Almost There

I have been lying low and resting more than usual and I think it has paid off as the side effects have been much reduced this time round on cycle 5 – or perhaps I have just got used to the poison coursing round my body. Cycle 6 will start today Friday (21^st) and this will be the last course of treatment - so fingers, toes and anything crossed that it has done some damage to Mr Nasty. It has been a long haul since February and I am so grateful to all of you that have kept me buoyed up. Will let the poison do it stuff till the end of this cycle (21 days) and hopefully then I will get our life back and can plan a few treats. A visit to the French brewery is high on the agenda for my trusty carer!

The meso community has been hit hard this past few weeks with so many deaths – all avoidable if not for man’s greed. My dear friend Debbie who I wrote about in my last blog was one victim to this awful disease. She was a true inspiration to us all in and lived life to the full for as long as she could. I will miss her so much. My condolences to her three children and to all friends and relatives of recently deceased warriors. The only way to stop this carnage is to find a cure through more research  and have a global ban on asbestos mining and exporting.

Life has been ticking over slowly but we managed a weekend over in Tunbridge Wells. Alan’s help was needed to erect a rather large wooden climbing frame for little man. I do mean large! Three robust men (Jon, Alan and Berni) managed to build the two towers in a weekend! It is still lying on the lawn waiting to be set in concrete. Watch this space!

How many men does it take to screw in a screw?

The Grandies continue to give us so much joy. Ethan is now into Rugby and has joined ‘Rugby Tots’. He has a ball (funny shape), a kit, and 6 mini cones which he lines up in the living room and we have to run in an out. The Arsenal fans in the family (and there are lots) need to sort this one out!

Our lovely Lilah celebrated her 2^nd birthday on the 15^th. My how she has grown and getting quite vocal! We Skype each weekend and she always demands a song! Alan is willing to oblige and plays guitar and we sing silly songs.

Ethan has been strawberry picking!

Lilah enjoying her 2nd birthday

My masterchef has continued to cook delicious food for us. So much so, I have put on 1kg in the last 3 weeks! He has a theory (not without some scientific evidence) that the more colourful the better. The chicken curry this week was most delicious and his crispy duck is very moorish. Thanks honey!

Yummy chicken curry - and he cleaned the hob afterwards!

Belated congratulations to my cousin Peter and Elizabeth who celebrated their Silver Wedding anniversary earlier this month – hope the celebrations went well. We were with you in spirit and drank a toast to you both.

Tess x

Back on Track

Chemo cycle 5 went ahead yesterday. My blood levels had recovered sufficiently thank goodness. Treatment went smoothly without any hitches this time - cannula on target first time! I am feeling OK today after a bit of a rough night - it's those gremlins that visit at 3am that really get to you! Steroids, antisickness tabs and laxatives being consumed so here we go again!

The weather has certainly perked up. last weekend (bank holiday) was glorious. We had a walk along the prom at Minnis bay on Monday. The main beach was the busiest we have ever seen it. Lovely to see families having fun with the kiddies building sand castles and eating ice creams (just like we did on a Bank holiday). We had a cuppa and cake in the cafe and watched the wind surfers - some of them clearly novices! Alan insisted on taking a photo using his new 'big boy' phone!

Enjoying the sea breeze at Minnis Bay

The garden has burst into life this week. The poppies are just spectacular - approx 10 inches in diameter! perhaps we should start cultivating opium - now there's a thought! Irises, roses and aliums (alia?) also bountiful

alium

yellow, white and blue irises

 

Beautiful poppies

Roses which smell as good as they look.

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This week we have changes to hi-speed cable internet (only just available down here) and we have gone from download speeds of between 0.5 and 1 to 20.8 which is brilliant. I even get Ray's daily jokes before he has even sent them!! Alan is delighted because he downloads lots of music which used to take hours.

Special thoughts today to my dear warrior friend Debbie who is having a really difficult time right now but the hospice staff are taking good care of her. Thoughts and prayers are with you  Debbie hope you will be home soon. xx

Tess x

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A fillip to the system

It has been a good week. Having an additional week between chemo treatments whilst we awaited scan results we decided to take off for few days.

On Friday we set off for Rye stopping at the Chapel Down Winery en route. Here we had a good lunch and Alan made a few purchases from the wine shop.

Rye was wet and windy so we didn’t walk about for too long. We had a lovely meal in the The Ambrette which never disappoints.

On Saturday we drove to Herstmonceux Castle somewhere we had never been before. Herstmonceux is renowned for its magnificent moated castle, set in beautiful parkland and superb Elizabethan gardens. Built in the 15th century, Herstmonceux Castle embodies the history of medieval England and the romance of renaissance Europe. I managed a lovely walk round the walled gardens but the wind was too strong for me to do much more.

Castle with moat

Walled garden (part of)

We drove up to the Observatory Science Center

We then met up with Bernie and Norma for a drink and bite to eat. The pub we chose was disappointing but we did manage to get fed and watered. Back then to Rye and another great meal in Webbes.

On Sunday we headed home via Tunbridge Wells. Jon & Gaby are fine and Ethan is just gorgeous – lovely to be able to have a proper conversation now.

So Monday was the day for seeing my oncologist and getting my scan results. The good news is that she confirmed that after 3 cycles the chemo is working and knocking back the cancer. Meso sufferers are always delighted to get a ‘stable’ result so ‘reduction/shrinkage’ is amazing. Relief does not adequately describe how Alan & I felt on getting this news. So now we continue for cycles 4, 5 & 6 although I shall review after each one. The chemo is tough and the oncologist was a little surprised that I wanted to continue but I have enough nous to know when it is time to say 'stop'. Also I was delighted to see I had gained 1.5 kg over the last week or so.

As I quite enjoy being a lady wot lunches we went along the coast the Broadstairs yesterday and had lunch in the Royal Albion on the seafront. We were amazed to see a large seagull attack a customer's plate of fish and chips! Poor lady nearly jumped out of her skin. A walk along the prom then before driving home. Its been a good week. So chemo 4 scheduled for Friday. 

Some positive vibes needed please for several fellow meso warriors and their carers who are going through their own  private hell at the moment. Special thoughts to friends Mavis and Debbie who are about to start another regime of chemo. Walking together we are strong. Tess x

Out of hiberation

It has been brought to my attention by my trusty friend Raymond that I have been somewhat lax in updating the blog. The truth is that my current chemo regime has knocked the stuffing out me and I just couldn't summon up the energy!. I am doing OK and have just got through cycle 3. Today the sun is shining, the plants are sprouting and flowering and Spring has arrived here in Kent, and a visit from Ray and Jacky added a few more rays of sunshine! I still have 3 more chemo cycles to do. Cycle 4 is scheduled for next week. Thank you for all your thougthts, emails, cards, jokes and good wishes. I will try and update next week after my visit to oncologist. Keep walking with me.
Tess x

Regime 3 Cycle 2

14th March
I seem to have missed posting this blog entry so somewhat late and updated here it is!
Starting with the beautiful flowers I received for Mother's Day.

Had appt with oncologist on Monday in Canterbury. Did not see her but her registrar. A very nice young man and I mean young. I could have been his mum and at a push possibly his grandmother! He called me 'an old pro' which made me smile :) He was concerned about the side effects especially the fatigue going on for so long. The upshot is that cycle 2 will reduce the dosage of both drugs by 20%. He will see me again after cycle 2. I am happy with this as I thought maybe they would stop treatment. 

We stopped off for lunch  at Minnis Bay. Wild winds but I had a lovely lunch of roasted flounder. Alan had something called 'The humble pig' - not a very healthy option (sausages, belly of pork, pork chop etc and roast potatoes) but he did enjoy it! We watched the waves crashing over the prom and the poor seagulls trying to fly against the wind. I kind of empathised with them!

 

Thursday was chemo day. I did check that there was the 20% reduction in drug concentration! All went without hitch this time - hopefully i will be able to report less side effects this time.

Cycle 2 Day 17

So here we are now with the Easter holiday almost over.

I have found this cycle very difficult despite the reduction in chemo concentration. I have just been so lethargic and lacking in energy everything seems so much effort. My head had been clearer and I have not been so zombie like. The fierce Arctic winds have kept me house bound as it is so difficult to walk and breathe in those conditions.  I saw the consultant last Monday and we agreed to continue with chemo 3 next Friday and then to have a scan after that. Chemo 4 will be delayed until I have seen consultant again with scan results. A decision will be made then as to whether the chemo continues.

Good Friday was a good day - it was Alan's birthday. Jon, Gaby, Ethan, Bernie and Norma joined us for a celebratory meal. They all stayed overnight and judging by the number of empty bottles in the recycling box a good time was had by all. Ethan is great fun now full of mischief but so adorable - he likes to pat Alan's head and say 'No Hair'! Bless!

On Saturday we received some devastating news. My young cousin Tristan died suddenly at only 21. He suffered a blood clot after a 20+ hour flight home from New Zealand where he had been for the last 6 months on his gap year after Uni. I find it difficult to write about this as I cannot really understand or make sense of it. Such a waste of a young life. My thoughts and prayers go  to the immediate family I hope they will together find the strength to get through their darkest hour. RIP Tristan.

Easter Sunday. We had  to go to A&E   as I had a blocked valve on the chest drain. This was beyond the capbilities of charge nurse Alan!  I cannot fault the treatment I received in A & E. They sat me in quiet corner as I am on chemo and the waiting room was packed. I was called in very quickly and triage nurse said they would not have clue as they hadn't heard of a pleurx drain! She phoned the respiratory ward to see if the nurses there could help and was told only a doctor could flush the valve. What are the chances of finding a thoracic doctor on call on an Easter Sunday afternoon? Well only 5 mins! As luck would have it one such doc was just leaving the resus unit! Half an hour later drain was debunged and draining ok. So all is well but it does make me wonder how patients can be sent up to London for the op but locally no-one seems to know how to deal with it. More questions for my thoracic consultant when I see her next month. 

So more chemo this week - will try and update blog. Tess x

Regime 3 Cycle 1

Chemo day started off well – empty car park, called on time, cannula fitted on second attempt, drugs going in nicely. But then on the very last saline flush I felt my arm getting ‘tight’ and when I looked it was swelling up just like a balloon around the cannula – yes it was leaking fluid into surrounding tissue. The nurse was very efficient and went into ‘emergency’ mode. She had to assume the chemo had leaked too and immediately gave me 4 steroid injections around the perimeter of the ‘balloon’ and one in the center – the pain was excruciating and made me cry. My arm was then wrapped in an ice pack and I had to wait about 30 mins by which time it had gone down. Thankfully I have not had further problems. 

We are now on day 13 of the 21 day cycle and I am just beginning to feel a little like ‘normal’. I think I have ticked every box on the chemo side-effects chart this time but perhaps the worst is the overwhelming exhaustion and lethargy which I can’t be doing with! Emotionally it has been a difficult time too both for me and for Alan who has to watch when I go into despair and despondency mode. I am still losing weight although I am now eating ‘little and often’ – perhaps too little not often enough. I don’t think I appreciated how weak my body had become over the last couple of years with the effects of 2 previous 6 cycle chemo regimes, 6 months on a drug trial and thoracic surgery. I no longer feel like Superwoman!

But all is not doom and gloom and life goes on. The sun has shown its face this week which has made such a difference. The garden is sprouting and Spring really does seem to be trying to make an appearance. Alan’s potatoes are ‘chitting’ nicely upstairs. It is good for Alan to escape into the garden.

We are now the owners of a beautifully terracotta tiled front porch! We had noticed a couple of moths in there and thought maybe they were laying eggs in the wool carpet tiles – so up they came! Beneath the tiles were some old tiles which we scrubbed, scraped, washed, wire wooled, brushed, and painted and voila! They came up like new! When I use the word ‘we’ here you understand I mean ‘Alan’!

For Christmas Alan & I were given a poster – a collage of our beautiful granddaugter’s art work which she did at nursery. We have just had this framed and thought I would share it with you. I have hung it above my computer so I see it every day. Lilah is now 21 months old.

 

So hopefully I will continue to regain my strength this week. Next Monday I see my oncologist to assess whether I am fit for cycle 2!

I thank you for your continued good wishes, jokes, cards, emails, prayers, cake, flowers  etc. Special thanks to my mesowarrior friends who are there 24/7. I am blessed to have you all in my life.

Tess x

Valentines and Pancakes

Well I am pleased to say that things have moved on since my last blog entry. I am having yet more blood tests, an injection and a pre-chemo chat this afternoon and if all is well chemo is scheduled to start next Thursday 21^st. They are using a different combination of drugs this time which should be gentler on my body. This treatment is just palliative and not curative but if it works and gives me a few more months of good quality living then I will grab it. I am not looking forward to it and to be honest am rather scared but needs must. My treatment will be done in my local hospital so at least travelling won’t be an issue. I will try and keep the blog updated.

Well Masterchef Alan excelled himself once more with the cooking of pancakes. I had to reject the first one he offered me as it wasn’t cooked enough for my liking but he is a quick learner and the rest were superb. His maple syrup and banana ones deserve a special mention.

We had another good lunch out this week. This time with cousins Paul & Jean. Always good to see them and catch up with their news and that of their wonderful family. We went to Bartellas in Meopham – a lovely venue. Thank you guys.

I have received some lovely gifts – beautiful flowers from fellow mesowarriors – what a caring, sharing bunch of friends they are. 

Also a gorgeous mat / wall hanging which my son bought for me on his recent trip to Japan. He knows I love anything a bit arty farty!

So that’s it for this week apart from wishing our son Jon a very happy 38^th!!!!! Birthday today – have a good one honey!

Onwards and upwards!

Tess