Dates sorted

Having made the decision to have more chemo I just want to get on with it now. I am not the most patient patient as Alan will confirm. I have had my kidney function test which was over 5 hours, tedious in the extreme but had to be done. I have a series of blood tests, a B12 injection and a prechemo chat next Thursday 27^th and if all is OK I will start Regime 4 Cycle 1 chemo on 6^th March.
2 cycles will take me to mid April when I will have a scan and we will take it from there

Spring seems to have sprung this week. The daffodils are in full bloom. crocuses and hellebores too. Alan has been out gardening between showers this week. He harvested a load of beetroots and they are ginormous! So we hastily searched for beetroot recipes and he made a beetroot and chick pea soup. Personally I didn’t like this, too thin and onions too chunky – he will do better next time! I am getting very fussy with food these days so it is a challenge for my masterchef but I like to keep him on his toes. He is threatening beetroot tzatziki today (a tasty pink dip)!

Beetroot tzatziki

Update. Tzatziki is delicious! The boy did good!

I used to wonder about the mentality of people who drove down to the car park on the prom and then stayed in their cars. I wonder no more as I have become one of those people! I now get very breathless in the wind and find it difficult to walk along the prom when it is breezy. So in the car we stayed and we watched cruise liners making their way in and out of Tilbury, we counted wind farms out at sea which seem to be multiplying weekly and we watched the birds, all very relaxing.

I have bought a few more pieces for the doll’s house so hope to restart work on that very soon. My crafting mojo seems to have gone awol recently but I need to push myself to finish all these projects.

There is lots going on which will be of benefit to mesothelioma suffers in the future. Thanks to Linda Wride for allowing me to link to her blog here. Fellow mesowarrior and friend Mavis will be present on Monday at the House of Lords for the presentation of the Saatchi Bill. Thank you Mavis. As usual my thoughts and prayers go to meso sufferers and their carers around the world.

Tess x

Decisions, decisions

Having spent the last few weeks trying to decide which course of action to take I have made a decision. I have sought advice from the Consultant in Palliative Care, the Consultant Oncologist at Barts, my oncologist in Canterbury and perhaps the wisest of all, Alan, my mentor and soulmate. It is very difficult to make decisions when you have imperfect information to work with. We are in fairly unknown territory.

So:

Radiotherapy has been ruled out as it is an inappropriate treatment in my case.

I have decided I will not take part in any more drug trials.

So: 

I was left with palliative care only vs more chemotherapy. Stuck between a rock and a hard place. I could have tossed a coin or stuck a pin in a piece of paper but instead I looked  at a special photo I have of the 2 Grandies and it became clear I had to fight on. Ethan and Lilah need to know their Nana gave it her best shot.

So: 

I will start chemo again within the next couple of weeks. I will have 2 cycles at a reduced dose and then have a scan. The oncologist could tell after this time (6 weeks) if it is having any effect. Although I had a positive response to this chemo last time there is no guarantee it will work again, the cancer may have built up a resistance to it. Depending on the scan result we may or may not continue the treatment.

So: 

To my wonderful family, friends and fellow mesowarriors I thank you for you love and support thus far and I ask you to walk with me once again as I move on in this journey. I am ready to fight once more if somewhat a little scared.

I was listening to the words of this song as we drove to my appointment at the hospital yesterday:

Together we are stronger we can overcome
We can walk this road together we can stand as one
And now nothing can divide us we are stronger together
Together we belong, together we are strong

Blimey! Pass the tissues!

Tess x

Ups and downs

My Amaryllis flowered this week!

Since my last posting life has been a series of ups and downs.

We managed a great weekend in London catching up with lots of friends and family. We started with a lovely lunch with Tony and Roz, lots of news to catch up with including of course, the relative merits of Arsenal and Everton. Then on to join the party for Jean’s 70^th birthday. So good to catch up with the Clarks and Parkers and their partners and offspring. Excellent food, wine and company. Thank you Greg and Julia for being the perfect hosts as always. We stayed in the local Travelodge which was pretty grim but convenient. We headed home on Sunday after catching up with several friends for breakfast in the local cafe Rouge. Thank you Ray for rallying the troops.

Dom, Greg, Alan

Julia, Paul, Jason and Birthday Girl Jean

Tess, Julia, Greg

Jean and Tess and Greg!

Tess, Florence, Paul, Alan

Jean & Paul - great speeches.

After rest day on Monday we were out again for lunch on Tuesday, with Bernie & Norma at the Pearson’s Arms in Whitstable. Excellent fare again but we will leave our next visit until the weather improves as it was sooo windy.

On Wednesday I had a review with the Consultant in Palliative Care at my local hospice. I am still trying to work out a possible treatment plan so there was lots to talk about. Pain control is also becoming an issue and he has prescribed morphine for when non-prescription drugs are no longer effective. Getting scarey now! I am seeing both the consultant at Barts and my oncologist over the next few days, exploring all options. This is the hardest decision I have ever had to make and I am so scared of making the wrong one. Alan reassures me that whatever choice I make is the right one because I made it.

By Thursday both Alan and I were suffering from the lurgy – streaming colds and chesty coughs which really knocked us for 6 for a few days. Must have been too much hugging and kissing the previous weekend! We are just about functioning normally again.

The Grandies continue to keep us amused. Lilah now has a super duper toboggan which she took great delight in demonstrating for us when we Skyped last week. Still plenty of snow in Toronto. Ethan visited the Natural History Museum and was very impressed with dinosaurs.

I won’t comment on the weather as I am sure we have all had enough but the garden is certainly confused with daffodils about to bloom, hellebores in flower, bulbs shooting up very quickly and roses in bud, full flower and hips!

The meso community was deeply saddened to hear of the death of dear Jan. She was a true warrior and fought to the bitter end. I have good memories of meeting Jan a couple of times and how positive and upbeat she always was. My condolences to her husband Gary and her family. RIP Jan.

Steve has started on his journey into the unknown on a drug trial in Oxford. I wish you every success Steve and am thinking of you.

Tess x