I am upset because I received notification that my watch and wait appointment which was to have been next week has been cancelled. The new date is in a month’s time but it clashes with another appointment. I was supposed to be on three monthly reviews for MGUS but this has been extended to four months and now to five plus. I haven’t seen my consultant for a year now, but have been seen by other doctors. All very nice but I feel that the standard of care deteriorates when this happens and drifts away from the plan. Whilst my bloods have been fairly stable upto January, I have recently been diagnosed with osteoporosis and want to discuss what this might mean for me in relation to my mgus and the family history of myeloma.
Helen
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Dear @helenfwallace
Sorry to hear that your appointment has been cancelled and rearranged for a time when you have already got an appointment. May I ask whether you are able to ask the Haematology Secretary to ensure you see the Consultant at the next clinic so that you can discuss the diagnosis of osteoporosis?
Do you have a number for the Clinical Nurse Specialist that you could call? If you do perhaps that would be a good opportunity to start a conversation around the questions you have?
I do hope you are able to get some support and don’t forget we are here too,
Kind regards
Gemma
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Hi @helenfwallace Oh I expect you are so frustrated and a raft of emotions.
I get so worked up before appointments and then the final straw to get your next appointment when It clashes with another.
You were obviously concerned about your osteoporosis diagnosis and any implications for you.
I have a different blood cancer and I was diagnosed with osteoporosis about 8 yrs after my diagnosis and it has not altered my blood counts.
I have also been on several medications and pain killers for the osteoporosis over the years.
However that is me and I take responsibility for ensuring each specialist, and I have had a few over the years, are aware of everything medically going on for me and also as you say family history.
It’s like the appointment department they are just following instructions, there is often nothing personal or medical, we are just anonymous patients.
Sometimes it is worth asking for a cancellation or last minute appointment, although I know you are not as near your hospital as me.
@GemmaBloodCancerUK has given you a brilliant response.
The main thing is that you look after yourself and keep posting.
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Hi @GemmaBloodCancerUK, thank you so much for responding. The haematology appointments are booked by Outpatients Booking service. I could ring them tomorrow and ask who they have booked me with as a first step and if it is with my consultant and there arent any earlier appointments keep it and ask if I can have it face to face instead of videocall. My other appointment is for a Xray.
I dont think I have access to a Clinical Nurse.
Best wishes
Helen
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Hi @Erica, thank you for your answer.
Yes, it is a barrage of emotions -anger, distress, anxiety and the stress of knowing that I shall have to spend hours on the phone trying to sort things out. And yes, the Haematology appointments are made by Outpatient Bookings and the letters dont even say who you are seeing!
There is another concern about about the appointment being cancelled and that is to do with the Immunoglobulin test. Rheumatology tested them a couple of weeks ago. I know that the hospital lab will not re-run them within three months and also know haematology like the blood tests to be no more than 2 days old, but the immunoglobulin tests are going to be about six to eight weeks old by the time Haematology review them. I hope that doesnt sound too complicated! I haven’t had any phonecalls or letters from Rheumatology about these blood tests which suggests there hasnt been any dramatic changes.
I do try to keep those in charge of my medical care updated in changes in diagnosises and medication.
When undergoing treatment for osteoporosis did you have calcium supplements? I am not currently, because in the past few years my serum calcium was often borderline high (red flag missed for osteoporosis).
Best wishes
Helen
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Hi @helenfwallace yes, I have always had Calceous, but there are several different ones that are prescribed.
I also have scoliosis (curvature) of the spine. I have lost 5 in in height with multiple fractures and compressions of lower back vertebrae and lost 5in in height between 2011-2013, hence we moved to our flat.
I have had the A-Z of medications and infusion drips. Alendronic Acid to Zolendronic Acid!!!
Look after yourself and be persistent and pleasantly assertive.
Hi Erica and Gemma, after a frustrating morning on the telephone I managed to resolve the appointment conflict by rebooking my Xray. I have also emailed the Haematology secretaries and asked them to make a note that I wanted to discuss the osteoporosis diagnosis and its implications for me given my own MSK history and the FH of myeloma. I also said that Rheumatology had done some blood tests on the 5th May.
Thank you both for your suggestions. As time goes ever faster these days, the new Haematology appointment will arrive in no time at all!
Helen
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Great news @helenfwallace, you have been working hard today.
Yes, time does go by so much faster these days.
We must make the most of each and every day.
Hi @helenfwallace, thank you for updating us. I’m glad to hear you’ve been able to get your message across and rebook your X-Ray. Please don’t hesitate to let us know how you get on at your appointment.
Take care.
Best wishes,
Tanya.
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Todays post brought another change in appointment-the appointment has now been brought forward from the 27th to 6th June.
Helen
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Oh @helenfwallace you just never know what Mr/s Post person will bring, I usually dread receiving a medical envelope!!!
Thanks for letting us know and look after yourself.
The postman brought me three appointment letters-one ENT, one haematology, one confirming the new Xray appointment!
Helen
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