never occurred to me!). If I were you I would, however, at least approach the idea of asking someone to stay with you the first week after surgery (whether it be a friend or a family member). I needed help just getting out of bed in the morning, and everything can be a bit of an emotional rollercoaster straight after surgery. Given your issues with vertigo as well, having someone there would be a lot safer. They will want you to get up and move around a bit every day (if you can walk) to help prevent blood clots. You'll also be given blood thinners to inject yourself with for 28 days. Asking for help is difficult, I know. It took me about a year and a half to reconcile with the idea that I really needed someone to stay with me afterwards. Like you, I am so used to doing things on my own.

The wait at King's can be quite long unfortunately, and Professor Patel's wait list is the longest of their surgeons I believe (they have 3). In a way, the time still flies by though. Once I was sitting there in the waiting room on the day of surgery I felt like everything was moving too fast!

 

[Mazza]

Hello and welcome @Quinn !

I must admit I felt a bit sad reading your post but rest assured you are amongst friends here, even if we are just virtual xx

 

[FeeBee]

Hey @Quinn and welcome.
I've told virtually no one besides my husband and best friend for a lot of the reasons mentioned. I also have complex medical issues and am disabled so know what you mean by people offering unwanted advice/cures and while it's often well meant very few people have several of these conditions and even the more common ones are different for everyone so what works for them isn't guaranteed to work for anyone else. It is isolating and difficult and I think we all can relate to at least some aspects of how you feel if that helps?

Plus I have always been so much more than my weight so I don't want to talk about it all the time you know? We can here though and swap experiences and advice but also get to know each other beyond our stats. You can do this and you don't have to do it entirely alone because you will have us x

 

[Andy74]

I'm new here also just wanted to say Hello & wish u all the best.
I also have mobility issues which are made worse by being so heavy and I'm in constant pain.
I'm going Private & having my surgery this coming Saturday.
Reading this forum has really helped with my research & helped me make my decision.
I've only told 4 people about my surgery 3 of whom are totally against it and try & avoid talking about it, so I kind of feel alone too.
Good luck with your journey.

 

[Quinn]

I'm new here also just wanted to say Hello & wish u all the best.
I also have mobility issues which are made worse by being so heavy and I'm in constant pain.
I'm going Private & having my surgery this coming Saturday.
Reading this forum has really helped with my research & helped me make my decision.
I've only told 4 people about my surgery 3 of whom are totally against it and try & avoid talking about it, so I kind of feel alone too.
Good luck with your journey.

I hope all has gone well with your surgery. Would love to hear how it makes a difference in life for you.

 

[Quinn]

Hello and welcome @Quinn !

I must admit I felt a bit sad reading your post but rest assured you are amongst friends here, even if we are just virtual xx

Thank you. I'm still a bit hiding with everything. I'm not sure I'm going to say anything to anyone. At least not yet.

 

[Quinn]

I'm not sure how long this is going to take to get a surgery date and I hear it is a long wait at Kings for Prof Patel which may be a good thing as I was told last week by the local tier 3 dietician team, that I won't be added to the list for about 5-6 months! And....in her very most condescending of voice possible, "We don't think its fair to others who are on the list to be bumped because you have a high bmi and got sent directly to tier 3 without doing what everyone else has to do." So that comment hit me really hard and I've not left my house in 9 days and I've just spent the sunny holiday weekend hating myself and relieved in a way that this is going to take forever because she's right......who am I to think I'm special because they jumped to right into tier 3 because I'm the fattest thing in the post code? These types of things said to me, smack me down to the floor of reality and is the reason I waited so long to get help. I cannot deal with the way it is assumed I am lazy, stupid and untrustworthy because its automatically assumed I'm out of control with everything not just my weight.
Herein lies the reason I am 100% alone with this.
I don't know how anyone else deals with it. But I just cannot seem to.

 

[HidingDotty]

Hi Quinn

Please try not to be too upset by someone who has an unpleasant attitude. It is not that you think you are special! Seriously, she really hasn't got a clue. In my experience people who are very overweight think that they are very far from special. It is the evidence that suggests people with a very high BMI should be considered for surgery as the first line in treatment. That is why NICE recommend this. I have been trying to loose weight for 40 years and it never works for long. Have you seen any episodes of Fat Doctor? Now there is a man that has the right attitude to obesity. Perhaps watching a few episodes might cheer you up a bit (if you aren't too squeamish).

You are not alone. Lots of people here are going through or have been through similar. I have a very high BMI and 6 months on tier 3. I am just going to find out what the hoops are and do my best to just through them. Do you have any idea what you are expected to do at the moment?

Dotty

 

[Quinn]

Hi Quinn

Please try not to be too upset by someone who has an unpleasant attitude. It is not that you think you are special! Seriously, she really hasn't got a clue. In my experience people who are very overweight think that they are very far from special. It is the evidence that suggests people with a very high BMI should be considered for surgery as the first line in treatment. That is why NICE recommend this. I have been trying to loose weight for 40 years and it never works for long. Have you seen any episodes of Fat Doctor? Now there is a man that has the right attitude to obesity. Perhaps watching a few episodes might cheer you up a bit (if you aren't too squeamish).

You are not alone. Lots of people here are going through or have been through similar. I have a very high BMI and 6 months on tier 3. I am just going to find out what the hoops are and do my best to just through them. Do you have any idea what you are expected to do at the moment?

Dotty

Hi Dotty, I have no idea what I'm suppose to be doing at the moment. I suppose wait to hear about an appointment for tier 3 in 5-6 months time. I did ring my bariatric nurse and tell her it would take a long time just to start tier 3, she was not happy and said she is going to speak with Dr. Patel about this and let me know. Until she contacts me again I will continue to follow the diet I've been on for almost a year now. Its not helping me lose anything, but I've not gained so I'll just keep doing this. My self esteem is garbage at the moment, its actually worse since I started this WL surgery journey; I'm assuming its because I have finally admitted I need help with it.
I'm happy to have found this place and the helpful people here.

 

[HidingDotty]

I can see why you feel alone. That is a long. I am not sure where you are but perhaps someone in your area might be able to help by sharing their experiences. Have you tried a search? I am in Leicester but there doesn't seem to be much shared on the process here. It was pretty quick though, from GP to tier 3 dietitian, just a few weeks. Having said that, only 20% get referred for surgery.

 

[TiaLi]

Hi Quinn, I'm a bit confused - are you seeing the dietitians at King's, or somewhere closer to where you live (since you said "local team")? Even at King's a referral to tier 3 will take several months, that is not unusual unfortunately. For me, the actual tier 3 part was however very quick, it was basically just a couple of meetings with the dietitians and then the group seminar.

You won't be added to the actual surgery waiting list until you have had your meeting with Prof Patel after completing tier 3. So is the 5-6 month waiting time you are referring to how long it will take you to start tier 3, or how long they said it will take you to get added to the surgery waiting list? Is it possible you misunderstood what the dietitian meant with regards to the timeline?

 

[Quinn]

Hi Quinn, I'm a bit confused - are you seeing the dietitians at King's, or somewhere closer to where you live (since you said "local team")? Even at King's a referral to tier 3 will take several months, that is not unusual unfortunately. For me, the actual tier 3 part was however very quick, it was basically just a couple of meetings with the dietitians and then the group seminar.

You won't be added to the actual surgery waiting list until you have had your meeting with Prof Patel after completing tier 3. So is the 5-6 month waiting time you are referring to how long it will take you to start tier 3, or how long they said it will take you to get added to the surgery waiting list? Is it possible you misunderstood what the dietitian meant with regards to the timeline?

I'm waiting to see dieticians in Kent as I live here fulltime now. But the referral to tier 3 here in Kent is going to take about 5-6 months just to get ON the list to get an appointment to see their dietician. So my bariatric nurse isn't happy as this could mean almost a year waiting for a surgery date as she said after tier 3 is done it about 3 months before I get a surgery date.
At this point my head is just spinning.

 

[TiaLi]

Ah ok, when you said "get on the list" I assumed you meant the surgery wait list. Any chance you could go with the dietitians at King's instead? Obviously it'll be a bit of a drive, but at least you'll get in quicker (and judging by what the Kent dietitian said she seems to be somewhat of a @#!#'#@).

It'll be longer than 3 months after the completion of tier 3 that you will get a surgery date I'm afraid. They always quote that (18 weeks to be exact) because that's the guidelines in terms of how long the waiting list should be. They told me the same thing - in reality it took 7 months to get a date once I was on the list. I was put on the surgery wait list in June 2016, told the wait would be 18 weeks (ie October), got my date in January 2017 and had surgery in March 2017.

 

[Quinn]

UPDATE: 08.08.2017
I am still on the waiting list to get on the waiting list to start tier 3. I spent 3 weeks calling them everyday, and eventually got someone on the phone yesterday; which was from my work phone so now I have the pleasure of going back and listening to everything said in this call as its recorded. (I've since deleted it as its painful and serves no purpose)
Here is her reply verbatim:
"We have people who have worked through all the tiers, which you have not done, you got to skip all that and we are not going to bump someone who worked harder than you have just so you can have a special spot. Sorry but that's the decision of management here and you just have to wait, we will send you a letter. You can stop calling."
She was rude and I found that comment about others "worked harder than you have" just completely out of order.
She doesn't know the thousands of £ and hundreds of hours I have spent over the years with my weight.
So after she said her final sentence "it could be that you wont get a letter from us until after the holidays" and hung up on me, I rang the bariatric nurse at Kings and told her what was said. She took this to Doctor Patel and he said its a ridiculous time to wait considering my newly acquired diabetes and thyroid issues.
So now I have an appointment coming from Kings and it seems I will attend their tier 3?
I'm not 100% sure on what's next, but one thing that WAS really reassuring, when I called and told Kings that the tier 3 wait list was possibly 8 months or more and the harsh statement as to why, Kings jumped to my defence and said "lets not work with them anymore now, even if you were given an appointment with them tomorrow its just going to feel awkward and be uncomfortable for you now with that type of response from them."
Ok so the wait is long and what happens next isn't entirely clear and that was some uncalled for comments but the fact that the Kings team stated that dealing with this local group would probably be uncomfortable, has made me feel that they care about my emotional wellbeing as well. A great stress has been lifted, I no longer feel like some random name on a list, if feels like someone actually cares about me as a person and putting my life in their hands with pending surgery feels a little less terrifying.
I've still not shared what I am doing with anyone though.