Easter

I went for a scan on Good Friday. Good to know the scanners are working for outpatients every day except Christmas Day. They just need to get the staffing levels up to the same standard and a few more radiologists to read the scans. So we await the results to see whether treatment stops or continues. The good thing was the hospital car park was virtually empty – if you are a regular hospital visitor you will appreciate what a bonus this was, and only one other couple in the waiting room so another bonus.

Easter weekend was spent in Tunbridge Wells. The weather on Easter Sunday was a bit of a washout so eating, drinking and playing with Ethan were on the agenda. Another lovely lunch cooked by Gaby & Jon – local farm rib of beef – yum! Easter Monday turned out to be a glorious day so Jon and Alan set to and erected the new garden shed. You can tell Jon is fast approaching 40 getting excited about a shed! I asked what was going to be stored in it and was told a chesterfield sofa, a telescope and a beer fridge! This would be funny if I didn’t think it might be the truth! Well the job took them all day but was a job well done. I think they both enjoyed being out in the sunshine and enjoying each other’s company.

Yesterday we met up with old friends Janice & Tony in Canterbury. They were on a short trip south from their home in North Yorkshire. We started in the City Arms where we caught up on news and their recent trip to Cuba and put the world to rights. We then went for lunch in Deesons, one of our favourite restaurants which never disappoints.

The continuing good weather this week has done wonders for the garden. The veggies are all doing well and the roses are just gorgeous.

 

 I received some smashing photos of the Grandies this week – how quickly they are growing. 

Ethan - Superhero

Lilah in her daddy's shoes

 My thoughts as always to my fellow mesowarriors, all at various stages on this journey and all searching for a cure.

Tess x

Update

Just a quick blog update today as I have had a few messages asking how I am. Well after a day’s delay receiving chemo this time all went ahead last Friday. Two nurses, Alan and myself checked and double checked the dosage reduction was correct! I expected that with the reduced dosage the side-effects might be less severe but in fact they were the same but lasted a shorter time – not sure how the extra steroids have affected this. New problems have also emerged, mainly an incredibly sore mouth, inside lips, tongue, gums and soft palette all hurt and I nearly hit the roof yesterday with Sensodyne toothpaste –ouch!!!!!!!!!!! I hope this will all calm down soon.

I have a scan on Good Friday! We did check the appointment and yes the scanner is working all over the holiday. We will wait for the results before deciding whether to go ahead with anymore treatment. So this does mean we will be free from treatments/appointments over Easter. Alan’s services are required in TW where a garden shed needs assembling!

We have enjoyed fine weather this week, Thankfully the Sahara dust has gone and oh my how that did affect me! Alan has been pressure washing and staining the decking. It looks great and final coat going on this weekend. 

Man at work!

Carrots, beetroots, parsnips and potatoes are being planted and the flowers are blooming.

Tree Peony

Plenty of blossom on pear tree this year

Lots of Irises

 Tess x

Made the most of a reprieve

I had my review with the oncologist last Monday. She confirmed I was not well enough to have my chemo treatment last week as I was still zonked out from the previous session. We had a long chat about why I was having such prolonged side effects this time. Basically 19 chemo sessions and 6 months on a drug trial/placebo in just over 3 years have taken their toll and my body is just not so strong. She prescribed steroids to give my appetite a boost and help with fatigue. My next chemo is now rescheduled for this Thursday assuming blood tests are OK and the drugs will be reduced. I will have a scan after this session and take it from there. Perhaps my body is telling me something.

After the hospital visit we met up with Bernie & Norma in Canterbury. We had a good lunch in the new Quex Barn restaurant. Excellent food (and beer and cider) all locally produced.

I have been attending Fatigue Management workshops over the last couple of weeks at my local hospice. This week we had a talk from one of the doctors on how medication impacts on fatigue – very interesting. The final session is Wednesday.

Ray and Jacky visited on Thursday accompanied by guitars so Alan was able to enjoy playing trios once more. We went for lunch in the original Quex Barn restaurant in Birchington which was good. Their company was a bigger boost than the  steroids - they should come on prescription!

Well Big Al became an OAP on Saturday. I hadn’t planned anything as I thought I was having chemo last Thursday but Jon & Gaby cooked a wonderful roast beef dinner and the wine and port were flowing freely! Alan enjoyed himself. A wonderful Mother’s Day for me too on Sunday. Fun with Ethan in the morning (he has discovered the garden hose) and a long Skype with Lilah in the evening. Felt a bit emotional at the end of the day but we had a great weekend. Here are some pics of MD flowers and the Grandies.

Beautiful Mother's Day flowers

 

Biker Boy

Love this umbrella

So into another week and chemo on Thursday. Hope this session is easier for me!

Always thinking of all my fellow Mesowarriors as they continue through their journey including Steve who is currently on a drug trial and will get some results in a few weeks, Mavis awaiting scan results to see what is next for her, Lou who is doing well and about to fly from Oz to America!!

Also thinking of Chris & Mick, hope their daily journey is not too taxing.

Tess x

Foggy Day

I woke up this morning and gazed out of the window

Was the fog outside or inside my head?

Hard to tell

There is poison coursing through my veins

Dangerous, dangerous stuff without principles

It kills good and bad alike, it cannot tell the difference

In its wake it leaves so much damage

Some can be repaired and I guess some cannot

Who knows?

But I need to take a stand and fight this invader

Hard when I have the energy of a gnat and an appetite to match

I must fight, I must fight

The fog is clearing a bit, perhaps the sun will shine later.

 

Tess x

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