[susieParticipant]

I’m rather down at the moment. The hospital I am getting my treatment at has changed so much since I started there 5 yrs ago.

I’m currently on IRD, 9TH cycle on 2nd relapse. I see a different Dr each appointment, they do not appear interested in any side effects I have. There is no emotional support at all and as far as having a CNS, yes there are 3 but they never speak to you. Then to crown it all, last week I went for my Zometa on a late appt and the chemo nurses wouldn’t give it as it would mean they would go off duty late or as they put it “we close at 5”

I don’t know if I am being unreasonable and expecting too much but reading the posts on here other hospitals appear totally different. I do appreciate how busy these clinics are.

There I’ve had my rant for which I apologise. I hope you all are doing well.

Best wishes

susie

[suew1960Participant]

Hi Susie have just joined the forum having lurked here for about a year and got a lot of good advice from the posts. I’m sorry to read that you feel so down atm and that you have found your hospital so unsupportive now. It is a long road that we myeloma patients are on and at times you can feel very isolated. I don’t know about you but I have never met another myeloma patient even though the last year has been a never ending round of hospital appointments and clinics. Are you at a very large hospital? Why did they give you an appointment for Zometa and then turn you away? Sounds very thoughtless of them. Its It’s difficult too I think if you keep seeing different doctors and can’t build a relationship over time. Sorry that I can’t offer much practical help but do sympathise! Do they have Macmillan nurses at your hospital. They have a great reputation for getting in front of consultants and getting answers apparently! Good luck with your on going treatment. Keep on keeping on Sue

[davidainsdaleParticipant]

Hi Susie

Sorry to hear that you are feeling down just now, the whole experience can be quite traumatic especially if you are not getting support from the professionals.

So just wondering if you had considered going to one of support group meetings. I know that they are not everyone’s cup of tea, but I run the West Lancs and Merseyside myeloma support group. I can honestly say that those who come along to our meetings do find it valuable to meet others similarly affected and to swap stories in an informal atmosphere as well as trying to have some fun. Like you, it was 10 months after being diagnosed before I spoke to anyone with myeloma, so it was quite a lonely journey to start with.

Our group meets once a month but members don’t have to go to every meeting. If there aren’t any myeloma specific groups near you then there will probably be some haematology groups run by Mcmillan or one of the other blood cancer charities. Myeloma UK have a full list on their website.
Hope this helps.

David

[susieParticipant]

Thanks for your replies.

Sue HI. The hospital I go to is not big. Their main cancer unit is at the main trust hospital just under 20 miles away. I have heard good things about that unit,so I don’t really understand why I’m feeling the way I do. As said perhaps I expect too much. Too many patients,not enough staff. They don’t have Macmillan nurses but I think they do at the main trust hospital.

Hi David

I did go to a support group started at the main hospital, but I’m afraid I found them rather clicky. There was no one from my hospital so they all knew each other. I’m afraid i felt very out of it. I was diagnosed some 5 yrs ago and I’ve not had a chanceto just chat to anothe myeloma patient.

Gosh enough of my moaning. I do sound a grump don’t I.

Best wishes to you both

susie

[davidainsdaleParticipant]

Hi Susie

Sorry to hear that your experience at the local support group was not the best. I recognise only too well the value of being able to talk to other similarly affected.

Myeloma UK did at one time have a buddy scheme, and I think that this is still the case, which puts patients in touch with each other. It is certainly worth a call to the Helpline to see if anything can be arranged.

I thought it was only us chaps who qualified for the grumpy club!

Hope this helps
David

[Author]

Posts