Friday, May 21, 2021

Good News


 

Wednesday 19 May 2021

Good News, my bloods are normal and my CA125 has come down from 400 to 134. R E S U L T ! That means the treatment is working. I have had an extra week of normality because of the Scottish trip. The Scottish trip was a blast. What a treat to actually sing with other people again. What a treat to meet with people I have not seen in over a year or more. To have a meal with a different person. What a treat to see different landscape, Scottish mountains and lakes and beautiful sky and puffy clouds. We were lucky with the weather with sunshine both days. Life affirming remembering that I am a singer and that is my profession and it's what I do. Remembering the quality of performing and being totally in the moment when I am singing.

On a slightly different tack, my headaches returned even after halving the ramipril dose. SO after 3 days without anything I got a prescription for valsartan at 40 mg. Six days on and so far no headaches and my blood pressure is coing down nicely. Crossed fingers and toes this one works for me.

Sunday, April 18, 2021

Climate Change Exhibition Stop! Act !


 

 Glijufrabui Waterfall Iceland Photo by Dave Pearl

 
 https://mailchi.mp/0562cec7657e/climate-change-exhibition-stop-act

Second Caelyx Treatment

 


Sunday 18 April

Day 3 after treatment and all is good. No headaches, no nausea, a little underpar energy wise, some rosy cheeks but basically feeling good and positive about the possibility that I can carry on with my life AND have cancer treatment.

In the consultation I had before my treatment I found out that my bloods were in good shape. I discovered that my CA125 had come down to 400 ! ! ! The last I heard was that it was 130 something. So between the 19th February and the end of March it had shot up to over 600. It was a period of realising that the Avastin was not working but my blood pressure was too high to have any new treatment so I had to postpone everything. What a relief to know that the chemotherapy is working. Now I can think about the future at least for 3 months of it anyway.

Last month I had a tricky time. The first week after treatment was not so bad, a little nauseous and a little fatigued but not too bad. Then I had my second covid injection that sent me to my bed with achey limbs and fluey symptoms. The next day I was fine. Then followed two weeks of headaches. I'd wake up at 5 or 6 with a vice like grip of headache that would eventually fade by about 12 noon after taking paracetemol and neurophen and being upright. I was convinced it was the covid injection, then I remembered how the first blood pressure pills had given me a headache DOH!

So I got myself a lower dose of ramipril (2.5 mg instead of 5mg) and as if by magic the headaches went away. These last two weeks coincided with my lowest point in the cycle in terms of my red and white blood counts and vulnerability to infection. My last week before the next treatment I was absolutely fine.

Onwards and upwards and the sun is out and the spring is here. I am planning my filming days for Odan y Wyneb / Under the Surface to happen at the beginning of June. I'm off to Scotland to do a live stream performance in the middle of May. Life is suddenly looking more interesting with some shape to it. Lockdown is slowly easing though I am aware I still have to be very careful.

Saturday, March 20, 2021

First Caelyx treatment (Liposomal doxorubicin)

 Saturday 20 March 2021

                                           Just a quick update, a day after my first treatment and everything is ok.  No nasty side effects yet and I don't have any nausea and the strange taste in my mouth has gone.  I have realised that I have spent a month in limbo with 2 cancelled treatments and then another postponement till finally yesterday it happened. It is like a bit cloud has been lifted and I can see into the future at least for 3 months anyway. I can get on with my life...... as much as I can in these strange lock down times. 

I asked the consultant how many different drugs there are to try on me and she said at least 5. That gave me hope that I will have at least 2 and a half years and possibly more if the time in between chemotherapies get longer. It is good to have a timescale even if it is not accurate. 

Here's to the Spring and new buddings everywhere. 

Wednesday, March 17, 2021

WAITING

 

Wednesday 17 March 2021

Waiting......the thing about waiting for results of a scan or a blood test or a 24 hour wee collection is that the mind runs riot. Ridiculous thoughts seem completely plausable like “oh my god my head is going to explode off my head because of high blood pressure, my kidneys have given up so no more treatment for me, I have three weeks left to live to sort my life out. What am I going to do with all my files in the attic, I need to start burning things now !!!! I can't leave all my shit for my son to sort out after I'm gone.

As soon as I get to see the consultant and she goes through everything with me it is like I have landed back on earth again. I come out of this limbo state where I cannot concentrate on anything or focus on anything and nothing seems to matter anyway because at this point in time I have no future. I have been in an in between world where reality is slipping and sliding away from me into a foggy mist. As the situation is explained and I am given a plan of action I calm down and can deal with it. At least I know what is going to happen..... at least what the consultant imagines will happen!

Top tips for the waiting period...... DISTRACTION ........ it is the only thing that will get you through. Watching endless TV series or films, reading books. When you wake up in the middle of the night, just read for an hour and then hopefully go back to sleep. Talk to very talkative people on the phone telling you about their complicated impossible lives, works a treat. Listen to music in headphones, or the radio, anything to stop that running commentary going on in your head that is happily making mountains out of molehills.

I am still waiting for the reuslt on my kidneys but I have been given the go ahead to have treatment on Friday. I am so relieved. I asked about the growing cancer on my liver and spleen and she showed me the CT scan. It is incredible, the technology available today. A series of photographs takes sliced of the body then you can scroll through and watch how different organs and the spine appear as if by magic. She showed me how the cancer makes these small little holes in my liver and then the liver grows around them. I have an enlarged liver because of this. Apparently if half my liver was gone it would just grow back and replace itself. Amazing! It was harder to see anything on the spleen but there was a shadow on the inside of my pelvis which I could barely see, very subtle gradations of grey. It takes years and years of looking at these shadowy forms in order to be able to interprate them.

It is amazing how accepting I have become of 'my cancer'. I would not have been able to 'see' it on screen 6 months ago without totally freaking out I am sure. Now I realise it is part of me and not going away.

Thank you NHS, thank you scientists, thank you inventors of technology and computer programmes, thank you for all the PHD's and scientific research that has brought about this knowledge and expertise. Thank you Thank you Thank you. I feel blessed to be alive in these times.

Wednesday, March 3, 2021

The Penny Drops

 

 

https://vimeo.com/519077428 

Wednesday 3 March 2021

                                            I have had information about my CT scan. My complicated mass has not changed. The tumors around my ovaries, my pelvis my fallopian tubes have not grown nor shrunk. Well that is a good thing ! However the cancer in my liver and spleen have grown 'considerably'. So in the heat of the moment I forgot to ask for any more details, like by how much are we talking?  centimeters or what?   Is this normal for the secondary cancers to grow and not the primary? We talked about how the maintenance drug was not doing it's job in containing it.

I now know that with Caelex it takes about an hour and a half to go through the first time, then the next month an hour and if all is well just half an hour after another month. Then I will have another scan to see if it is doing anything. If it is working then I can have another 3 treatments.

As usual it takes a while for me to absorb new information and then calm down and accept it. I allways go through the phase of realising OH MY GOD I'M GOING TO DIE. Then into a spiral of, well how many different drugs can they try out on me? If I need a new one every 8 months how long does that give me ? All crazy questions because nobody can answer them. So then it is the realisation that this is my life now. A cycle of of having blood tests, scans, treatments, then if I'm lucky a period of time where I don't have to put destructive substances into my body. I have had roughly 3 months free of drugs. I feel really well and strong. I'm in a good place ready for my next blast of chemo. Bring it on ! 

 Thank goodness for the NHS. Thank you for all that you are doing for me. An amazing service and organisation full of caring and generous people.

Good News

  Wednesday 19 May 2021 Good News, my bloods are normal and my CA125 has come down f...