That week I had where I realised things are different, now.

Hi all… Please just be careful whilst reading this. I talk about the cyst again and a couple of other things that might be difficult to read. Stay safe.

 

 

So, Sunday came round and we did manage to fly out. Getting through the airport without assistance was hell. I actually asked when we were on the plane if I could have assistance at the other end, and luckily I was given some- I was wheelchaired right into the Dutchman’s arms. I was so thrilled to see him: we all were. It was such a relief to be able to hold him close and kiss him again. We always miss how kind he is, and we crave the physical closeness he gives. It makes us happy to be able to reach out, grab his hand and kiss it, pull it close to our cheek and feel his fingers on our skin. We love that he is so patient, so kind.

 

He wheelchaired us all the way to the CARDIS (yes, that is what we have decided to call his car! He could fit a swimming pool and a library in the boot!) and drove us home. I kept looking at him, smiling. We knew that even though our journey had been very difficult, we had him now. What could go wrong?

 

Going back to his house, it was great to see his parents again and the cats (he has two adorable fluffballs, snuggly and also full of character). It was amazing to climb into bed next to him, to sleep wrapped in his arms. This is what we are all working towards- all four of us want to end our day asleep next to him every day.

 

The next morning (Monday), sadly, we woke up in a lot of pain and discomfort. Turns out that if you will a cyst to go away by just doing stuff you could do before you had it, it screams bloody murder at you the next day. Mostly,. the day was spend lazing around in bed, cuddled up next to the Dutchman, or in the comfortable chair next to the computer where we both played XCOM. Damn, that game is fun. It helped that both of his parents are completely happy to let us just chill together, and they enjoy my presence in the house. We all like being there- it’s such a calm, restful environment.

 

Tuesday was a little better. We started to be able to walk with a cane. The pain was still there, but the Dutchman helped us to walk and we managed to overcome the pain for long enough to go and visit his auntie. She’s not well at all, and is thinking of leaving her house and going to live in a care home. She would like the Dutchman to inherit the house, and all of us liked meeting her. Her and her husband were huge fans of animals, have been all their lives, and they used to work for an animal rescue centre. They own a Bosnian dog, who has obviously seen horrors that no person or animal should ever see- she flinches when you make a movement. It doesn’t have to be sudden. Slowly, however, she began to trust us more and more, and eventually wanted the Dutchman and I to take her for a walk as we were leaving. The Dutchman’s Auntie wanted him to have the house because two cats live next door, and she is convinced that he will look after them when their owners can’t (or won’t, they apparently sleep in a box filled with hay in the garage. If you don’t want to have a pet in the house, don’t buy one!). I also think she wants him to have the house because of the kind person he is, and because of the rough time he has had finding employment in the field of work he studied in.

 

Wednesday morning wasn’t too bad again, but  showering and brushing teeth and washing our face was, and is, such an effort. The Dutchman helped us by supporting us in the shower. This is something we are not used to, seeing as we all are scared of the shower in varying degrees. Me, nineteen, I hate being touched by anyone but me in the shower. Twenty-six doesn’t like soap in her eyes and ears and being unable to defend herself. Fifteen isn’t comfortable with nudity, and Fourteen still feels a little strange when getting in the shower with a guy- she feels like she will be told off at any moment, although she wants to be in the shower. However, the showers we all had with the Dutchman have taught us something: this can be a nice process and it doesn’t have to be frightening. He lets us do what we need to do (like washing our hair, which we hate anyone but US doing) and helped us stand up when we felt weak.

We started to realise that actually, what he’s done for us all week has become our carer. We were horrified. We are trapped like this for no discernible reason, with palpitations and erratic heartbeat and nausea and anxiety and crippling pain, and he is shouldering the brunt of caring for us. We all realised that and were horrified.

Going to the house of a friend of his for dinner was a lovely change, and meeting her husband and three gorgeous kids was fantastic. I am still surprised we all managed to stay awake as long as we did. We loved the meal, although we were in pain, and it was so good to meet his friend- the Dutchman has talked a lot about her.

 

Thursday, and time for my parents and sister to come over. Again, we had to use a wheelchair, and the Dutchman pushed us all the way through the airport. Picking up my parents, we realised we were too tired and weak to get out of the chair. We all had food together, where the four of us ate a sandwich that would normally have been no problem for us, but right now it filled us up too much. The Dutchman made my parents, sister and I laugh, and there was light-hearted chat despite the wheelchair at the table. Having them meet the Dutchman’s parents was brilliant. Sis, the Dutchman and I went to the local supermarket, complete with cane, although I had to rest on quite a few occasions. We all had an absolutely brilliant time and a great laugh. We all agree, the four of us, that Sis and the Dutchman couldn’t be better suited as brother and sister-in-law (eventually!).

 

Friday resulted in more exhaustedness, because we had walked the day before. It was good, however, to be with our two families as they made friends and got to know each other. The sun had begun to shine pretty forcefully, and we had an outing to the local shop. The wheelchair came in super useful again, and I eventually became the trolley- we forgot to get bags, so we used me instead! Spending time out in the wheelchair slowly became more bearable, even more fun, and we explored Leerdam in the chair with the Dutchman pushing us around. Sis came too. We stopped off for a small pastry in one of the local bakeries, which was pretty awesome. The sun was warm, and there was a slight breeze. It got so pleasant outside that we ended up being able to sit out after dinner.

 

Saturday dawned and I struggled to get up. We all took turns that morning in ‘fronting’, which is our term for taking charge of our body. The Dutchman helped us change and brought us our meds, as usual, and we ended up being ready for our outing to a town on the German border. The reason? A friend of mine that both 19 and I have known lives in Germany now, with his partner (who is German, that should explain a few things!). The city we went to was the closest to everyone involved. We had the best day out, sitting in the chair, although it got incredibly hot! It was nice having all the family out too, there to enjoy the sun and meet our friend and his partner. The Dutchman has met them before and gets on like a house on fire with them, and we all have a lot of fun together. It was so lovely to be with them again, we didn’t realise how exhausted we were until we got back home again. We actually went out to eat that evening too and suffered serious pain from the cyst- reaching up to get plates absolutely floored us. Tea was delicious though, and the Dutchman kept wheeling us wherever we wanted to go in our wheelchair.

 

Sunday was a day of sheer exhaustion. We looked at the amount of medicine we had taken all week and were shocked to realise we were running out of some of it already. The Dutchman never stopped being kind and thoughtful, helping us with anything we needed. It doesn’t matter, he never tires. We had some laid-back fun, enjoying ourselves with our families and having a good laugh. In the evening, my parents, sister and I all piled into the Dutchman’s car and we went to see his brother and his partner, and their new little girl. She was born at the tail end of April, my birthday month, so we are already April girlies together… not only that, we will LEGALLY be her auntie when we are married to the Dutchman next year. She was gorgeous, so tiny and perfect, those little fingers grasping for mine already as she lay in her crib. Her mother is the perfect mother- she is so well-prepared for her, so perfectly able to respond and she knows instantly what cry means what. I’ve never met anyone else who gets tiny babies like we do, but she certainly does. In some ways, tiny babies are infuriating and occasionally impossible to figure out, but we have always found them easy… well, easier than two-year-olds!  We were all enchanted, family included. The Dutchman was the picture of the proud uncle. It made us melt.

 

Monday came, and so did horrendous palpitations. They were so bad, we spent most of the morning almost passing out, with the Dutchman snuggled up to us on the sofa, helping us be distracted by XCOM. We rang the airline I flew with and discovered that we needed to go and get to the airport earlier to ask for assistance, which we did after the Dutchman had packed our case up for us. He was amazing- he managed to fit in our new purchases, and also the wool that Sis had bought for knitting with! There was a LOT of it. The airport had, when we arrived, already been notified that I would need assistance, and what then followed was a very pleasant afternoon spent wandering (or wheeling) round a couple of the airport shops, sitting waiting for my parents and sister’s flight in a cafe, then the Dutchman and I waiting for ours together. We did not want to say goodbye to him. We had, despite things, had a brilliant week together.

 

He kept reminding us that we were not a burden. Supporting us in the shower, we were strangely unafraid. We only needed to ask him for something and he would run and get it for us. He carried us to the wheelchair when it arrived. He is everything I thought didn’t really exist in the real world, but we are all finding out that the younger two’s hopes for a true gentleman are, in fact, completely justified.

TW: (Possibly) Cyst-related news and explanations

So, for those of you who are kind of new to this blog, I’ll give you a brief run down of what’s going on. The trigger warning is there just in case anyone has issues with medical stuff. Also, for anyone who is really new, we are multiple, and have a fiancé

 

So, basically, I last had these cysts pop up in August 2015. I wrote a detailed post on it, have a browse through the archives. The cysts were found on a scan, and I was told that they would go away by themselves. I was supposed to wait and have another scan to check they’d gone. I never had the follow-up scan done- we missed the appointment.

This episode started in May, one of our worst trauma months. We were eventually admitted to hospital and had to have an internal exam, which was stressful and very upsetting. Luckily, we seem to not be experiencing any further psychological effects from that, possibly because the Dutchman was there, holding our hand and letting us know we were ok. He has been incredible.

In hospital, we had a scan, which showed there was a cyst- it was nearly 6cm long. We had felt there was something wrong and hadn’t had a good appetite in ages, which has had an impact on us now- we have lost muscle on our legs.

The hospital and the staff seemed to want to tell us that the pain we were in would go because the cyst was normal. They couldn’t figure out why we were in pain and blamed it on our monthly cycle, which is bullshit because we are on the pill…

They dismissed us and our pain summarily, because apparently the cyst would go and we would be fine. We were discharged with painkillers and told to go home and wait.

So we have waited.

Contradictory things we have been told include the following:

“The hospital isn’t what emergencies are for, that’s what A and E is for.”

“A and E isn’t for emergencies, you need to go to your GP for immediate help.”

“Why haven’t you gone to the hospital? We at the GP surgery aren’t here for emergencies. A and E is for emergencies.”

“If you’re in pain, go to A and E. They are for emergencies.”

“Ring your doctor and make an appointment, they will help you. Ringing here at the hospital won’t help you.”

A and E: “We can’t do anything to help you.”

GP: “We can’t do anything to help you.”

Hospital: “We can’t do anything to help you.”

 

What do you guys think we should do next?

We have been on all of these medicines, at one point or other…

•Ibuprofen

•Paracetamol

•Codeine

•Co-codamol

•Naproxen

•Diclofenac

•Tramadol

We are on Loestrin 20, which is a birth control pill. That’s a combined one. We have been on Progesterone Only Pills before this one.

We wondered whether anyone out there has any advice, because we have really got no idea what to do next. Our scan is on the 27th, and our follow up appointment is on the 28th.

We would love answers.

Struggling on.

I just want to let everyone know that I’m struggling today. I’ve been putting a brave face on my pain, but today, I’ve just had enough. I’m tired and depressed and struggling with everything. July is on its way, which means re-living losing the baby. Right now, with all this pain too, I’m dreading it.

Just asking for a little support, and hoping I get answers soon.

TW: You don’t need a second opinion. Here, have these pills instead…

TW: The NHS, hospitals and the cyst get mentioned. Also suicidal thoughts. Stay safe all x

 

 

 

The days drag by. We are eating pills each morning to try and make it to the end of the day. The same doctor who told us she could do nothing for us on Wednesday also prescribed two boxes of tramadol to us.

When we got home, all we wanted to do was down them all. The Dutchman was on the phone to us, so that didn’t happen. But, just for a moment, the thought was there.

The NHS seems to be staffed with assholes and also caring folk who are held back from doing their job by red tape. Consultants are mostly on holiday or on “sabbatical”, which I’m fairly sure is code for holiday. I’ve been struggling with chronic pain for almost a month now, and I recently was told about someone who works for my auntie who is on a waiting list for three MONTHS for a scan. She has right side heart failure. She could die at any minute, yet they refuse to do anything.

Junior doctors are being legislated out of the NHS and many of the older doctors are leaving in disgust. Private healthcare is so expensive, nobody can afford it.

There are people out there dying, and David Cameron is more concerned about lining his own pockets.

This country is worse off, debt and deficit wise, than it was before he took over. The NHS is crippled, and people are being turned away with a handful of painkillers, desperate and out of options.

You do the maths. It’s not a pretty picture

I’m apparently waiting for a scan that could have been done LAST WEEK, but I was discharged instead. I was told that the hospital was not an emergency service, and to go to the GP. The GP said she was not an emergency service, and A and E are an emergency service. A and E have told me that they’re not an emergency service, and that the GP is where I’m supposed to go.

Never mind the fact that the waiting list is three weeks to see a doctor…

Unless something changes, there will be no national health service. Right now, I can see what damage has already been done. It’s more like national service- you go in and wait, and eventually are handed the means to destroy yourself.

The Dutchman is always, always by our side. He never stops talking to us, he makes sure we are safe, and has helped us by ringing various people about appointments. So far, I’m being fobbed off with a scan. He is angry with the people supposed to take care of us, as are we.

Our usual doctor is on holiday- without her, we wouldn’t even be on hospital radar right now. If she’d seen how much pain we were in, she might have done something better than been not too sympathetic and handed us pills. She goes above and beyond.

Here’s hoping the cyst bursts. That way, at least someone would take us seriously… Or not. They’d probably tell us that we just needed to wait at home and see if it would go by itself. Here, have another packet of tramadol, and no answers.

TW: No help from anyone

Just a word of advice- don’t get sick in the UK. Just don’t. I am not allowed a second opinion of the golf-ball sized cyst on my ovary, I’ve been told to go to the GP if it gets worse or stays the same. The GP today then told me that I should go back to hospital with the cyst and parroted the same thing as everyone else- apparently this will go on its own.

I can’t fucking work! All of us are in horrible pain. We used a wheelchair to get around last week. We can barely walk unless we use a cane. We are feeling sick a lot, we don’t want to eat, we are tired after a tiny bit of exercise…

But no, apparently we are just a set of ovaries and might want kids some day, so there will be no surgery to remove something that is fucking up our life RIGHT NOW.

Don’t get sick in the UK, just don’t.

TW: Hospital.

Hi all- massive TW for this post. We discuss hospitals and various traumatic things that happened there. Shout out to the nurses, who were wonderful in every way.

Monday the 9th May. We are in the gym, feeling happier than we have done for a long time. I’m on the leg curl machine, and pull myself up higher on the machine- there’s a sharp pain on the right hand side of my lower abdomen, and suddenly a gush of blood. We freeze. What. The. Fuck.

The pain is too bad to do another set. We are upset as we climb off it, and head for the chest fly machine instead. We do a couple of sets before the pain gets even worse, and then realise we aren’t well enough to keep going. We finish up, go home, and try to deal with the pain. We go and teach, too.

Tuesday 10th May. The bleeding and pain is worse. We feel awful, and triggered, and the younger ones have realised that we are not on our period. What the hell is happening, they want to know? I explain to them that it’s the ovarian cysts that caused us so much pain last August, and they are still scared but get it. Nineteen is feeling upset and unable to eat. We still go teaching, in awful pain, but we feel like it might just go away by itself… We hope.

Wednesday and Thursday, 11th and 12th May. The pain is pretty much unbearable. 19 has her flip out and we are all exhausted, in pain, wrung out and needing rest.

Friday 13th May. It gets so bad, we call the NHS non-emergency number. They are concerned by our symptoms and try and get an ambulance out, but we end up going to hospital driven by our Mum. We’re all scared at this point. The Dutchman arrives, and we spend the whole time after mum has to leave in his arms. Sadly, we are discharged with painkillers and sent home to book another ultrasound scan.

Saturday and Sunday, 14th and 15th May. We exist in a haze of pain. Making breakfast on Saturday, we pass out and the Dutchman carries us to the sofa. He continues to care for us in every way over the weekend, taking our minds off the horror that’s going on in our own body.

Monday 16th May. We end up at the GPs, and she’s so concerned that she sends us to the hospital. We have to go through an internal exam. It’s one of the worst things we have ever experienced. The Dutchman kneels beside our head, squeezing our hands and telling us it’s ok, we are safe. It hurts. He tells us he’s still there and he loves us, and he isn’t going to go away. We are admitted and they arrange an ultrasound scan for the next day. The Dutchman has to leave, but he Skypes us when he gets home to make sure we are ok.

Tuesday 17th May. The ultrasound shows a golf-ball-sized cyst on our right ovary, just like we predicted there would be. We knew there was a cyst. We have all been feeling unable to eat, and the pain is on the one side. However, we have a sinking feeling about this. Although there’s no cancer detected, we suspect that it is probably not going to make the doctors do anything. Later on, we try to get out of bed because we think we’re going to throw up, and pass out entirely. When we come to, there’s a concerned team of people present and a doctor there, and a drip and cannula in one hand. The younger ones hate that. It hurt for them to get it in because our hands are so bony. Nobody knows what to do about the cyst, nobody has any information or advice for us. We are point blank told that there’s no way to prevent cysts and that it’s not being drained.
Wednesday 18th May. We realise the only way to get any advice is to ask for it. There’s an amazing nurse who eventually comes to talk to us and give us options to help prevent the cysts from coming back. We are released with a handful of painkillers again, and told not to worry, all women get cysts due to their monthly cycle and sometimes, some women’s hurt a bit. This is past that, though. There’s a golf ball sized cyst sitting inside us and refusing to budge. It’s been there over a week. We are all scared and hurt and upset, nineteen is fuming, we all are at our wits end.
Thursday 19th May. A week since nineteen had her meltdown. The cyst is still there. We are glad to be home, but the full horror of hospital has started to sink in and we’re terrified of what we remember. We all continually flash back to the internal exam. It was horrendous. For any person who hasn’t been through trauma, it would have just been embarrassing and uncomfortable, which is bad enough. For us, it was torture.
Friday 20th May, today. We are sent a letter informing us that due to the fact we had been in Accident and Emergency and were prescribed medicine, we are to be charged for this. £8.40, “as you would be if you had visited your GP.”
The callousness of this hurts us. We were in A and E because we were really ill, not swanning in complaining of a common cold. We don’t mind paying, but there was no expression of sadness for us having to be in A and E, and the letter is callous in its tone. Moreover, we are scheduled another scan and an appointment for something not mentioned in the letter in June. JUNE. That’s a long bloody time to be left in pain. There’s a little unconcerned light-hearted statement about having an internal scan, and the probe would be, “about the size of a tampon. I don’t care. None of us do. We are not having anything like that happen again. They saw the cyst on a normal ultrasound, that internal one is unnecessary and downright abusive.
We can’t handle this. We have been thoroughly retraumatised by the whole experience. The Dutchman has offered to ring them for us and find out why there are two dates on the letters, and to explain that there may be adverse reactions to demanding inappropriate scan techniques. The letter mentions the normal way of scanning first, which we are fine with. Why is there the need to be so flippant about the internal scan?

 

We’re all really struggling and upset still. On Sunday we are supposed to be flying out to see the Dutchman. We hope that it works out ok, if the cyst bursts in mid-air we will be in trouble.

 

The only thing that’s comforting us right now is the thought that in two days, we get to be with him again. There’s our dog curled up with us, and our family have been very supportive. We are just praying that the pain gets no worse.