Tess's Funeral Arrangements Friday 12 September

The Coroner has finally released Tess's body so we can properly lay her to rest.

The funeral will be held at Barham Crematorium near Canterbury at 16:40 on Friday 12^th September and afterwards at Broome Park Golf Club from 17:45. Details of both venues below. 

No flowers please. Our preference is for donations to one of our chosen charities:

Pilgrims Hospices: http://tess.gully.muchloved.com

Mesothelioma UK: http://www.mesothelioma.uk.com/

Barham Crematorium (nr Canterbury)

Canterbury Road (A260), Kent CT4 6QU

Approx 8 miles from both Canterbury East and Canterbury West stations (fast trains from London)

Broome Park Golf Club

The Broome Park Estate, Canterbury Rd, Canterbury, Kent CT4 6QX

(0.5 miles from the Crematorium)

Thanks for all the support 

Alan xx

Rest In Peace

It is with great sadness that I have to inform you that Tess finally found peace last Thursday night (28 August).

Tess was an incredibly multi-talented and gifted lady on so many levels. I am enormously proud to have been her husband. Not only was she a fantastic wife, mother and Nana but also enjoyed a career as a brilliant teacher before she retired. In addition, she could apply her crafty skills in so many dimensions: dressmaking, cross-stitch, quilting, card-making, and constructing and designing a dolls house.

She was inspirational to so many - family, friends, fellow crafters and bloggers, and really cared about doing what was right in every situation she was confronted with. She helped very many people cope with difficult problems, providing tremendous emotional and practical assistance throughout her life.

Thank you for all the support, prayers, helpful comments and best wishes over all the time this blog has been going. They have been so helpful to us both in providing the strength to fight this terrible disease for so long.

Alan xx

As mesothelioma is an asbestos-related disease the Coroner is involved and no funeral arrangements can be made at this time.

Four Years On ...

Tess has asked me (Alan) to continue with her blog for now, as her condition weakens.

It was on 25 September 2010 that Tess went into hospital suffering from breathlessness. She underwent a number of tests and they took a sample of fluid from her chest cavity. She came home the next day.

The following week we went back for the results of the tests - and got the awful news that Tess had terminal cancer. Mesothelioma was a complete unknown to us then, but gradually over the next few weeks and months we discovered so much about this terrible asbestos-related disease of the lining of the lung. Life-expectancy was usually a few months or one, possibly two years if you were lucky. Very few lived any longer.

Tess has fought several battles over the four years since diagnosis. The chemotherapy worked well for some time to shrink the cancer, but it takes its own toll on the body. Surgery was also very effective in keeping the fluid in the chest (produced by the cancer) under control. This was so helpful in dealing with breathlessness and other symptoms.

Despite the wonderful support of family and friends, and the combined efforts of all the all the medical teams, Tess's condition is deteriorating. The cancer is growing and more painful, she continues to lose weight, and we are gradually losing the war.

We now have a care team commissioned by the Health Service to assist me in looking after Tess, rather than the Hospice carers (which was always only on a temporary basis). So far, the girls are very good and gentle with Tess as they provide for her needs. The Hospice team are wonderful at providing palliative care on demand, with the support of our GP and district nurses.

Thank you once again for your kind support, good wishes and prayers.

Alan x

Supporters make the unbearable, bearable.

Tess has asked me (Alan) to write the blog again this week, as she continues to be very poorly.

Thank goodness the infusion Tess had last month reduced her blood Calcium levels back to normal. However, the blood test which confirmed this also showed that anaemia was a problem again, but not so bad as last time. Iron tablets were prescribed to fix it, rather than another transfusion.

The support team from the local Pilgrim's Hospice have been fantastic. They and the district nurses, nutritionist and occupational therapist have provided many items to help Tess cope at home while she is so incapacitated. Last week the Hospice team organised a care package to help me look after Tess, and the girls who come in to care for her are so wonderful.

We have turned our house into a virtual bungalow now, converting our dining room into a bedroom with a hospital bed for Tess overlooking our front gardens - the view of our roses is so much better than the neighbouring roofs Tess used to see from our upstairs main bedroom.

When Tess has been feeling well enough, we have enjoyed the company of family and friends, but sometimes we have had to postpone visits when the pain and tiredness were too great.

The grandies are a great tonic. We now have pictures of Ethan in his new school uniform (he starts next month - how time flies). When we Skype Canada, Lilah likes to show off her piano skills. And best news of all - there is a new grandie on the way over in Toronto! Early days yet but so far Mum and bump are well.

Thanks for all your kind support, cards, flowers, good wishes and prayers. Tess and I really need them now.

Alan x

On a plateau

Tess has asked me (Alan) to write her blog this week, as she is so frail and fatigued by recent events.

So...  Lily the Pink had another blood test to check her red blood cell count was O.K. following the transfusion.

But... It showed she had too much Calcium in her blood (Why? perhaps the cancer, perhaps the chemo).

So... we had another trip to Viking Day Unit for a 2 hour infusion to bring down the Calcium levels on Tuesday 2 July. On the Thursday Tess was feeling quite a bit worse - shivering, increased pain and tiredness, I called the Hospice day nurse who paid us a visit to check Tess out. She was not happy with her symptoms and she called out the Hospice doctor to assess Tess.

So... he visited later that afternoon and concluded the infusion was causing the side effects, but they should gradually diminish in a couple of days.

So... at the weekend Tess was feeling a little better - the awful side effects had gone, but Tess is still very weak, spending a lot of time in bed and struggling with eating. We seem to have reached a plateau.

Tess says I have to mention the grandees - they are lovely and growing up so quickly.

I made Tess some Borscht soup with our first crop of beetroots from the garden earlier this week, and she enjoyed it. We also have sampled the new potatoes (Arran Pilot). However, I have had to spray the beans as they were covered in blackfly last weekend.

One Chemo Too Far

Chemo cycle 3 went ahead as planned. Normally I am ‘0ut of action’ for about a week. This time however, now 4 weeks later I am still suffering from the side effects. My oncologist agreed with me – no more chemo as my body has now become too toxic. So I have come to the end of the treatment she can offer me. I had a scan on Thursday and will see the oncologist in 2 weeks time. 

Meanwhile I had an appointment with the palliative care consultant at the hospice. He took lots of blood samples which showed I was anaemic so on Monday I was in at the crack of dawn for a blood transfusion. It certainly made me look a better colour (no longer a ‘Whiter Shade of Pale’ and more ‘Lily the Pink’ says Alan), and much less breathless but it did nothing to raise my mood – I thought I would be running around like a spring chicken! 

I have been told that I need to lower my expectations as to what I hope to achieve now – this is so hard to do and makes me so sad. I am so pleased that I have such a wonderful carer in Alan. I have another appointment at the hospice on Monday – I am hoping for some nutritional advice/help as I am eating so little.

I hope this brief summary will explain why the blog has not been updated for a while and why emails have largely gone unanswered. Will try and do better!

I receive daily photos of the Grandies. Our lovely Lilah is 3 tomorrow – we will Skype and pop in to her party. They all had a great time together in Florida and I have many, many photos to sort through.

Kissing Cousins!

Please continue with your support. Good wishes, prayers and positive thoughts are what we need right now.

Tess x

Quiet week

We have had a fairly quiet week. I had a difficult time with withdrawal symptoms coming off the steroids. We cancelled our 4 day trip to France which was disappointing but fortunately we were able to re-schedule both hotels and the Shuttle without extra cost.

A visit to my oncologist on Monday was upsetting – Mr Nasty is on the move again. I am having 2 more chemo sessions starting tomorrow. So the fight is on once more. Where are my battle fatigues????

Alan has been busy in the garden. This week he has planted runner beans, peppers, yet more potatoes (bargain from garden centre), tomatoes including a yellow variety (Sun Baby) and the hanging baskets are a work in progress.

Today we went out for lunch at the Ambrette – yummy, scrummy – good local produce and Gadds beer.

The Grandies are fine and will be meeting up tomorrow in Fort Lauderdale Florida – I hope to receive lots of photos of them together.

As always my thoughts and prayers are with my fellow warriors, each following their own pathway, each  at different stages of this awful disease. Together we are strong.

Ray's revamped logo.

I end this blog with a wish that Arsenal do what they are paid heaps to do and win the FA Cup on Saturday – that would make so many happy amongst my family and friends.

Tess x