No words

Monday, April 20, 2020

Ok so it’s the blog I’ve not wanted to write. It’s not even that so much as it feels like I’ve been overloaded and it’s difficult to explain. I think I’ll be sticking to physical/ practical stuff here and follow up with a more emotional/thoughts post but let’s stop putting it off and explain.


Last time I blogged I was heading to Harefield again. I was seen in clinic, found a bed and sent to the ward on Tuesday. There were lots of ideas thrown around initially. My lung function had taken a big drop. I was X-rayed and told I’d be having a bronch the next day (a camera into lungs which can be used for various procedures). A CT scan was mentioned as was draining fluid, palliative teams and water tablets.

Although I was nil by mouth overnight my bronch was cancelled after my big boss dr looked at my X-ray. The fluid (ascities) on my tummy had gone up into my lungs and was lying between the lung and the lung wall. This makes it difficult to breathe and was causing my issues. I would have that drained in the afternoon instead. I was petrified. They would then test that fluid and CT scan the following day. Although I’d started on water tablets my consultant was dead against me continuing. With my other issues sooner or later it would cause kidney issues or high levels of potassium. I was being tested for this a lot and it wouldn’t be something realistically I could go home on and not have those constant checks. So that idea was scrapped.

I went down to get the fluid or pleural effusion drained off. It meant me facing a wall sitting up while my back was scanned. I hated having no one to hold me hand or include me in the conversation. I heard the word malignant and was stuck cold. I say shaking while having the procedure where local anaesthetic is injected then a needle or tube is inserted and fluid is drained with a syringe. I wasn’t painful but I just hated feeling so alone and vulnerable. I ended up imagining people I loved and what they would say to me which helped.

There was no pain after and breathing was a little easier. Sadly by the next days CT scan the fluid was pretty much returned and in my lower lungs too. On the Thursday I was told the Marsden wanted to phone me to discuss results. I was in a state, made myself really nauseous and headachy to find they didn’t ring. Or the next morning as promised. I can’t tell you how hard it is to wait for that kind of news, alone, without family, knowing whatever the outcome you have to tell them and with nothing to distract you. Finally the top consultant phoned me. She was the dr who treated me before and it was nice to know her and be certain of her knowledge. She spent so much time telling me what treatments were possibilities and what weren’t and why. For example immunotherapy is no good because you need less that 4 protein markers in the blood and I have all 4 which rules me out completely. Same with the drug herceptin, you are either positive or negative for that drug, I’m negative.
As bad as it is, it does help to know that and the why behind it because it immediately takes those off the table there’s no question on them anymore and you can focus on what is available.

What is available is limited. I also have incurable cancer, that means they will try to shrink, stabilise and control the tumours but they aren’t aiming to “cure” them. Now I took this 20 minute phonecall by myself and was stressed so this is the info as I understand it. The cancer is a relapse of my gastric cancer so wherever it is in my body the cells are gastric. I was high risk for it to come back and it’s not unusual for it to travel down to the ovary as it has here. Chemo is my only option right now, the first option we can try is the original chemo I was on previously. It’s moderately effective and we know it’s not caused the myriad of problems it could with anti rejection, liver issues etc. Which counts for a lot. 
There are also two other drugs that are unknowns with me. Both cause hair loss and platelets problems which are already problematic for me. The other option was do nothing, which is as valid option as any. 

My choice right now is to start the previous chemo. We will drain my tummy when chemo starts and the amount that comes back will be an indicate if treatment is working. After so many cycles I’ll be scanned again to see the effect and go from there. We can change drugs if needed.
As I understand, treatment with one set of chemo could work for years, or I could run through them all in a few months and then there’s no options left. There is no way of knowing till we do it.

For now I came home Friday Eve. It’s very difficult as the fluid in my lungs and stomach are extremely uncomfortable. It’s hard to breathe, move, I’m in a fair amount of pain but pain meds are changed so hoping they even it out. It reminds me of pre Transplant. Everything takes effort and I’m sleepy, finding it hard to concentrate.

Unfortunately Covid is another factor. Chemo will make me so extremely vulnerable that if I contract it I will die. My consultant has had experience of the virus in her patients and against both our instincts we are holding off starting treatment for 3 weeks.

They’ll be a lot to organise with the need for a picc line, fluid drain and certain medications to give me the best chance with chemo. 
I’m also on the local hospices books in case they can offer me any support during treatment.

Glad that’s written and out there! 

I appreciate all the love you’re sending. Apologies if I don’t reply, I’m just so worn out but doesn’t mean I don’t read every one xxxxx

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6 comments

  1. Bizarre as it is, as a complete stranger, I appreciate the effort you go to to write these updates. I'm deaf so can't hear video messages. I think of you often. I hope the new pain meds help. Keeping my fingers crossed for you. xx

    ReplyDelete
    Replies
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