Hi Erica,
Thanks for posting & thinking of me. No, still no results. I don’t even have a referral letter for Thursday. I asked for this to be emailed to me on the day I spoke with the GP & I think that was a week yesterday but have received nothing. Probably more staff off ill with Covid. I emailed the Urologist & he said he is happy to see me without a referral letter so thats good news.
I am hoping to hear from the one stop shop this week 
but maybe not as Covid is still really bad here.
All routine surgery here has been cancelled now, due to the increasing Covid admissions. The NHS waiting list will never come down. I can understand most people wanting life to return to normal but it can’t with this virus still around. Very worrying.
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Hi Franko,
Thank you for posting. I don’t understand why they lifted all of the restrictions when Covid was increasing everywhere. In the paper, it said Cornwall was advising people to wear face masks ON THE BEACH over Easter!!! Yet your’e not required to wear one in shops/work places/public transport & medical settings….but in the fresh air?
In my GP practice, they now allow patients to go inside when cases are at their highest? No more waiting in the car park to be called. Dentists are open for non emergencies here too. Nothing makes any sense anymore.
I think it will be at least another week before I get my blood test results.
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Hi @Jude13 I am still thinking of you and wondering if you have any updates for us?
How are you really doing?
Look after yourself.
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Hi Erica,
Thank you so much for posting & thinking of me. I have still not had my blood test test results yet.
I did go to see the consultant & he emailed last night with a date for the 16th May. Be so glad to get it done out of the way. At least my bladder will be checked out.
Been feeling really awful & just have to keep going back to lie down throughout the day. It is nothing like a normal tiredness, maybe when you have had a late night or not slept well. I feel so wiped out just going up the stairs. I actually felt faint yesterday so really wish my blood results were back but everything is delayed now due to staff shortages.
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Yes @Jude13 at least your bladder will be checked out.
No fatigue is nothing like normal tiredness.
The waiting game continues for you and I think that is so exhausting as well.
A watched kettle never boils and all that.
The main thing is that you look after yourself and I find a few breaths of fresh air helps me very slightly.
Yes, there are staff shortages everywhere due to Covid and the NHS have to check themselves so frequently and if they feel any symptoms of any contagious condition they also have to stay off work.
Keep posting
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Hi Erica & Bananacake.
Hope you are both ok.
This is my latest. I know have to go for more blood tests! Some repeated. These new ones are not run of the mill so I googled!
CDH
CEA
CA 19-9
CA 125
CA125 PROL
INR
APPT ratio
COAGULATION SCREEN
HBA1C
FBC BLOOD FILM
Then just the usual renal/ liver/bone/thyroid
Plus…ESR Vasculer screen
Booked for these now on May 26th.
Repeating the myeloma blood screening too with the Bruce Jones urine, despite having normal results. Maybe March time? I have lost track. Is this normal? I am so worried now as thought it was good news that result was ok?
I have been referred for a colonoscopy, endoscopy on stomach & an abdominal ultrasound!
I still feel like rubbish so much have postponed bladder investigations. I don’t kniw what to think anymore.
Thanks
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Oh @Jude13 you have been googling, you know so much more than I do about my blood tests and other tests, if I need to know anything I just ask my GP.
We are such complex beings
As we have said before we seem to spend so much time awaiting, tests, results and appointments.
I was supposed to be seeing a consultant on Monday am and I got a phone call this afternoon, Friday, to say it was cancelled and to await another appointment in due course.
I expect you do feel extra rubbish, you must be so anxious, which I feel is so exhausting.
Look after yourself and be ever so kind to yourself to build your batteries up
Keep posting
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Hi@Jude13,I am not surprised that
you are feeling rubbish you have had so many tests cancelled in the past and now looks like you are on a roll again for more tests and as you say not expected and you have been "googling"have you tried talking with the BCUK support line just to get it all out and to ease your mind .Re the Bence Jones test being repeated it is usual to keep an eye even though it says 'normal’this is done just to see if there is any change.When a paraprotein was found in my blood I was told it was a low level but a year later it had increased so its a usual thing to check is my answer ,and thats good to be monitored.As @Erica says best to ask the Proffessionals rather than google and to look after yourself by trying to take your mind off it and do a nice thing .I know easier said than done but it does work .I find writing all my worries down helps to get it out of my head and I listen to the meditations on BCUK .What is you’re package@Jude13 ? Every day I have our wild bird family to feed,we used to have cats and a dog ,pets are a good therapy. If I have a project it helps too although Im not in your shoes I can understand its a worrying time for you. How are the fortisip going?Im rambling on but to say I am thinking of you on your journey .
Keep posting 
Bannanacake
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Hi Bananacake,
Thanks for posting. I just thought that with the Bence Jones & MM blood tests being normal, I would just be investigated for other reasons for the bone marrow findings.I didn’t know it would need to be repeated.
Thats the thing with no face to face GP appts, you don’t get all the info or get examined anymore. It was really, really hard to get a call back from the GP but at least I have the blood tests booked now. He is a very thorough GP ….if you are lucky enough to be able to speak with him. Others would not have not sent me for all these tests. He is quite new at the practice.
The blood tests appts are still not easy to obtain. Will be at least early June before I get results or even the middle with the extra bank holiday for the jubilee.
It’s just a shambles now within the NHS & no one seems to realise how bad it is until they have to use it. I had my MRI on the 23rd Dec & now it’s the middle of May & still nothing is certain. This is what I find hard to deal with, the limbo.
I will call the nurse here again & discuss thanks. Oh the Ensure drink is still a struggle & seems to be getting more sweeter every day lol. I feel so wiped out & think that is made worse due to the stress & worry caused by this waiting game.
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Hi @Erica. So sorry to hear your appointment has been cancelled at such short notice. That is really tough. I expect you are experiencing lots of different emotions at the moment. Hope you soon hear about the new appointment date. Thinking of you. Warm wishes. Willow X
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Hi Erica,
Sorry to hear your appt was cancelled. It seems to be happening all the time now throughout the NHS. My GP practice is still on emergency calls only! They are still stating staff shortgages. They had a Covid outbreak recently but it has been like this since the new year.
I have had toothache for the past week & an extraction is needed I think, due to no dentist for the past 2 years. Every morning that I rang the practice last week I got told all the emergency appts were taken! I have now booked a private dentist appt but can’t be seen until July. Told to ring every morning as they may have a cancellation!!!
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Yes, @Jude13 the waiting game is so worrying and stressful isn’t it
I have also just put on another post that late Friday afternoon I got a call to cancel a consultants appointment I had for Monday morning and I described it politely as frazzle, razzle, razzle and buckets of tears. I did not realise how keyed up I was for that appointment
Oh. that Ensure drink does sound sickly sweet, I think you are doing brilliantly persevering with it.
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Oh, @Jude13 your toothache sounds really debilitating.
Yes, after 2 yrs shielding I had to go privately too. No NHS dentists were taking on patients for miles around.
A new dentist opened up in town locally and I got in quick and got a very rapid appointment. I asked the dentists name first and I checked her on on the dentistry register, she had moved to the practice as she lives locally and has a young child. Result, I also got a deal where she gave me a check up, cleaned my teeth (carefully because of my Chronic lymphocytic leukaemia (CLL)) and did x rays as well for the check up price.
I really hope you get your toothache sorted soon.
Look after yourself
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Hi@Erica,just catching up on your news re the postponed appointment .Im so sorry to hear and i’m not surprised you cried buckets and were frazzled I know what I am like leading up to an appointment its like a rehearsal for a play trying to remember all your words and as @Jude13 says on the phone doesnt help, if it was on the phone.Its all the energy leading uo I hope you get rescheduled soon and that you are "refuelling "Yes @Erica and @Jude13 about the Dentist ,same here but you can at least get an emergency slot for extreme pain ,I really feel for you @Jude 13 ,just please keep trying .Ive made decision to go on dental plan and change Practice so my first app next week,Ive had hygienist appointments but all our regular dentists have left and not sure when I"d get a check up,its just one locum now for emergencies.
Thiking of you and @Jude13
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@Bannanacake please let us know how you get on at your new dental practice.
The dental plan my dentist, at the time, offered would not touch me !!!
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Hi@Erica ,I will ,I’m trying not to anticipate too much!
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Hi @Jude13 I have been thinking about you, how are things now?
Look after yourself
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Hi Erica,
Thanks for posting. Have you heard yet when your appointment will be after the cancellation?
I had my blood tests this morning 9am at my GP practice 7 vials!!! Thays the most I have ever has taken. I was due to go to the Hospital tomorrow for them but the practice finally allowed me an appointment with them. Less traveling so all good & finally done.
My ultrasound scan was cancelled yesterday though, due to a FLU outbreak, what next? I was hoping to get it over with & have all the results together but there you go. Thats how it is now, no appointment is guaranteed.
I still feel so wiped out but I think all the stress, worry & waiting is contributing to how I feel too. I am not sleeping until the early hours, then I keep waking up after an hour or two. I am trying meditation now but finding it so hard to stop my mind from wandering. I am hoping it will get easier with practice.
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Hi @Jude13 thanks for asking, no follow up appointment yet but my GP did see me and he has asked for me to be fast tracked.
7 vials of blood, that sure is in Tony Hancock terms an arm full.
Sorry to hear that your ultrasound scan was cancelled.
I wonder which one of us will receive an appointment that we actually get to.
I am not surprised that you feel wiped out, I think lack of sleep will do that, full stop.
But of course the lack of sleep is mostly due to all the stress, worry and waiting.
It’s a vicious circle that we could do without.
Good luck with the meditation, I have your trouble with the mind wandering, keep practicing and let me know how you get on.
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Hi Erica& Bananacake,
Hope you are both doing ok.Yesterday, I had some blood results but not all. The Pancreatic & bowel cancer blood test was normal as was the auto immune tests but the lab refused to repeat the Multiple Myeloma blood test!
Gp said as it was done in February the lab said I now have to wait 6 months.
No Bence Jones protein result so GP is chasing it up on Monday, along with the ovarian cancer blood test & some others.
My Prolactin is high, have no idea why but GP said it’s hormonal but that stress can eleavate it too
I have a Pituitary tumour unchecked, with no MRI since before the pandemic began? Consultants sec says she will ask about my MRI but still no appointment! Have left several voicemails & now his sec is on annual leave so here we go again.
I had my results emailed & despite not understanding them, I noticed my White cell count has dropped since March results but GP didn’t mention this.
Gp said Colonoscopy appointment & an endoscopy appointment to check on my stomach is in progress so just a waiting game.
Meanwhile, I am still losing weight & just wish I knew what was the cause. It’s been 5 months since my MRI with the findings on my bonemarrow.
Hobbling around today 
as I streched yesterday morning, I kind of twisted/locked my foot, which then caused cramp. It’s been throbbing ever since! No more stretching 
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