I will not come off particularly well in this blog. I know so many brave women whose situation is so much worse.
I've been struggling with breathlessness and pains in my chest particularly when I do anything or I'm lying down. I thought that maybe there had been a build up of fluid on my chest again so I went to my local hospital. This isn't the hospital where I'm getting my treatment they don't have an A&E.
I initially went to the walk in centre and they decided to refer me to the medics so I was sent up to one of the assessment wards and saw 3 different doctors who I had yo explain my symptoms to and I think if I had to say 99 one more time I'd go mad.
I was told I was going to have a chest xray that evening but I asked a nurse if I was going to have to stay in. I was on edge I hadn't come prepared for a stay in hospital I was just hoping for a quick xray then home. I couldn't settle in the hospital there were too many distractions and I kept having hot flushes. I kept wishing I could go home so I removed my canula, got dressed and told the nurses I wanted to go home. They wouldn't let me without seeing a doctor first I became stubborn and belligerent. The doctor was longer than expected so I tried to leave and the nurses chased after me and threatened me with security. By this time the doctor had turned up and I was ushered into a quiet room where I burst into tears.
The staff were really kind and tried their best to persuade me to stay but I just really wanted to go home and sleep in my own bed I just felt I'd spent enough time in hospital. I knew I was seeing my consultant this week.
I had a follow up appointment with my consultant on Thursday and saw one of his registrars. The goods news is the CT of my abdomen and pelvis has showed no change in my cancer and my pleural effusion seemed stable as well.
I told them about my symptoms and they have decided to book me in for a chest CT early next week and as a precaution are treating me for a blood clot so I have some blood thinners to inject myself once a day.
This might sound silly but I hope the CT scan shows something otherwise I'm going to start thinking its all in my head.
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ScardyCat40
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Did anybody accompany you to the walk in centre/hospital or did you do this alone? It sounds like alone, and then I think that makes the situation much harder for you. You have no one to discuss this with, vent frustration with or hatch tactics with. Apologies if I got the wrong end of the stick and you were with someone.
You must have been getting more and more worried on the days leading up to this, and I am not surprised you changed your mind when you were so unsure what the right thing to do was and you ended waiting around so long.
Please do not wish that the CT scan shows something. I believe it may be the lesser of 2 evils to tackle the physcology of dealing with this disease and what it does to your mind and imagination, then the physical reality of working out how to blitz disease.
I for one hope the CT scan is clear and that if it is, you can find somebody to help with you relaxation tecqniques or that you can turn to your GP (who should be a friendly familiar face) for support if you think something is wrong.
I was alone but visitors are only allowed during visiting times on the ward. I'm not wishing for more cancer just something treatable that explains my symptoms
I talked to the oncologist about returning to work (not that I have a job to return to) and he said he didn't have a problem with that and that it often helps. I did look at a jobsite last night but got a bit overwhelmed
As you know my cancer is not in remission and is high grade, but still I am doing a few 0.5 days work each week. My situation is a bit different in that it is the job I had pre diagnosis and people I have worked with for over 20 years, but still I can say focusing on something else (in my case IT problem solving) is good. It also gives you things to talk to your collagues about other than your health and reassures you that despite your body, your mind is functioning. I am able to work from home, with no pressure to visit the office which also helps. Still, if my ascites clears up, I will go and visit them - even though I am on chemo! There is a lovely nature trail at the business park and it is always a pleasure to walk around before coming home.
Hi ScardyCat, Hows things at home? are you getting any help? hope things work out and you will start feeling better, it probably did you good to let off a bit of steam. Love Sue x
I live alone which I really like I was living with my mum for a while but I prefer having my own independence. My family are very supportive but sometimes they fuss and that stresses me out more
It sounds awful for you at the moment, and you probably need to see your GP to see if there's any chance of counselling or someone to talk things over with? Is there a Macmillan centre near you. They often have someone and you don't need to be desperately ill to use their services, they have a "survivorship" programme. I know you need to look after yourself just now, but if the GP says you can work, is there anywhere you fancy doing the odd hour of voluntary work? There is often a real good feeling from getting away from your own problems and helping out somewhere else, it sort of puts things into a better perspective, that is only if you feel physically well enough, though.
Hope things start to feel bettter for you soon
Love, Wendy xx
Your feelings are perfectly understandable and I don't think the staff at the hospital handled it particularly well. You have a right to leave hospital at any time and if the environment is stressing you out, nothing seems to be happening and you have a consultant's appt soon it's quite a reasonable thing to do.
It is your choice.
You should have been given a form to sign to confirm you were discharging yourself against medical advice.
There's nothing worse that sitting around for hours waiting for something to happen. One problem is - I've worked in hospitals - staff are very busy. It's so easy to say 'in a minute' when you actually have no idea when something is going to happen. Someone could have helped you to arrange to for someone to bring in night clothes or found you some - usually there's a store kept on the ward. Someone could have found you a fan to help with the flushes. Some could and should have noticed your distress and talked to you to try to rationalize the situation sooner.
We all have good days and bad days. Many people feel that the compassion and caring has gone out of nursing.
It sounds like eventually the staff realised they hadn't handled the situation particularly well. Please don't blame yourself.
There's a world of difference between a lady with advanced cancer and a treatment plan in place deciding she's had enough of hospitals and she wants to go home and the archetypical A&E drunk who, bleeding profusely, decides to leave hospital as soon as he's sober enough to walk.
I'm having counselling through The Christie and my MacMillian nurse had also referred me to a cancer support centre as well. I'm also taking anti depressants.
I would like to do some voluntary work I'm currently waiting the outcome of a limited work capability assessment and I might wait for the results of my chest CT
Hello ScardyCat
I think we have conversed previously. I identify with you and sympathise with you so much. After nearly five years of positive "jolly" exterior I seem to have lost the plot over anything and everything. I wrote a blog about feeling low recently. You have every justification to feel and act the way you did. It is so easy for criticism but unless you have been there you don't really know. I have nothing but respect and admiration for all you amazing ladies on here and that includes YOU. I am thinking of you. My very best wishes and please don't beat yourself up. You like me are a human being with the emotions that go with it, and a very special one at that.
Hi Scardycat! What an awful experience! I get treatment in Leeds, though I live in York. If I have any symptoms or Feel unwell I am told to ring St James' and ask for the oncology bleep holder. This means I get to talk to someone who has access to my case history and even when I went into hospital with an infection on the other side of the country they talked to one another.
I know it doesn't help but, in future, do not go alone. You need support (N.B. not visitors) in such situations. They let my daughter stay with me on the ward in York when I had my biopsy and also my fluid drained so that I did not have to endure the discomfort alone.
This is a great site, use it to vent all that frustration.
Margaert and others are right sweet lady - it is perfectly normal to have wobbles, in actual fact my oncologist told me to expect a few now and again and I was also told to contact the oncologist department at all times.
I have also been told that if and when I am worried about anything at all my 12 weekly check up appointments can be brought forward.
Macmillan are also fantastic.
Remember you are a very special lady as we all are on here, cancer can never be compared to the A&E drunks or fighters after a Saturday night brawl. To be honest darling I do feel you should have been given priority attention.
When we feel poorly there is no place like the comforts of our own home and bed, waiting for long hours in an A& E department with uncomfortable beds and bright lights, the clatter of such noise is no place to rest.
I do feel that you had been neglected and I fully understand your need to go home when you are exhausted and uncomfortable and nothing is happening as regards to medical care.
I felt like this the day I made the 60 mile journey to the hospital to have my radium injection for kidney function test. I expect most of you will have had this test to check your stregnth before chemotherapy. The long waiting times in between the blood tests was trying to say the least.
I had already had my first chemo when I was sent for this test, I was very weak and very poorly. Also still weak from post op. The day my husband took me to the big city hospital in Addenbrookes I was too weak to walk, we borrowed one of the hospital wheelchairs which was mega uncomfortable. The hospital was as cold as the weather outside and I shivered with the cold and the anxiety.
I felt so poorly, I felt the need to ask for a bed to rest for the hour waits in between the blood tests. They were very kind to me, although the department had no rest rooms or rest beds available they were able to offer me a bed in the corridor. Wonderful! but I was truly grateful for anything! The bed was right next to the reception desk so there was little quiet or rest however, they turned down the bright lights for me and snuggled me up with lots of blankets and heat pads to warm me up. I did rest because the exhaustion was so debilitating. The nurse even came to my bed side to take the bloods rather than expecting me to walk to a private area for them. This was one of my worst times at hospital so I fully understand what you was going through and why you felt the need to go home.
I felt the same even though I knew what to expect and I wasn`t waiting in the same way that you were. + I cannot complain about the care and bed side manners from the nurses because they were brilliant to me when they knew I had cancer.
Please talk to us any time another wobble comes on - we all have them now and again, you are perfectly normal. I am too on anti-depressants but most of my problems are other peoples insensitivities - more chat about this in a new blog.
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Big Decisions... I need to hear any experience you’ve had
Shave and a haircut...2 bits!
why havent i had definite diagnosis,
Finally a bit of good news
Had my ultrasound & they confirmed I have a 10cm Cyst.
