Back from a long break.

Hi 

That's so nice of you to say that, thank you . When will you get your results?

Tvman xx

Hi, I hope your brain scan was clear??? Pet

tvman and Pet1968 apparently it's taking 4-6 weeks to get the formal report at Jimmy's, but the Consultant will view the images. I've got a phone appointment on the 20th Oct for the results.

I'm having a CT scan of chest, abdomen and pelvis on Wed and have a face to face appointment with the Consultant on 22nd Oct for those results. 

The brain tumour and bone tumour in the frontal bone are both inoperable because of location/size but responded to Gamma Knife Surgery in 2018. The last scan in June showed some growth in the brain tumour but that could have been a response to a change of chemo. The last CT scans in June were mixed but overall stable.

I'm lucky because my Consultant is guided firstly by how I'm feeling, then by the scan results and then the cancer markers, so I'm doing everything I can to be in good shape!

tvman what are the injections (if it's ok to ask?) Cant be easy especially when they're more painful on 1 side 

Pet1968 had a look at your profile, you've been on such a rollercoaster, the initial diagnosis must have been a massive shock. I hope the immunotherapy is keeping you stable and the side effects are manageable.

xx

Thanks, we will see , going to get CT scan today, head to pelvis, as lymph nodes are swollen again ...then wait until Tuesday to get results..when they found my brain tumor i had a call the same day, so i'm glad if the phone is not ringing.

Pet

Hi 

Sounds like you have a great consultant. Good luck tomorrow, today really by the time I finish this. You have a lot going on and I'm always rooting for you, I think you know that. 

I haven't had a good day, my wife forgot to give me ALL my medication this morning. I forgot a few times in the past so she is in charge. Alexa reminds her twice a day, 8 and 8. This morning I didn't wake up when her alarm went off, I think because of yesterday's stress. I remember hearing the message. Of course I never remembered later and the worst thing was I didn't get my morphine which caused problems. It was only just before 8 at night when she went to put my tablets out that she noticed and of course that explained the whole day as I was so I'll that I couldn't get out of bed. I usually have a cup of tea ready for her when she arrives home from her school about 2.30. Ironically I apologised to her!   

Of course you can ask about my injection Tinalay. I have MDS, a bone marrow cancer and the particular one I have is Refractory Anaemia where the bone marrow doesn't produce enough good red cells. Most are good, some are malformed or dead so I am anaemic all the time and get tired easily. The injection is a drug called Erythropoietin, EPO for short, and it induces my bone marrow to produce more red cells. To put it simply, I wouldn't be alive today if I didn't take it. I explain a little bit more in my profile.

I've been advised to give my right leg a rest for a while. I read the little pamphlet that comes with it and although the hospital told me to inject it into my legs, the leaflet says I can inject it into my arms also so my wife is going to do my arms. The leaflet also says that more than one in ten experience pain at point of injection, a pity the nurse didn't tell me that.

Well, it's still today Tinalay. My wife, my son and I all have to get the flu injection tomorrow. Usually just me but because they live with me, they have to get theirs as well. Any more mornings like this morning, it'll just be me and my son living here lol 

Take care and stay safe Tinalay.

Tvman xx

Hi Pet1968

Just wondering, do you still have the mammoth drive to your hospital or have I got that wrong?

Tvman

Hi Tinaley,

Sorry that I haven't been here to welcome you earlier but it is lovely to see you posting again.  I hope that your consultant comes up with a way for you to move forward.

love and hugs,

Gragon x

tvman, Hi ! No it's only for special things like radiation or so, treatment , ct scan and so i can get here in town , takes a two minute drive

I hope your pain is better today??? My sister got a wrist watch who tells her when to take her meds..she got epilepsy, it works for her.

Hi Pet

I've a daughter who has epilepsy also and she too has a watch that reminds her to take her medication.

Thing is, when I was taking my meds myself I sometimes heard the Alexa alarm but if I was dozing (I kid you not but I doze more than 40 times a day!). Therefore I would forget or think I had taken them. Another problem was that I sometimes took the wrong day or worse still took the evening ones instead of the morning one. They come in a blister pack but my morphine comes separately as it is a controlled drug. I used to forget to take that sometimes. My wife therefore has taken over dispensing duties and simply forgot. 

Leg pain is ok today thanks, the back pain comes on standing. It's not going anywhere I'm afraid. 

Tvman x

Hi Gragon thank you, it's good to be back. Nothing to apologise for, everyone has so much on their plates and you've always been there for me.

xx