The new normal

It can knock you sideways when what was your normal is changed. I have had many years to come to terms with the sudden and unexpected changes and put my full trust in my clinical team.

Sorry I wouldn't trust them as far as I could throw them.

So far I have never had the same person twice.

The normal I was talking about was when I went to the Hospital , got weighed had my blood pressure checked.

Got bloods taken, then had a physical exam by a Doctor.

Now they just seem to be dealing with emergencies  and the rest of us can wait till we are one.

Yes I did understand that to be what you were talking about…… but sorry that you have lost the trust in your clinical team…… I also did not have a specific consultant as it was a ‘team’ Heamatology Department so I never knew who I was going to see….. but for me they were all great.

I have a different type of incurable Low Grade NHL first diagnosed back in 1999…… after 19 years I was eventually discharged by my clinical team and told to get on with life and if I needed them to call in…… 4 years on I have not made that call.

I am happy to not having all the hospital appointments and treatments….. hit my community name for my long story.

I do hope that you can navigate this as best as you can.

Mike I have posted here before many times although the site seems to have lost my profile.

I am having some specific issues with my skin which started with the Covid jabs.

Which looks very like Thrombocytopenia.

This can be related to Lymphoma.

So I asked for another blood test last August , my platelets came back at 210 which is within the normal parameters 150-450

My GP referred me to see a Dermatologist.

I never went because it seemed to be clearing up and I was annoyed because he was asking me to go to the hospital I left. due to the consultant lying to me about treatment.

But it came back every time I had a booster and also at a few other times possibly stress related.

So I asked him to make a new appointment at my new hospital.

He was ticked off with me for not going and said they would have done a biopsy and found out what it was

The letter said it could be 12 weeks or longer.

6 months later. still no appointment.

However I started getting scabs on my face and nose that did not seem to heal.

So I took some photos and he said you better come in let me look.

He was worried that it might be skin cancer.

So I went for a biopsy at the wrong hospital.

I told them about my rash and showed them photos and the Doctor said wear loose fitting cloths..

 They took some photos of my legs arms and torso but no biopsy

My biopsy on my nose came back as Basal cell carcinoma.

Now I have been referred  to my hospital for a consultation on treatment , think they figured  that out themselves.

My appointment is on the 23rd and all they have to look at is a very small scar.

So my guess is the biopsy may have took all the cancer or there was a mix up at the lab.

I have now recently go rectal bleeding which is something you are told to watch out for with Thrombocytopenia.

I know if it persists for longer than 3 weeks I need to contact my GP.

Just seems that if it's not killing you don't worry about it.

Cheers

Steve

Hi Steve, I just clicked on your Community name Doh and I could see your profile, give it a go and if it’s not there so get back to me and I will send a note to the Community Admin Team to check it out.

Skin problems along-side a Lymphoma diagnosis and also following Lymphoma treatments are actually not that unusual.

The appointment will be able to check that all the Basal cell carcinoma is actually gone and the Dermatologist will most likely give your skin a good check over.

Having lived with my skin Lymphoma I have been seeing my Dermatologists for coming up to 23 years but so far I have kept clear of skin cancer but this may not be the case in the future.

We do have our dedicated group Skin cancer where you can talk with others who have walked this specific road.

I attend 7 different medical clinics and there are distinct difference as to the quality of the communications but the one lesion I learned early in was I had to be my own advocate and kept the wheels of the NHS honest working to my advantage. 

I know what you mean about appointments. Mine started being telephone appointments when covid started, but they also wanted me to go in for bloods. So I was supposed to go for bloods then come home and wait for the telephone to ring. After doing that a couple of times I told them I wanted to stay for a face to face appointment instead and that was agreed. However, I'm not so much worried about having a physical examination as last time I relapsed nothing could be felt physically anyway. 

Well I got my follow up letter from my Teleclinic.

She seems to have got crossed wires about the new normal.

I meant the lack of doing anything and she thought I was talking about my rash.

But I watched a video on Lymphoma Action and some Professor said active monitoring is DIY now, so at least I know I am getting the same treatment as everyone else.