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. 

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.

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.

Out and about to #StopHS2

 

Change of Direction

 

Friday 19 February 2021

So it seems my bloods are normal but what is worrying is that my CA125 has gone up again to 130 something. Given that at my worst state my CA125 were over 3,000 it does not sound too bad but it does indicate that the maintenance drug is not working. Having said that, I havn't had it for 6 weeks anyway because the side effects were too strong. So my cancer is on the move. How strange to think that stuff is happening in my body and I have no idea it is going on.

I had a CT scan planned for next week but by fluke I managed to get a cancellation and had one on Wednesday. That means perhaps there will be a plan of action early next week.

It is likely that they will put me on another chemo called Caelyx (liposomal adramycin ) every four weeks. It has different side effects. The main one being affecting my heart so I have to have a heart scan before starting treatment. The other is a skin rash in hot places on the body, under the arms, under the breasts, the groin ooooh lovely. They do give lotions and potions to help. My hair won't fall out so that is a plus as it is only just getting to a length where people don't automatically assume I'm a cancer patient!

This is a bit of a blow. Even the consultant was surprised the cancer has started shifting this early. Quite often people get 6 months or a year or more after the end of chemo before stuff starts to happen. Looking back on my 6 treatments I only had the full whack a couple or three times. The rest of the time was only one drug or a much redused dose. My body just could not cope with it. It reduced the cancer by a third but after that it did not do much.

I had got used to the idea of the maintenance drug every 3 weeks and that would be my pattern for a year. Now I have to get used to the idea that there will be a different pattern and I don't know how I will react to this new drug. Will it give me fatigue? Who knows. Off into the unknown once more. A sign of the times, getting used to some sort of plan and then having to erase it and come up with a different one ! ! !

Wall Poetry

 

 

Some poetry to brighten your day

Visit

https://thepearlsofpearlstreet.blog/2021/01/25/the-pearls-of-pearl-street-31/ 

for the full works

Exhibit Tendancies

 Tuesday 26 January 2021

A telephone consultation with Dr Quinton. My bloods are back to normal We Hey ! BUT I have a problem with high blood pressure. The thing is, it is a known side effect of the Avastin maintenance drug. The plan is to have a lowering of blood pressure pill given to me on Friday and hopefully that will help the protein in the wee as well (or have I misunderstood that bit?) My kidneys are complaining!

The bad news is that the cancer marker CA125 has started to go up rather than down. 6 weeks ago it was 11 then 3 weeks ago it was 17 and yesterday it was 33. It is still within the normal range but you have to ask why is it going in the wrong direction? I am going to have a CT scan on February 25^th to see what is going on.

A telephone consultation with the thrombosis clinic. They are happy with my bloods and are going to half the dose of apixaban. We talked about my bleeding gums and he is going to put a special mouthwash on the prescription. Must not do it at the same time as brushing teeth as it reacts badly to toothpaste! ! ! ! (green teeth anyone?) Another 6 months of a lower dose

Friday 29 January 2021 

My blood pressure was definitely too high this time and the protein in my urine was no longer a trace but up to level 3 and you can't go higher than that! So I spent some time waiting to see a doctor and then waiting for the doctor to get hold of the consultant and then after a long while I was told to go home. I was given the blood pressure medication which is Amlodipine and told to come back next week to get a 24 hour urine collection bottle so that they can test it in a more sophisticated manner and see how bad my kidneys are.

So what happens if my body cannot handle this drug anymore? Well there are other immunosupressant drugs I can try. So this is not the end of a line, something I was quite pleased about. When I first heard of a year of 3 weekly maintenance drug sessions I was appalled but now I am terrified at the thought if not having something that suppresses my cancer! How time changes everything.

I have now 3 weeks to possibly feel like 'normal' what ever that is. The oxygen in my blood is 100% How cool is that ? Added to that I have been given the first dose of the covid vaccine.