Anyone affected by delayed treatment

Hi Janet 

it’s scandalous the way you’ve been treated. I see the lymphoedema nurse regularly - every six months now.  I had a telephone consultation last week and that was fine. She said she would come to me if I needed to see her in person. I don’t know what I would do without her. 

Is it the hospital service that hasn’t been in touch? I use the community lymphoedema service she was referred there by my GP. Is it worth exploring community options with your GP? 

xx

Hi Daloni I had a phone consultation today with my "caring" onco.I was crying over the phone because my arm is getting bad.i have asked the about the clinic and the cheeky c.w told me that the lymphoedema clinic might not open again at all.Thats when my BP went up and I told her that would be nice if they would inform the patients.She said she will send a referral letternto GP to go to UCHL for the treatment.So probably have to wait few months until my arms fall of.

This hospital its a disgrace I cant name it but its in NW London.They dont do anything for me except prescribing chemo.

Hi Janet 

well it’s progress of a sort. I hope you won’t have to wait too long for the service at UCLH to see you 

xx

Dear ,

 I'm with Daloni, the lack of care is outrageous. Is there a lymphoedema clinic in a hospital near you that you can show up and say the one you are in will not reopen? Can you switch hospitals ? Make noise so they will take care of you. Is there Macmillan support to be had?

I know its hard to fight when you are sick, but you need help. Anyone in the family that can do the "leg work"? pun was not intended but there is is.

We are with you in spirit and maybe others in the forum and add suggestions.

Hugs,

Millie

Hi ,

it is not good enough that you are not getting the treatment you need.  At the very least I would get in first with my GP as we are all aware how long a referral letter can take.  You could contact PALS to complain about this service being removed.  The need has not gone away and unlike dentistry you can undergo it whilst wearing a face mask.  I know that staff have been moved according to the new priorities but surely not all the lymphedema nurses have been allocated elsewhere.  I have had an oedema in my abdomen but not on my limbs so I cannot offer much wisdom regarding treatment but perhaps someone on the site might be able to suggest something that you have not tried.

Sending love and hugs,

Gragon  xx

Thank you everybody for kind words and support.I am going back to work on Monday I am going to ask my boss if they have any physiotherapist.I work for a big care company I know they all sort of people.Luckily I have only amended duties so I will sit front of the computer just to help out with paperwork and will phone my GP too.

Janet

Hi,

This is disgusting,could you not contact PALS to complain,as surely this should not be.

Everyone deserves treatment & you should not have to wait.

I do hope things get sorted for you very soon.

Georgette xx

Hi

Sorry to hear that you are having so much trouble with your treatment but if I can bring a sliver of good news, there has been a lot of discussion on the news this morning and it rests on hope that treatment for cancer is to be increased because the Covid19 battle has taken so many staff to help. Now the talk is about asking doctors and nurses to do extra shifts, evening and weekend work as well as a chemo bus to bring treatment to the patient.

Whatever happens Janet, I hope you get the treatment you need and deserve.

Tvman xx

Hello Georgette yep thats my opinion too.Whilst waiting my mobility is getting worse.My team is really useless this is going on since January and the only thing they can say I am sorry I cant help you.I dont trust and dont get any support from my onco team my nurse is lazy and I hate the hospital i have been treated.I am so jealous of people they have a caring doctor and they always come up with new options I was told I just can have IV chemo,I wasnt told for how long or what.

I spoke with one chemo nurse she told me one of my doctors I have complained about that i am not the only one and that people refusing to see her.So why they are doing this job?I wouldnt wish to my enemy to go to this hospital for cancer treatment 

Thank you Tvman I just feel all other patients have been dumped.Not only cancer ones.

I am hoping to get be transferred to UCLH where I should also  be referred for the lymphoedema treatment.

If I would have money I would go private but I dont unfortunately.