MGUS and fatigue

Hi @Trish I just cannot imagine your complete mixture of thoughts and emotions you have, one thing after another tries to beat you down, just rant and rant and rant on here, please.
Sending you so many loving vibes and be ever so kind to yourself.

1 Like

Oh @Trish ,
What a rollercoaster! I’m so very sorry you have been put through all that. It sounds like you have good support, but here for you.
Sending hugs to you and your family.
Alex

2 Likes

Oh bless you @Trish what a lot to take in.

That’s quite normal to see a dentist before Zometa to make sure you don’t need any dental work doing before hand.

That’s encouraging that treatment is going to be in the next week i understand how you’re feeling about not being heard this last 3+ years though.

I can understand you being scared it’s the fear of the unknown but you’re on the start line to getting better you got a wedding to go too.

Thinking of you and the family

2 Likes

Hi

Thank you for your continued support I really do appreciate it. Yes a week tomorrow I start my treatment at 9am. I am also going to request a change of consultant because I will be putting in a request to investigate the duty of proper care I have not had during his responsibility for me, and I do not wish to be treated by him any longer.
I know if I didn’t do my job properly I would expect some kind of investigation into why not!
Yes I have a wedding to go to and I’m just hoping the treatment want affect me too much as there’s a lot of work to be done. Nice work though.

Thank you once again for taking the time to message x

3 Likes

Hi @Trish ,
How are you doing? A silly question maybe as I can imagine you are gearing up for the start of treatment? No need to reply if you don’t feel able, but thinking of you and sending a top up of hugs.
:people_hugging::people_hugging::people_hugging::people_hugging::people_hugging:

2 Likes

Hugs from me too @Trish and @AllyBally
Be kind to yourselves

1 Like

Hi @Trish, I hope you are doing okay today?
I appreciate you have been through an awful lot lately and this must be really stressful. I would also imagine you are just keen to get treatment started now.

Accessing a second opinion or transferring care is something that you have the right to request. In case it is helpful this webpage talks through the process- Getting a second opinion | Cancer information | Cancer Research UK.

I can see you have been surrounded by so much wonderful support here and i just wanted to add to that in that should you ever need to talk things through our helpline is very much here for you- Blood cancer information and support by phone and email | Blood Cancer UK.

Sending you lots of strength for Monday,
Take Care, Lauran

3 Likes

Hi Ally @Erica

Thank you all so much for checking up on me it really means such a lot. I am feeling a lot better in myself thanks and my dreadful nausea has gone. I have even gone outside and cleared my greenhouse ready for the onset of Autumn. It’s a beautiful day.

I went to the hospital yesterday for blood tests, pre treatment checks I understand so all ok to start on Monday. Whilst I was waiting in the waiting room to see my specialist nurse my consultant walked passed me 3 times! I honestly felt so angry towards him because he never acknowledges anyone! I just looked away from him! Gritting my teeth.

I then brought up with my nurse that I needed to change consultants. I have been advised legally I must do this. She didn’t know how I went about it but I am seeing my GP on Tuesday to discuss this. I rang on Thursday and made the appointment so she already knows what’s to be discussed.

I will NOT be treated like that from anyone least of all by him! He shows no empathy, compassion nor respect for any of his patients and I cannot believe I am the only one to put in a complaint. But blatant disregard of proper care must be properly investigated!

I am feeling very strong and in the right place now and if I don’t stand up for what I believe is unacceptable behaviour how many people will lose their lives because of him. If I hadn’t rung him when I did to tell him he needed to do something because my symptoms were not going away then I would still be none the wiser because he had fobbed me off just a few weeks earlier during my 3 monthly telephone consultation! Disgraceful.

Oh my goodness apologies for the rant!

I am so sorry but I just want to help other people who feel that they have no voice where consultants are concerned. They sign a contract, an oath I believe, just like I did when I became a police officer to serve and care for their patients to the best if their ability etc if they don’t then they should be held accountable! Rant over.

I wish you all well in your journeys too and hope that all your good days out way the not so good ones.

I am feeling really positive today knowing I have my treatment just 2 days away. I feel I have a little control back in my life even though the treatment sounds scary I’m a tough bird xxx

3 Likes

Hi @Trish ,
Go girl!! Rant away…you’re entitled to feel angry, I would too. I totally understand where you are coming from. I am also under a consultant who has zero empathy and compassion and even laughed at me for some of the questions I had. I felt terrible and was really angry and tearful afterwards. However, I was rescued by the most wonderful research nurse afterwards, who was the complete opposite of the consultant and answered a lot of my questions.
Really glad you are feeling more positive and enjoying the sunshine. I’m pottering in my garden too today.
Hugs Alex

3 Likes

I just looked in to message to see how you are @Trish and your being well looked after

I tried to have a discussion with a consultant and my brother joined me a few months ago which didn’t go well. We asked him to refer me to another hospital and my old consultant. Unfortunately there is no space for me so I was passed to another consultant who I had problems with and I now have one of the remaining original consultants as all the others including my consultant left leaving the unit in a right upheaval
So far so good.

I have been made to feel like a pest for asking one of those consultants to wear a mask who reluctantly wore one and followed up in a letter about the needless wearing of masks as WHO guidelines say masks don’t need to be worn

Have a look at the NHS constitution section 4 is about being patient led

https://www.gov.uk/government/publications/the-nhs-constitution-for-england/the-nhs-constitution-for-england

4. The patient will be at the heart of everything the NHS does

It should support individuals to promote and manage their own health. NHS services must reflect, and should be coordinated around and tailored to, the needs and preferences of patients, their families and their carers. As part of this, the NHS will ensure that in line with the Armed Forces Covenant, those in the armed forces, reservists, their families and veterans are not disadvantaged in accessing health services in the area they reside. Patients, with their families and carers, where appropriate, will be involved in and consulted on all decisions about their care and treatment. The NHS will actively encourage feedback from the public, patients and staff, welcome it and use it to improve its services.

The four pillars of medical ethics are

3 Likes

Yes, @Trish I am also a ‘tough old bird’, but words and attitude really cut me to the quick.
Always feel free to have a good old rant amongst your friends on here
I find having a little control back or a plan really helps me to feel more positive.
I think hoping ‘that all our good days out way the not so good ones’ is’ is a very good hope for us all, thank you, wise words.
I will be thinking about you when your treatment starts fingers and toes crossed for you and be ever so kind to yourself xxx

2 Likes

Oh @AllyBally what a horrible experience you had but your research nurse really does sound wonderful, what a difference.
I hope you enjoyed your pottering in the garden.
Look after yourself xxxxx

2 Likes

Hi @2DB

Thank you so much for taking the time and trouble to respond to my rant. I am sorry you too had to go through all the challenges too.
Unfortunately I cannot follow the link you gave me as I live in Wales who have their own rules and regulations to follow to people who live in England, but thank you for sending it to me.

I hope my GP on Tuesday will give me more clarity and help me swap consultants. I cannot stay with him for legal reasons now anyway without the moral reason too. To be honest all the specialist nurses do an amazing job and hopefully there won’t be a need to see him again. Well I refuse to.

I really hope you will continue to do well with your new team behind you and wish you all the very best too x

2 Likes

Hi @Trish,
Changing consultants may be as easy as having a telephone conversation with one of the medical secretaries. They can be difficult to get hold of, but in my experience are always willing to help.

Best wishes

Helen

1 Like

Hi Helen

Thank you so much for your message. I saw my GP on Tuesday, who was absolutely gobsmacked at the way I have been treated and agreed with the lack of duty of care by the consultant, she has written to another consultant so hopefully that will be the end of things with the other so called consultant.

1 Like

Hi @Trish,

I am really glad that you have a supportive GP and I hope things get sorted for you. I am going for a second opinion to another hospital with my hydronephrosis. I hope your treatment goes ok.

Best wishes
Helen

1 Like

Hi Helen

Thank you. Takes some getting used to I’ll give it that!

Yes you must do that. So many people just accept it’s the way it is, well it’s not. We have one life that we put all our trust in these so called professionals and they treat us like this. Well not any more. Good luck Helen let me know how you get on xxx

1 Like

Hi @Trish,
think I got an appointment for the 2nd opinion, in that I got letters from the hospital one cancelling an appointment in April 24 and another giving an appointment at the “one stop clinic” on the 24th if this month. See what else arrives in the post…

Best wishes
Helen

2 Likes

Hi @helenfwallace between my husband and I hardly a a few days goes by without an NHS letter dropping on to the mat, it’s a never-ending saga.
As for our medical files, well, I think we will have to move to a bigger flat to house them all.!!!

1 Like

Ah Helen that sounds more positive for you. Fingers crossed things go according to plan. Remember to voice your concerns!

I’m seeing my new consultant next week too though the nurse is trying to say I don’t need it, well news for her I shall be seeing him! No more putting up with being fobbed off anymore I can tell you! I’m compiling a long list of questions that I need answers to seeing as the other consultant can’t be bothered! :face_with_symbols_over_mouth:x

1 Like