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

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

What a Bummer!

Well definately not the news we wanted to hear so early in 2014. We had a meeting yesterday with my oncologist to get the results of my latest scan taken on 2/1/14. There is no easy way to say this but the news is bad. Mr Nasty is very active once more with much thickening to the pleura (lining of the lung). The cancer has now spread to my lymph glands in my neck and under my arm and there is new growth through the chest wall between ribs 10 & 11.! This is bad news.  But we need to keep positive and although we are both still a bit shell shocked we always knew this would happen. We can never win the war against this awful cancer but having won a few battles over the last 3.5 years it has come as a bit of a shock.

So where do we go from here?
My oncologist, bless her really doesn't know what to suggest as she has limited experience of dealing with 'old timers'  like myself and my dear friend Mavis. But her suggestions were:

1)Yet more chemotherapy:

Rechallenging with Carboplatin/alimta
Rechallenging with Vinoreline - I have said no to this as the side effects were so awful and it didn't work particularly well.
Try a different drug she mentioned (vaguely) Gemcitobine but she did not elaborate.

2)She knew of no trials suitable but I pointed out the new trials emerging at St Barts. She was going to email the team there to see what is going on. I will email them myself on Monday.

3)Have no further treatment and 'wait and see'. To me this sounds the same as giving up or perhaps they are different concepts??

So that's where we are at present. My onco will agree to whatever I suggest or so it seems but I will listen to the wise words of my son 'Fight the fucker Mum' (he learnt the bad language at the Catholic school he went to! ) Alan will support whatever choice I make.

Thank you all for your support.

Tess x

2014

Another Christmas and New Year over, decorations taken down, tree packed away, house tidied! So as we go into 2014 we wish you all good health and happiness and a wee bit of prosperity wouldn’t go amiss! Having all the family here for the festivities was great, lots of positive energy generated, the Grandies brought many smiles and a few tears. The Canadians went back on 31^st Dec to very bad weather and a tree down in their backyard (garden). I think they may still be trying to dig the car out! Christmas was spent over in Tunbridge Wells, I think manic is a good word to describe it. Lots of happy memories made.

A Boxing Day walk around the lake in Dunorlan Park blew away the excesses of the Christmas festivities.

We also caught up with many family members and old friends. Met some new people too and a couple of people I never thought I would see again, brilliant! A big thank you to all of you who braved the weather and came to our ‘bash’ on 22^nd.

A visit to the sales (and a nice lunch) in Canterbury was a good way to start the New Year. Still like spending the kid’s inheritance!

As you would imagine loads of photos were taken so selecting just 10 was difficult but hopefully it will give you a flavour of the Gully Christmas.

These 2 inspire me

Ethan loved his spinning top

What a motley crew!

Chillin' with Nana

Dead lions - ahh silence!

A visit to Gadds Brewery

In safe hands - perhaps my favourite photo

Tim and mini Tim!

Happy Lilah

My wonderful family

Not sure what the New Year will bring but we are ready to deal with what is thrown at us. The appointments have already started, a CT scan last Thursday and optician on Friday. The cataract in the right eye has got much worse since August so yet another new pair of specs. The op is probably next on the cards.

Arsenal have made a good start to the year so the Gully boys are happy.

To my mesowarrior friends I wish you all a positive year full of love and hope. Together we are strong – keep fighting my friends, we are making medical history!

Tess x