[MF1Participant]

My husband was diagnosed with MM in October 2012. The diagnosis came from the investigation into his excrutiating hip pain. He started his CTD in November and this week was about to complete his 5th cycle. 3 days ago he suffered from a seisure and was taken to A&E. After 15 hours of waiting in A&E for a bed, after 3 scans and explaining his story to yet another Doctor or nurse he ended up in a Medical Assessment Ward where (despite my constant warnings about his low immunity) he was placed in the middle of the corridor of the MAU and packed with Morphene. He stayed there for another 5 hours… I presume that several Doctors have seen his Xray… but all commented – there are no fractures so they had no idea why he is complaining of so much pain and could not move his hip or stand up.

To cut the long story short – he was discharged to go home. I literally had to carry him in. Where he has been sitting on the recliner armchair for the last 2 days unable to move or stand up. I have today obtained copies of his X-rays from the Hospital and even to my untrained eye (and GP now agreed with me) – my husband's leg bone perforated his myeloma damaged hip.
(His Consultant is on holiday). GP is arranging a visit to Private Consultant Orthopaedic Surgeon tomorrow.

I really do not know what will happen next…
1) Is he going to continue with CTD (he is taking it still)?
2) Can he have a hip operation whilst on CTD (he has a month of CTD to go)?
3) What is going to happen to the stem cell transplant op he was supposed to have after the 6th cycle of CTD?

If anybody has been in a situation remotely similar – please could you let me know… It is horrendous to have no information and with the Consultant being back on Monday, I have nowhere to get it but for YOU.
Please help.

[tomParticipant]

Hi Marina
Sorry you had to join after your Husband diagnosis with MM you have come to the correct place.

I am sorry you two have had a bit of a rough time with it of late and sorry I cant help you this time but am sure some one will pop along and give you the Good advice you need.

Tom Onwards and upwards x

[MF1Participant]

Thank you, Tom 🙂

[eveParticipant]

Hi Marina

Sorry you are in this situation ,but it will help you with future dealings if you end up in A&E again.

I can tell you during the fourth cycle of CDT my husband was admitted to ITU and was in hospital for 23 days they stopped the chemo ,said that came secondary to Pnuemonia ,all together he was 6weeks no treatment ,then went back on chemo,so try not to worry about treatment.
I would complain about you treatment ,I can assure you,if you ever have the occasion to go in A&E again,they will remember you and you will get better treatment.Eve

[meganjaneParticipant]

Hello Marina,

I am so sorry you and your husband had such a bad time in A&E and the MAU. My husband Phil was diagnosed with MM in May 2012. Phil started treatment at the end of May and he had six cycles of dex-dox-Velcade. His second or third cycle was delayed as the medical team were very concerned about the damage the MM had done to both of his legs. He was admitted for surgery and he had two operations, one on each leg, to nail his femurs to prevent them from shattering. We were told that his chemo would start again once his legs had healed and the risk of infection had passed and this was what happened. Phil also missed one dose of the Velcade on another cycle when he was admitted to hospital with pneumonia. Phil had a similar problem as your husband, despite being potentially neutropenic he was put in a shared ward until some one higher up the hierarchy arrived and hit the roof and had him moved to a private room. At that time I didn't know what neutropenic was but as Eve has said it is a learning curve and we get better at knowing what we need to demand and say at the hospital.

The operation that your husband needs may delay the treatment and the transplant but the hip needs to be fixed as a priority. Phil had his stem cell transplant in December/January and he is now at home recovering well. Your consultant will be able to answer all your questions but from our experience things never run smoothly but Phil got there in the end with some delays along the way.

Good luck, I hope your husband is on the mend soon and that the surgeon will be able to give you more details of the operation tomorrow.

Megan

[MF1Participant]

Thank you. 🙂

[MF1Participant]

Thank you Megan. I had actually demanded my husband being placed in seclusion. I presume I was not vocal enough… At some point I was told that they will do the bloods and then check the amount of white cells on which they will form their decision to put him in a single room – this is (looking back) rubbish.

I am grateful to the chap who did me the Xrays disclosure. I am going to write to the Hospital with my thanks to him personally/to his management. Without him we would not have known how bad my hubby' hip really was… and to GP for seeing me…

[Author]

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