[PerkymiteParticipant]

Hi all, I went to my assessment today. And I am just a little peed off. My Revlimid treatment has been put back again.

I was supposed to have some radio treatment on my ribs during the month Aug/Sep. I wrongly assumed, as I had heard nothing, they had cancelled it. There was talk of a discussion between haematology and radiotherapy about it.

I got the usual bull sh+t about the Radio dept. being very busy etc… etc… and that I had not been forgotten etc…etc… . And they are going to fit me in Monday or Tuesday next week! In those few moment I just started to lose faith in the Beacon Centre. As a Sgt Major in the Army and a senior manger in business I am used to waffle when mistakes are made and the Consultant was less than convining.

The upshot is that my next course of treatment has been put back for another month. In the meantime my PPs keep piling in. My estimate is that they will be around 33 by the time I start Revlimid which was where I came in in July 2009.

There is a Care and Quality commission meeting at Musgrove Hospital on the 21st Sep and I think I will be attending!

A really fed-up not so perky Perkymite

Kindest regards – vasbyte >:-( :'-(

David

[mhnevillParticipant]

Hi David

You really must be peed off! Not without good reason. It is so unusual for you to be anything else but very positive.

I do hope they get you sorted out soon! I'm glad you are going to the Quality and Care meeting. We need to make sure things improve. It's why I have joined our GPs' Forum.

Hope the treatment goes well and does the trick.

Love.

Mavis x

[PerkymiteParticipant]

Yes, I have looked at joining our local forum. Undecided at moment because I still have three major things to do before I pop my clogs and I do not want to interfere with those. We shall see.

Kindest regards – vasbyte

David

Felt a lot better after getting it off my chest. I am going to attend the Care and Quality commission meeting and have started putting my arguments on paper, so they are not forgotten.

[PerkymiteParticipant]

As if to add timber to my fire I have received this morning, 14th Sep, a letter dated 10th Sep about My Assessment on 16th August! This letter set outs in detail all the treatment I should have had in the past month. :-S

Kindest regards – vasbyte indeed

David

[eveParticipant]

Sgt Major

The look you gave them should have been enough! You know when people are out of order,just surprised you did not tell them,it's not nice when people basically tell you porkies,would have accepted it more,if they had been honest and admit they forgot about you,but would rectify it as soon as possible!! Some one forgot to make the appointment for radiotherapy,.:-P

[sanParticipant]

Dear David, so sorry to hear this 🙁 you are right to put pen to paper , lets hope that this resolves soon and that you start on the revlimid asap, sending you good wishes 🙂 San x

[VickiParticipant]

Hi David

Sorry to hear you are being messed about! That's not good for the confidence of your health…..however you are a perky, cheery chappie, so positive so dish up a dose of that for yourself, as hard as that it

Positive thoughts are with you

Vicki and Colin xx

[PerkymiteParticipant]

Ahhh, now that is better – back on track.

My letter to all involved and my Doctor brought immediate responses and apologies from those concerned in the c**k up.

My next assessment has been brought forward and I should start 3rd line treatment then.(I use the word "should" as opposed to "will" when I have it confirmed at my next assessment). I have now had my Chest X-ray. We have agreed to hold the radiotherapy until the X-Ray results are discussed at the assessment, this is mainly because I now have no left side chest pain at present.

They have also accepted that the patients do not like the Merry Go Round of consultants, where your assessment is taken by which ever consultant picks up your file. I have now been taken off that and will see just one Consultant in future. Frankly none of this would have happened if this had been in place from the start.

Thanks for the support Guys & and Galls (or is a Gall now a Guy 😐 )

Kindest regards – vasbyte

David

[eveParticipant]

David the sgt major.

I am standing to attention,just reading it. Lol,it does show what you can achieve when you make a formal complaint just sad that you have to do it,but well done,I am sure you will be a lot happy seeing one consultant,I know we are,,I feel that even if I do not agree with him,I do feel he listens to our concerns. Eve

[tomParticipant]

Well done you David, am pleased your back on track.
It's good to have the same consultant I have had same one since he told me I had MM except when I was moved to Hull for SCT then it was a who grabs a file next

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