Continuing the discussion from New here? Feel free to introduce yourself here :
Thank you for taking the time to reply. I really appreciate it. Not telling anyone and just living in your own thoughts is difficult. Can I ask if anyone has used any private hospitals for tests or treatments?
After a very long weekend worrying, today the hospital phoned and cancelled my appointment. Apparently the consultant is unavailable Now I’m waiting for another appointment. I’m really struggling not knowing. I lost my sister to cancer and just need to know. So today I’ve contacted a couple of private hospitals for an appointment for blood tests. It will be the Manchester area if anyone has any information or thoughts x thank you again x
That’s really tough. Mine was cancelled this month to and I get the anxiety of not knowing. It’s so hard!. Did they give you any idea of how long you’re have to wait?
I’ve been lucky with the NHS so have never considered private treatment - even though I had private cover when I was diagnosed.
There may be others who can share their experiences. Please take care of yourself and remember the support line is at the end of the phone x
Hya x no. I asked but she said they would contact me. Hopefully soon thank you
So sorry to hear your appointment was cancelled. It’s hard enough waiting but I imagine doubly difficult to then have it cancelled.
I have monoclonal gammopathy of unknown significance (MGUS) and when I was told by my GP, she didn’t have time to explain what it was properly or for me to ask questions. I was terrified and being the control freak I am, decided to book privately as I needed to know more and I couldn’t wait to get some understanding of what I was facing, given my GP directed me to various cancer websites for more information!. I saw the most wonderfully caring haemotologist consultant who answered all my questions and explained everything over a 40 minute appointment. I love our NHS but sometimes they just don’t have the time to show the care I think many of them would like to (not their fault).
I get a sense from reading your post that you are someone who just needs to know? I feel for you and hopefully you will get an appointment shortly, one way or the other. Let us know how you get on.
Oh @Nik I am hearing of people having their appointments cancelled for all conditions and often at the last minute too.
Unfortunately we are in the holiday period and also mid all these NHS strikes.
I have had one cancelled for another cancer from this Jan - Sept and now till next Jan.
I have asked to be put on the list for a last minute cancellation.
It really, really does raise my anxiety levels.
Having lost your sister to cancer must raise yours even more.
Yes, it is the not knowing isn’t it and never ending waiting.
I also do not have any experience of going private and how easy it is to move back and forth.
Whatever route you take perhaps have all your questions written out.
The Blood Cancer UK support line is there for you if you would like to speak to someone on 0808 2080 888.
Please let us know how you get on an I really do hope you get another appointment soon. Be kind to yourself.
Thank you for replying. I totally agree about our NHS and at the moment, have no reason to go private. Not to mention the cost. But at this stage, not having a definite diagnosis, it’s taking over my whole thought process. I’ve a family and children and a holiday planned. Knowing one way or another will determine a few decisions. I’ve reached out to three Manchester hospitals and I’m waiting for a reply. Did you use a Manchester consultant? Hope you’re ok and your treatment is going well. It sounds like you also need to know what’s going on !! X
Yes I can imagine how stressed you are, especially with a young family. I’m not in the Manchester area, I’m in Leicestershire but I think wherever you go it’s the time you have to talk through every question or concern that helped me. Thankyou for asking about me…I’m not on any treatment at the moment but on watch and wait every three months to monitor my levels. I can sometimes put the next tests results out of my mind but as the time approaches I get extremely anxious. I think it’s the complete lack of control that I find difficult. It’s the not knowing thats worse than the knowing for me. Although it may be difficult for you, maybe it would be worth calling the private groups and asking if they have an earlier appt in another area? I asked for any appointments, cancellations across 4 hospitals and got an appointment 4 days later. I guess it depends if you want to travel?
Look after yourself and if I can help in any way and you want to direct message me, feel free.
Warmest wishes, Alex
Hi @Nik . I had appointments cancelled with regard to another cancer and my daughter (who works in the nhs) advised i check the hospital website and find the patient support email/complaints email. If you email them they have an obligation to investigate. You Just need to stress how upset you are and it is a diagnosis you are looking for. In my case i at least got a definite date for the appointment which eased my mind. It may be worth a try.
All the best.
Brilliant thank you ! Because of your comments I looked into the referral information on the NHS website. Apparently patients have a legal duty to see a consultant within two weeks and the hospital is obliged to find alternative appointments. I have just emailed our local hospital trust and explained. Fingers crossed something comes from it. I think the private hospitals must also be busy as I haven’t heard back from the three I’ve contacted.
Thank you so much for the information
Thank you so much for the information. I received a call with an appointment. Although it’s not within 2 weeks but 3. I’ve spoken to various private hospitals and I can’t get an earlier appointment so it sounds like everyone has the same idea ! Just a quick question about Lymphocytes on blood checks. I’ve a copy of my blood test here and am struggling to get my head around it. It says my total white cell count is 25.8 and Lymphocyte count 18.8. Red cells 3.28. The notes at the top say Lymphocytosis with smear cells present. Likely lymphoproliferative disorder. My haematology appointment is almost 2 weeks away. Can anyone recognise and understand these figures. All I know is they are to high and the Dr is concerned its a blood cancer. Again, thank you xLymphocyte
Sorry @Nik I am not medically trained but I am so glad that you have got an appointment, yes, it is late but with all the backlog and strikes you might be lucky!!
Perhaps write all your questions ready for your appointment and please keep posting.
Be kind to yourself.
Hi @Nik. I’m so glad you got an appointment. Lots of questions for your medical team there. Blood results are so complicated so write down all of your questions. If you want to talk through questions to ask, the support line is always at the end of the phone
I used to live in Cheshire and there used to be a private hospital in Cheadle called The Alexandra. I don’t live there anymore but I’m sure if you Google it, you will find out.
Good luck, I’m sure there must be a few in the Manchester area.
Chronic lymphocytic leukaemia (CLL)6
Hi. Thanks for that. I have actually spoken to them. The strangest thing was the consultant who I was supposed see next week, Nhs, before they cancelled, was the same consultant from the Alexandra. His private appointments were booked until September. It seems private is just as busy as the NHS. I’ve had to just take a step back and come to terms with having to wait another couple of weeks. From reading everyone’s stories, if my test is positive, I will have to get used to the anxiety of waiting. Hope you are doing ok and thank you again for letting me know.
Hi … yes I’ve had tests and investigations through private healthcare. My consultant haematologist is only available every fortnight so it does sometimes mean I have to wait but as a whole it’s pretty instant. He referred me also to other specialists for investigation so it did speed the process up hugely - I’m very lucky that hubby has health care. The consultant was the same one I’d have seen NHS though and from round here (Notts/lincs) I understand you’d be seen within 10 days if they felt it was urgent. Have you had a MRI?? You can book yourself direct to them online - they’re about £1500 thought. If you check on blue circle health care, there’s prices and diaries you can look at. Good luck with it all and try not to worry too much and hope things get sorted soon for you xx
Hi @Lucybeth a great big welcome to our forum and thanks for sharing your experiences of private healthcare.
I look forward to hearing more about you.
Look after yourself and please do keep posting
Hya. Thanks for your message and the info. I’ve resigned myself to having to wait. After contacting various private consultants and hospitals, I’m not going to get an earlier appointment. I should have gone today but they cancelled. I’ll know more next week. I’m just trying to put it to the back of my mind. Not easy but not a lot of choice. Thank you though. Ever bit of info I get helps x
Welcome to the forum
It’s so great that you can share your story.
I look forward to learning more about you
Hi, Really interested to read all. I have now had my 6 monthly check up cancelled three times! I am sure you all know the stress and worry building up to these appointments but from all your comments it would appear I am not alone. I have thought about private, but it would mean a much longer journey and as you comment, even there appointments are hard to come by. I guess I have been lucky to have been diagnosed and am now in remission, but it does not make it much easier as the “worry niggle” is always there. Good luck to us all and hopefully things will get sorted soon.
It is the build that so hard isn’t it, then for it to be cancelled. I have one at the end of August asJuly was cancelled. I’m keeping my fingers crossed!
I’m really lucky though - my consultant called and apologised for cancelling and to check I was ok to wait a few weeks.
I know some are not so fortunate with their NHS care but I can’t complain
Have you got a date for a new appointment @Mags1?