Blog

New diagnosis

Last week was my birthday and I had a terrific birthday weekend. Afternoon tea with Neil on the day itself followed by an amazing party on Saturday. I thoroughly enjoyed it and was so happy to see so many friends there. We also raised over £3000 for my fund from the raffle, auction and entrance tickets. Thanks to everybody who has participated or donated.

birthday cake
My birthday cake – gluten-free, dairy-free and sugar-free. Thanks to “Suprisingly Gluten-free” in Walton-on-the-Hill, Surrey

I really wanted my birthday to be a celebration and to focus on good things like flowers, cheesy music and cake. I wanted everybody to enjoy themselves and for the atmosphere to be light and fun, not heavy and sad. And for that reason, I have held off on sharing the news of my latest diagnosis until after my birthday celebrations had finished.

afternoon tea
Birthday afternoon tea (and red hair)!

We had news at my last consultation with the oncologist that the cancer has spread again and is now in my cerebral spinal fluid. This is quite a rare cancer called leptomeningeal carcinomatosis. I won’t go into full details here but you can find information on Google, including prognosis (but remember, statistics are just numbers). Basically it means that the cancer can travel up and down my spinal column and cross the blood brain barrier into my head. Tumours can form and press on nerves in the spinal column or when in the head can cause seizures, change of personality and slurred speech. There is no successful treatment but I am continuing on my hormonal medications as they may delay its progression. I am also still consulting with my integrative oncologist and will be following a scaled-down diet and programme of supplements and repurposed drugs.

It is not all doom and gloom. Yesterday I saw my oncologist again and it seems that my tumour markers are dropping which may be a sign that the hormonal medication is working to halt the spread of the cancer. But it is difficult to know. My lungs have not filled up with any more fluid and since the radiotherapy my legs have stabilised and although I still have constant nerve “fizzing” all down my calves and in my feet, I am still able to walk. We have also had a stairlift installed in the house so I can now get up and down stairs much more easily (and it is fun!)

The steroids worked to stop the nausea from the radiotherapy and I am able to eat again. I am mainly eating salads and soups but with the occasional treat now. I have lost a little too much weight so am adding more good fats like avocados and olives. I have stopped all the juicing, mainly because I cannot stomach it all anymore and I am always cold so am having soups instead.

I am experiencing some minor pressure headaches and visual disturbances – I see a constant flickering black light like a moth beating its wings out of the side of my right eye. So tomorrow, I will have an MRI scan of my head to see what is going on in there. It is likely that if they find anything they will want to do radiotherapy which I will have to carefully consider, weighing up the pros and cons. The radiotherapy can lead to cognitive impairment and drowsiness. I have been offered chemo but it would need to be put into a port in my head directly into my spinal column and there have been no reported long-term benefits. In fact, it can cause horrible side-effects and often has no benefit whatsoever. So I turned it down. But I am increasing my dosage of cannabis oils and maybe that will help.

And what about Charlie? I do want to mention it as I often find that when people write about these situations, they leave out the hardest stuff and I know that as a mother of a four-year-old son in this situation, Charlie is first and foremost on everybody’s mind. I have had a lot of time now to come to terms with the fact that there is a very good chance I will not see Charlie grow up. Now that is becoming more real and potentially getting closer. So we have had to start thinking carefully about what we tell him and have had a very useful meeting with a child psychologist at the hospital. It is important that we are honest with him and we are now using the word “cancer” around him and explaining it to him as best as we can. He often asks me in the morning how I am feeling and if I am all better and we are now telling him that I will not get “all better” and explaining why. We have started to tell him that mummy may not be around forever with the help of picture books for children in his situation. He seems to take it in, in his own way, and then just get on with things. It is not easy, obviously, but it is important that we are now honest with him as children pick up on things and he would know something is going on.

The difficult thing is now that I know what is going on, it is hard not to think about it all the time. This is why I never wanted a prognosis or would not allow anybody to scan my head until now. It is like a self-fulfilling prophecy. I am doing my best to stay relaxed – lots of meditation and acupuncture and saunas. But at the back of my mind is always the thought that at any time I could lose the use of my legs or I could have a seizure or start slurring my speech. It’s pretty scary but I really don’t want to let the fear and worry take over.

So I am taking each day as it comes and am extremely grateful for every day that I am well enough to get up and out and spend time with my family.  Neil, Charlie and I are hoping to get away for a family holiday to Centre Parcs in April. After that we will plan something else so that there is always something to look forward to. My mother is visiting now and my sister and niece arrive tomorrow, and it is absolutely lovely to see everybody.

In the meantime, I am having to reduce my screen time a bit due to the visual disturbances and there may come a time soon when I will have to stop completely. If you do contact me by e-mail or message and I do not reply, please do not take it personally. I will try to continue updating my blog when I can as I still have a lot to say! As Neil will tell you, I always like to have the last word.

People often ask if they can do anything to help and it is very difficult to think of things that can be done. But I have thought of something. Funny videos! I like to laugh and am sure it is good for me so if anybody has any funny YouTube videos that you think I would like, please add a link to the comments section below here.

 

Yours in healing and cake,

 

Xoxo

 

Just Jen