my dad always used to shout at me if I was ill, he shouted he said because he cared, but it didn't feel like he cared when he shouted and it certainly didn't help

in the end I learnt to live my life without him. at least your dad did drive you to the hospital not say he didn't want you in his life at all

I always wished my parents could be kinder when I was ill, but I couldn't change them, couldn't stop my father's anger or my mother's coldness

there was an occasion when I badly needed to go to hospital but no one could drive (they had been drinking) and no one wanted to call an ambulance (considered a fuss). My GP was furious when she heard what happened and she made sure I had extra life-saving medications because of it, a decision which did subsequently save my life. It was in the days before mobile phones or I'd have made the ambulance call myself. 

you don't have to feel lonely though, look for peer support, find out if there are any volunteer drivers in your area who can help you

could you get up very early and catch a bus or get a taxi instead to some appointments – I appreciate this would not be easy, especially when you are in excruciating pain

I used to ask for later appointments whenever possible because of travel difficulties, sometimes this would mean a 9.15am appointment rather than 8am but it helped. Sometimes I would leave home at 5am (planning routes carefully to avoid risk of attack and going longer route if safer) to reach hospital for an 8.40am appointment. I walked many miles alone to a hospital because I was too scared to get in a bus or taxi during the pandemic and despite having severe athritis in my feet so that every step meant pain. I remember sitting down on a bench for breakfast and a rest in a park half way. Recently I managed to get over my fear of going on public transport, but found the bus journey difficult. I had to take my mask off because I panicked and couldn't breathe!

During the pandemic people had to attend hospital appointments alone. Even if I had been allowed to take someone with me, there was no one I could have taken. I had surgery alone during the pandemic. I spent a month in hospital with no visitors during the pandemic. Life can be hard.

I even turned down some further investigations (to exclude a different cancer) because I had no one who could collect me after anaesthesia, though I've since been told I could have just waited at the hospital. Now I have to consider whether to go ahead with those investigations. Unfortunately, I am struggling with other health aspects and think there are currently other things to deal with first (two urgent clinic referrals). 

Try and stay upbeat if you can. It is hard your father isn't more supportive, but it sounds as if that is the kind of man he is. Some of us have to accept that about our families. 

Really hoping you feel better soon. It's scary being unwell. Try not to worry about being a burden!

Thank you so much Rose. I'm really sorry about your father's anger and your mum's coldness. It's so true when people say that every child deserves parents but not every parent deserves children. It's really sad because there's so many people who would make amazing parents and don't get to have children.

My dad used to shout at me a lot as a child so I understand how much it hurts being shouted at. Thankfully because I'm an adult now, he has stopped but there are times he gets angry and wants to shout. It's sad that people think it's okay to treat children disrespectfully, they should lead by example. I do wonder how I have turned out to be someone who never shouts/ swears/ hits and cares a lot about being kind to others.

That's horrific that no one would take you and didn't want to call an ambulance. I am glad that the extra medication saved your life but it's really sad when you should have been seen earlier. 

I'm sorry that you had to have a surgery alone and had to spend a whole month in hospital with no visitors! I can only imagine that it's hard enough having to have surgery, let alone going through it by yourself. I feel bad that during the pandemic, I didn't really think much about those having to be in hospital by themselves but now I can't imagine having my problems during the pandemic. Were the nurses and doctors supportive during this time?

It sounds like you are having so many scares with your health and it must be so terrifying for you to turn down further investigations.

I think I'm going to try to look at the bright side that my family are offering to take me to hospital, even though it makes them angry having to wait long. I think they should reslise that if they don't talk angrily, I'd be able to appreciate it more that they take me and want to return the favour in other ways.

My brother has taken me today and we've had to wait more than 2 hours so far and he hasn't made one comment. He has asked me if I want him to come in the appointment with me and I said 'no it's okay' and he said it doesn't bother him at all, he wants to help me. It's crazy how different he is to my dad, I hope he can have children someday as I can imagine he'll be amazing.

Thank you so much for validating my feelings and sharing your experiences, it must have been hard to write about them. I hope you get better soon aswell xx

Thank you so much for your kind reply.

How lovely of your brother to take you!

I am really pleased you have other more supportive family members like your brother, grandma and aunt. 

The pandemic was a surreal time to be anywhere near a hospital. You were only allowed into the waiting area 10minutes before an appointment so if you arrived earlier would be waiting outside in the cold. Many people found this hard. At the entrance there was the dreaded temperature check. I would be so scared that if I were running a bit late and hurrying my temperature might go up a tiny bit (sometimes I can overheat as my body doesn't always cool down well) and I could have gone all that way only to be turned away at the final hurdle. When you are at a fast-track clinic and expecting to have a lesion removed that day, the thought of being turned away isn't a good one.

I was shocked when I found myself in the operating theatre with the doctors and nurses all in full PPE. It wasn't the usual theatre nurses – I'd had day surgery before and knew the set-up well. It wasn't even the proper theatre, but a kind of annex room. I remember being told to go careful as I got onto the bed in case it tipped. It was so flimsy compared to the proper theatre tables. 

The doctor seemed a bit anxious and only wanted to be working on someone where she could do the op sitting down. I got the feeling doctors were doing more than they usually did because the specialist nurses were helping out elsehwere. There was an extra person in the room watching, learning. 

I felt extremely anxious and when I mentioned this a nurse did talk to me and try and distract me, which was so kind. I think when you are open with the doctors and nurses it can help sometimes. 

It was so hard that I had to wear a mask the entire time I was in the hospital, including lying down in theatre. I have a condition that can make breathing difficult and I was terrified I might start with some nervous coughing. I didn't want to cause the staff anymore anxiety. I think at that time there was a lot of anxiety, you could feel staff were a bit frightened and not within their normal comfort zones.

I really felt for the NHS staff and how hard it was for them doing operations wearing not just extra gloves, but masks, plastic visors etc. How could they see? How could they do things like stitching?  I felt very lucky that I was getting seen and having a lesion that needed to be taken out removed. I decided I didn't care if the scar turned out a little messy. I was just so so lucky I was getting treatment.

When I was on the ward (separate admission), there too you could feel fear. But more than that there were obviously problems getting nurses in with a lot of agency or bank staff and at times very little English being spoken. I found it frightening, especially when I was suspected of having Covid – I didn't – and isolated from everyone else on the ward for 16 days (the longest anyone on that ward was in isolation because one of my Covid tests went missing and I had to have three negative ones before being deemed "safe"). I was also scared I might catch Covid while in this strange isolation area. There was a shared bathroom/toilet and another patient kept coughing in there. I had no cough when I went in but have a tendency to develop a bit of a nervous cough when stressed. 

I also did not have access to my usual medicines. That was the most terrifying thing. How would anyone know if I couldn't breathe? I actually had an attack and remember opening the door of the isolation area waving frantically for help. Then staff brought the wrong meds... No one seemed to have any experience of dealing with the respiratory medication I was on (it is an unusual prescription). They muddled it all up – not once but multiple times! It seemed that I could be getting help for one condition and dying of another. It was obvious the ward was extremely short staffed. And staff were constantly complaining how uncomfortable and hot they felt wearing the PPE. Everyone's vulnerabilities became very apparent. I overheard a lot of staff complaints – partly because I speak a lot of languages but also because I have exceptional hearing. Some staff were clearly very upset at what they were being asked to do or struggling to cope. There were a few raised voices between staff members even, something you would hope never to hear in a hospital. But people are human. People got scared.

It is good you can see things from all the different perspectives and do have some family support. I hope by the time you get to read this your ultrasound will be over. I hope all proves to be well. If not, then hope you get whatever treatment is needed soon as possible and with as little pain as possible. Take care, love Rose xx

Hi [@amelia98]‍ I am so glad to hear that you found another family member who could go with you, and it sounds like your brother was really supportive too, which is exactly what you need.  It's also great to hear that you have other more supportive family members, hopefully you'll be able to rely on them for emotional support if your dad isn't capable of doing that.

It's fantastic to hear that you want to become a primary school teacher, that's my profession! Do let me know if you're in need of any help or advice, it's a difficult career despite what many believe! Judging by your compassion and empathy, though, I think it's the perfect career for you and I think you'll be fantastic at it.

Good luck with all your test results, be sure to keep us updated. Xx

Thank you Rose. xxx

My brother was the complete opposite to my dad. I had to wait a long time to find out if I needed further investigations. Thankfully I don't seem to need further investigations, they gave painkillers and said to call back if the painkillers don't work.

It did take long to wait to get those aswell and my brother kept offering to buy me food and he said I must be so hungry which was really kind of him to be understanding while he had to wait so long. I was thinking about his petrol cost and parking cost so got food myself. My dad didn't think like my brother after my sigmoidoscopy when I had the plain diet for 4 days and then the fasting and disgusting laxative drink the day before.

He was just telling me about his toe injury and I was trying my best to listen and be caring (I was so hungry and sleepy ahaha so it felt hard) and told him he should go to a minor injury unit, but he didn't ask about my procedure which isn't a normal procedure that people get in their early 20s. 

The pandemic sounds like the worst time to be in hospital! I'm so grateful I didn't have problems back then. I can't imagine how hard it was for NHS staff to wear full PPE. The fact that there were other people breaking social distancing rules (including Boris Johnson) and increasing covid cases is just so selfish and irresponsible of them while all this was going on in hospitals.

It must have been so hard for you to wear a mask while you have breathing problems and that you were thinking about the staff. Yet there were people who pretending to be exempt just because they didn't want to wear a mask in a supermarket. 

That sounds so difficult being in the isolation ward for 16 days when you didn't even have covid. I remember finding it hard just isolating in my home for 10 days when I had covid. You must've have been so terrified of catching covid but I'm glad your tests came negative. Still must've felt like a waste isolating.

Oh my gosh, that sounds very terrifying to not have access to your usual medicines. And that you had an attack and they were muddling up your medicines. It sounds so incredibly stressful.

Thank you for sharing your experiences, it really does make me more grateful. My granddad had liver cancer in summer 2019 but first, we were told he had about 8 months left to live. Then suddenly we were told it would be 2 days and he actually lived for another 2 weeks before he passed. Of course, we wanted it to be 8 months at the time. But when covid started, we realised how lucky we were that we were able to visit him in the hospital and we were imagining how upset he would have been by himself and how he probably wouldn't have understood the situation. Now from hearing your side, I can imagine he would have been so terrified seeing all the doctors and nurses wearing full PPE and hearing the raised voices.

Thank you. I was feeling very dizzy earlier and took long naps (I'm guessing from the tablets) but thankfully feeling better now. I also had a gp call today as I have been having problems in my right knee for a year (I probably should've gone to the gp earlier) and it recently got a lot worse. They booked an appointment on the 1st September for a physiotherapy assessment. I hope that will go okay aswell. I googled my symptoms which scared me so I won't do that anymore ahaha.

Take care, you sound like you have a lot of problems and I don't know what to say, but I hope you get the help you need as soon as possible xxx

Thank you Rose. xxx

My brother was the complete opposite to my dad. I had to wait a long time to find out if I needed further investigations. Thankfully I don't seem to need further investigations, they gave painkillers and said to call back if the painkillers don't work.

It did take long to wait to get those aswell and my brother kept offering to buy me food and he said I must be so hungry which was really kind of him to be understanding while he had to wait so long. I was thinking about his petrol cost and parking cost so got food myself. My dad didn't think like my brother after my sigmoidoscopy when I had the plain diet for 4 days and then the fasting and disgusting laxative drink the day before.

He was just telling me about his toe injury and I was trying my best to listen and be caring (I was so hungry and sleepy ahaha so it felt hard) and told him he should go to a minor injury unit, but he didn't ask about my procedure which isn't a normal procedure that people get in their early 20s. 

The pandemic sounds like the worst time to be in hospital! I'm so grateful I didn't have problems back then. I can't imagine how hard it was for NHS staff to wear full PPE. The fact that there were other people breaking social distancing rules (including Boris Johnson) and increasing covid cases is just so selfish and irresponsible of them while all this was going on in hospitals.

It must have been so hard for you to wear a mask while you have breathing problems and that you were thinking about the staff. Yet there were people who pretending to be exempt just because they didn't want to wear a mask in a supermarket. 

That sounds so difficult being in the isolation ward for 16 days when you didn't even have covid. I remember finding it hard just isolating in my home for 10 days when I had covid. You must've have been so terrified of catching covid but I'm glad your tests came negative. Still must've felt like a waste isolating.

Oh my gosh, that sounds very terrifying to not have access to your usual medicines. And that you had an attack and they were muddling up your medicines. It sounds so incredibly stressful.

Thank you for sharing your experiences, it really does make me more grateful. My granddad had liver cancer in summer 2019 but first, we were told he had about 8 months left to live. Then suddenly we were told it would be 2 days and he actually lived for another 2 weeks before he passed. Of course, we wanted it to be 8 months at the time. But when covid started, we realised how lucky we were that we were able to visit him in the hospital and we were imagining how upset he would have been by himself and how he probably wouldn't have understood the situation. Now from hearing your side, I can imagine he would have been so terrified seeing all the doctors and nurses wearing full PPE and hearing the raised voices.

Thank you. I was feeling very dizzy earlier and took long naps (I'm guessing from the tablets) but thankfully feeling better now. I also had a gp call today as I have been having problems in my right knee for a year (I probably should've gone to the gp earlier) and it recently got a lot worse. They booked an appointment on the 1st September for a physiotherapy assessment. I hope that will go okay aswell. I googled my symptoms which scared me so I won't do that anymore ahaha.

Take care, you sound like you have a lot of problems and I don't know what to say, but I hope you get the help you need as soon as possible xxx

Dear Amelia,

It is good you don't need further investigations. I just hope your pain starts to ease. Strong painkillers can have side effects, but I expect you needed a nap because you got so little sleep the night before. It will probably take a few days before your body gets back into its natural rhythm. I hope this happens soon for you and the pain eases.

Your brother sounds really lovely. I am pleased he was able to give you support so you are not solely reliant on your father for lifts. 

I'm sorry you lost your grandad during Covid. However, I'm pleased you were able to visit him in the hospital and, as you say, he was spared a degree of fear and terror perhaps. It can be very difficult to predict how long people have sometimes. My own grandmother died within a fortnight of a cancer diagnosis and, sadly, I never got to say goodbye because my father asked me to wait a little before visiting but then suddenly she died. I wish now I had ignored my father's advice and trusted my own gut instinct. I used to be so frightened of going against father's wishes. 

It is good you have a physiotherapy appointment to help with the problems in your knee, although I am sorry it is yet another problem you have to deal with. It does sound as if you have had a difficult year. Physiotherapists are very good, I've found.

Thank you too for your good wishes. I think it will likely be a while before I get seen at the hospital. When I rang the Choose and Book service yesterday I was told there were no appointments and my details would be sent over to the hospital for me to be put on a waiting list. I asked how long the wait could be – weeks, months, years? – but was told there was no information about waiting lists. After putting the telephone down, I wished I had at least asked if I could choose a different hospital. Sometimes my brain doesn't process things very fast!

Last week when I had to call 111 because I'd had a bad reaction to a new medication, I was shocked that when a doctor called me (he said he was from the Walk-in centre), he said he had no details about my case. It was the same when I made a follow-up appointment with the GP. The GP said she had no record of my contacting 111 and that reports were being delayed because of the cyberattack. 

Take care, Amelia and I really do hope the terrible pain you've been experiencing eases up soon and that you were able to get a restful night's sleep. 

Love Rose xxx

Thank you, Rose. I decided to stop taking the painkillers as I kept getting dizzy and then I read on the information sheet to stop taking them if you get dizzy. 

I'm sorry that you lost your grandmother within 2 weeks of her diagnosis. I'm guessing you were closer to her than your parents. It's really sad that your father advised you not to visit and I understand why you followed his wishes.

That is really sad that you don't know what to expect and how long to wait. I find it really hard when I don't know what's next. I hate when I put the phone down and then wish I had said something else! My brain doesn't process things fast either.

That sounds really stressful that they didn't have your records or any details about your case.

Thank you, you take care as well Rose xxxx

Hi Amelia,

I'm sorry the painkillers made you dizzy and I hope your pain has now improved.

My grandmother was like me in terms of interests, whereas my parents were not.  Sadly I didn't see so much of her growing up as my mother disliked her. Our annual family Christmas visit involved seeing 6 or 7 different sets of relatives for an hour at a time on a single day, including a 200-mile drive. Not a good way for a child to see family! There would also usually be a another visit during the year to the beach, the zoo etc. And then there were major family celebrations, but those were always a bit "busy".

I hope you are having a good day today, Amelia.

Take care, Love Rose xxx