The garden

Here are the photos of the garden.

The first one is of the vegetable plot.  Derek has dug all the beds and has dug compost in.  Sue and Peter from next door have cut the grass around the vegetable plots and around the greenhouse.  There is some chard and also the strawberry plants on the right are flowering.  How neat and tidy is this now.  In the background are two compost heaps - the right hand one is like a skyscraper!

This is the fish pond.  It was just full of weed and hardly any room for the fish.  Derek and Peter have cleared it and it looks great.  

Photo below is just behind the fish pond and was an ocean of weeds.  Derek removed the sweetpea canes, and then all the weeds - it took him all morning.  As you can see we have some rhubard.  The raspberry canes on the right will also need to be sorted out at some time.

This is of one of some clematis clambering up the fence.

Thank you to everyone who has helped to make this garden lovely again. 

Hurray for Farliegh Hospice

Had a visit from the Specialist Care Nurse from Farliegh Hospice yesterday.  She was very kind and very helpful.  I think we have sorted out my worst problem which is not being able to go for a poo.  Sorry to be basic - but this is very important when its not going right!  One of the laxatives I am taking is Lactolose.  The doctor at Farleigh said that this has the effect of pushing the poo through.  So every time I take it, it is pushing and pushing and that is what is causing the horrible pain.  So we are going to up the other laxative which is more gentle and more of a softener.  I don't know if it was just having had that conversation with her, but yesterday evening I felt fine - no pain.  I sat still on the sofa unable to believe my luck.  And this morning all it still OK.

She is also arranging for a doctor from my GP surgery to come and see me today.  She said it would be good for them to examine my tummy with stethescope to hear if the bowel is working and just to confirm that we don't have a case of total blockage.  If that was the case, then I would have to go straight to A&E.

The Farliegh Hspice is so wonderful.  I can't believe the good work that it does for its patients.  My heart is full of praise for them.  The nurse said if things get bad then I can come in for a few days for them to look after me - if need be.  It is also reassuring to be able to phone the SCN at any time, or even phone the Helpline with any questions I might have.  A Big, big thank you to Farleigh for all that they do.

So yesterday was a restful day.  Our lovely neighbours came and did some work in our garden which is now looking wonderful.  The grass has been cut and all the edges have been trimmed.  All looks lovely in the morning sunshine.

I have taken some photos of the garden but they are not coming off my phone.  So will post them in tomorrow.

Random thoughts on a Tuesday morning

I am sitting downstairs in the sitting room.  It is nearly 8am and a lovely sunny morning outside.  I have hung out some washing on the line and fed the birds.  I am now updating my Kindle.  In the past I have always used the Wickham Bishops library for books but now it is too much to go up there, so the Kindle is best.  

Last night we watched the Chelsea Flower Show in the television - it was so beautiful.  They really have improved on it.  The flowers were absolutely wonderful.  I enjoyed it so much.

Not feeling so wonderful this morning so it is quite nice to just sit here quietly reading, or writing things.  We have had good news from Jenny - Ian's daughter who lives in Germany.  She and Daniel got married at the registry office yesterday - so they have tied the knot legally.  The wedding will be at the end of October.  It is so good that she is now settled with job and husband and flat - all going well.  I am very pleased for them.

A decision on Chemo

Well I have come to a decision on having chemo.  I think it is too much for my body to cope with.  I am having enough trouble without the added troubles of chemotherapy.  Having had the intravenous chemo on Friday I now am supposed to be on a course of chomo pills for nine days.  So I started the pills on Friday night and continued with them on Saturday morning and Saturday evening and I felt absolutely awful.  It was almost like my body was beginning to shut down.  I could hardly walk.  Jessie and Charlotte came round on Saturday and even then I could not rally but just sat there feeling awful.  I suppose I didn't realise what was happening to me.  In the evening Ian said it was probably the chemo.

So no more chemo.  It was offered to me by the oncologist as something that "might make me feel better" and defininately not as as possible cure, so I don't feel like I am turning down a good thing.  It is now Monday morning, and I am actually starting to feel a bit better.  The pins and needles in my arm where the canula went in have nearly gone now.  Yesterday (Sunday) I spent most of the day asleep.  The other benefits of not being on chemo is that I don't have to stick to warm/hot food and drink which will be good.

So I am hoping I am going to feel a bit better today.  At least I have got some energy to write a bit of this blog.

First chemo session

Yesterday I went Broomfield for my first session of chemo.  I was not particularly looking forward to it but when I got there I felt OK.  It is a great unit.  Everyone is very welcoming.  There is a nice lady who makes cups of tea and coffee presented on a little tray with a biscuit, the radio station is playing music in the background.  After a quick visit to the doctor we went through to a large room with comfortable green chairs and pillows, a little table for your bits and bobs and another chair for whoever is staying with you.  You are assigned a nurse who looks after you throughout the sesssion.  My nurse was Minnie and she came from Thailand and she was very sweet.  First thing she did was take blood to check I was OK to go ahead with the chemo.  The results came back within the hour and all OK.  The prescription for my chemo is then requested at pharmacy, made up and brought to the unit.  Soom I was hitched up with the canula.  

Ian stayed for a while and then after a bit went back home as Derek and Sharon were in the garden today working.  Anna popped in at about lunch time and we chatted.  She had just been to Theresa the dressmaker with Charlotte and Emily to see about getting the bridesmaids dresses.  She said she felt shattered because Zaffy had kept her awake a lot during the night.  

Anyway after Anna left I made the fatal mistake of taking a sip of cold water.  That immediately set off terrible spread of pins and needles in my arm where the canula was.  Ooohh... it was painful.  My poor little arm is so thin and does not offer much protection.  Minnie my nurse wrapped it in a heated cover which helped.  I then fell asleep for a bit and woke up feeling not so good.  The last time I had chemo we discovered that my body is not any good at allowing medication into my system too fast - or even at a normal rate - it has to be really much slower.  Although they had slowed it down, I think because I am now so much less fitter than I was last time, it was not slow enough.  I felt miserable, nauseous, yuk.  The bag had finished by then, so all that was left was to do the flush.  Next time we will slow it down more. Anna arrived with Tano and they took me home. 

Sharon and Derek were still at the house.  What a wonderful job they have done in the garden.  Derek has worked like a trojan.  It is actually their birthday present to Ian and what a good idea too!  All the vegetable plots have been dug over and composted. The area around the raspberries has been totally cleared of weeds and we can now actually see 6 rhubard plants.  All sweetpea canes removed and cleaned up.  Needless to say the second compost heap is now as high as a skyscraper - but will settle soon.

I did not sleep well last night and was up at about 3am and have been pottering around since.  My left arm still very delicate.  Another effect of the chemo is that I cannot eat or drink anything cold.  So general re-think of diet and drinks.  Also it will affect my hands and if touch anything cold.

Lots of visitors

Oh my goodness!  Yesterday we had so many visitors - it was amazing.  First of all the Specialist Care Nurse from Farleigh Hospie came at 9am to speak to me about the services that the hospice have to offer.  She came with a junior doctor on work placement at the hospice and they were here for about an hour and half.  Her name is Sharon and she has been assigned to my case.  The most incridible thing was that she was able to go through all my medications, explaining everything, make changes etc.  She then phoned my GP surgery and updated my prescription and asked them if they would delivery it to my house that evening.  This is so wonderful because it means I don't have to get up to the surgery, wait in a queue and collect the prescription myself.   She has increased the background painkiller Oxycodyne from 20mg to 30mg twice a day and added some other medications as well.  So I am very pleased about that.

Derek (Ian's brother) and his wife Sharon arrived at about 9.30am to help with the garden.  Such a pity that the weather was cold and wet.  But Derek has dug and weeded the vegetable plots and Sharon has started on weeding the flower borders.  Peter from next door came round to help with removing the overgrown weed from the pond - so at least the fish can now breathe!  After lunch the rain was becoming a bit relentless, so we sat round the table eating and drinking coffee etc. 

Then another surprise visitor.  Danny came with the most wonderful hamper of food for me from that posh store in Marks Tey.  He had read the blog so had bought some of the food on my "what I can eat" list.  What a man!  I am full of admiration for him.  I've never had quail eggs before - so that was a first!  Thank you very much Danny.  He also said he might be able to help us with clearing some of the rubbish from the garage next week too - which will be great.  So many offers of help - its wonderful.

Then next to arrive was Lindy and Mum.  They had been to Margery's funeral in Stansted Abbotts.  Mum said it was great to see her cousins and members of the Atkins family she had not seen for a very long time.  Margery was in her nineties.  I have not seen my Mum for months and months as she has not been well with her sciatica and not being able to travel too far.  So we had a good catch up.  Lindy made some beef stock from the bones Ian had got from Holts.  It has been simmering on the stove all night.  It is wonderful stuff - so good for the gut.

Our last visitor (briefly) was Kath Adkins.  She had very kindly made us a shepherds pie and just dropped it round.  What a kind person she is. 

So today is D Day - off to Broomfield Hospital for my first session of chemo.  I am bracing myself for this and not particularly looking forward to it.  Ian will take me but will come back to the house because Derek and Sharon are here again today to work in the garden.  Hopefully they will be able to get a bit more done as the weather is supposed to be better.  Anna is going to come up and see me at lunch time.  Then she will come back at about 4pm to pick me up and bring me home.  She will have Zaffy with her then so will not stay in the chemo unit - just pick me up.

I will need to take supplies for today.  My lunch time pills, food to eat, a good book, suduko, maybe some music to listen to.  I might even get a bit of nap in! 

Its good to be able to write this blog and record everything and just reflet on things as well.  Thank you for reading it.  Do leave a comment if you want, or email me.

Visit from Susie and Laurence

On Monday Susie and Laurence came to see me and brought lunch with them!  What a treat for me to have mushroom soup made from scratch by top London chef, Laurence - it was absolutely delicious!  Charlotte came as well with Grace and Hope.  Here are some of photos of us around the lunch table - the sun shining, Grace - with her own table! and me holding Hope.

It was good to be able to catch up with Susie and Laurence after their holiday in Mallorca - they both looked so well.  Susie is setting into life in France too which is good.

Lets hope this lovely weather continues.  Ian's brother Derek and his wife, Sharon are coming up from Bristol on Thursday and Friday to help with the garden which needs lots of work, particularly the weeds which are now growing like mad.

It was great to see our lovely neighbours, Sue and Peter for a coffee this morning.  Peter has said he is happy to also help us with the garden - which will good.  All hands to the pump!

Tomorrow morning Revd Hilary is coming to give us holy communion - always a pleasure to see her and catch up with what's going on at church.

So life moves on and all is well with the world.  I have a set routine every day - it just seems to happen that way but it works for me.  Yvonne was here this morning cleaning the house.  What a luxury it is to have a clean house every week.  It certainly adds to a general sense of calm.  Tesco delivered the groceries this morning - so fridge and freezer well-stocked again!  Only blight on the landscape is the dishwasher has stoppped working which is a bit of pain as now we have to wash up.  Haven't done that for ages.  Anyway we have Alan  Taylor from Domestic Appliance Repairs coming tomorrow to have a look.  I found his details in the Parish Magazine and our neighbours know him and say he is very good.  Lets hope its repairable.

Feeling Positive

Just been looking at some photos of the family on Facebook celebrating my mother's 86th birthday tea party on Saturday.  This is a photo of Mimi (far left) with her grandchildren and partners and great grandchildren - and what a lot there are!  We are so blessed in our family.

Ian and I had a spur-of-the-moment visit from Anna and Zaffy yesterday (Sunday) and also from David (brother) and Helen.  It was lovely to see them all and we sat outside enjoying the sunshine.  David mowed the lawn and Anna and Helen did some much needed weeding.   

It is wonderful for me to feel so supported and loved. It makes me feel very positive and happy.  It has also been very positive having had more discussions with the healthcare professionals lately.  I now feel that I understand my medical condition so much better and am therefore in a better position to know what to do and what to expect.  I suppose many people would think that I must be feeling confused and upset but in fact I feel the opposite.  I suppose what I am feeling more than anything is grateful for what God is providing for me in so many ways, making my life comfortable and happy.

A Second Opinion

Yesterday Ian, Anna and myself went to see a Mr Saddiqic privately at Springfield Hospital.  The reason for the appointment was to get a second opinion on my condition.  The meeting was very beneficial and it was good to get a different perspective on what is happening to me.  I was only able to give Mr Saddoqic the latest letter from my oncologist, Prof Tahir.  But Mr Saddiqic works with Prof Tahir and has in fact been party to discussions on my case in their multi-disiplinary meetings at Broomfield Hospital so was aware of my medical condition - which was good!  (In fact Anna and I recognise him from Broomfield.)

He started off by explaining that in fact my condition is a lot worse than I had been aware of!  It would appear that the CT scan only picks up tumours of a certain size.  It is obvious that I have a lot of tumours causing havoc with my colon but they are fairly small and so far have gone 'under the radar' of the scans.  When I was admitted to hospital in April this was due to a blockage in my small intenstine which has now been resolved.  But the tumours are causing disruption to the mechanics of my colon hence bad constipation, pain etc.  Added to this, adhesions from previous operations will also continue to cause blockages so I need to keep to a fairly liquid/soft diet.

On a postive note Mr Saddiqic said that he is surprised that I have in fact lasted as long as I have!  After the 2011 surgery to remove the tumour and then followed by the hysterectomy a year later, most people with my cancer would have died.  But I am still here - four years later!!  I was delighted to hear this.  It has allowed me to see my two wonderful daughters settled with their lovely families and to have this time with my three grandchildren.

I feel so blessed.  I am just so grateful for all that life holds for me.  I love my whole family and get so much love and support from them.  Here is a lovely photo of some of them on Mimi's birthday standing in front of the wisteria at the Mill.

We then went to Broomfield Hospital because we had an another appointment with the oncologist Prof Tahir - again to ask more questions.  Charlotte met us at the hospital with Grace and Hope and we told her what we had learnt from Mr Saddiqic.

There have been plenty of tears as we now realise from all our various meetings and discussions with different health professionals that the time has come to put my affairs in order.  Of course no-one can put a time limit on how much longer I've got.  A lady from Farleigh Hospice is coming to see me next week to talk through all that they have to offer in terms of practical and emotional support.  We have also been advised to apply for a blue badge for the car and also to apply for some financial help in terms of benefits.

So here I am.  Fully supported, feeling blessed and yet at the same time dealing, not only with the everyday practicalities of illness but also with the emotions of what it means to come to end of life and all the implications of that. I am so grateful to Ian who keeps me rooted with his calm and practical outlook on life.

Just come to a decision on diet

I have had having a little think about my diet and I think I may be making things more difficult for my poor old colon. Last year I went for a food intolerance test and was told I had a lot of yeast in my colon. I was advised to remove sugar, yeast-based foods such as bread and marmite as well as honey and vinegar which I did do. But afterwards I found myself on a miriad of different diets all trying to achieve different purposes and since then I have rather lost the plot.  

Since leaving hospital I have been told I need to be on mainly fluids and soft foods to allow food to pass through the various blocks and twists and turns in my colon. So with all this in mind, I am taking out all sugar and yeast-based foods.  These foods 'feed' the gases in the colon and are probably causing havoc.  So with the added filter of 'low fibre' soft foods this will be challenging  to say the least. 

So this looks like what I will be able to eat.

Avocado pear
Baby spinach
butternut
potatoe 
Yogurt
Milk
Eggs
Butter
Beef
Chicken
Beef stock
Lettuce
Cucumber (no skin or pips)
Soup with no bits (cream of chicken)
plain crackers
stewed apples


So i could have lettuce, cucumber and yogurt and avocado.
Beef/chicken stew liquidised with mash potatoe
Mashed potatoe with butternut
Soup
Stewed apple and yogurt for breakfast
scrambled eggs.

Its an idea.  Will let you know how I get on and whether it brings any improvement to the pain, discomfort and rumblings of my tummy.

The first blog!

Well today is Monday 4th May 2015 and it is a Bank Holiday.  I got up early - as usual and have been busy around the house.  Mornings are the best time for me.

I have been inspired to start writing a blog after reading Tamsyn's blog which she has just started, chronicling her illness.  She says that feels she needs to be able to step outside the minutiae of every day challenges and get a perspective from the outside.  Are things actually as bad as they feel?  Could she do things differently?   I feel this is something that might help me too.  Also there are people who know me, my family and friends, who have been so kind to me and so many different ways, who would be interested to know how I am coping.

Well, so where to start?  Well, as I said, mornings are the best time of day for me.  I usually wake up at about 5.00am and this is because my stomach is aching and won't go away.  So the best things is to get up, go downstairs.  The first pill to take is Lansoprazol which lines my stomach and stops any excess production of stomach bile.  I can then eat after 30-60 minutes of taking this.  I usually wake up ready to eat (always have).  At the moment I am on a diet of fluids and soft food as my colon has lots of lumps and bumps - a combination of adhesions from previous surgery and the cancer roaming around my torso region.  The result is digestion does not take place very easily.  My appetite is small (I now weigh 54kgs) and I am never sure how my stomach is going to react after I have eaten something.  Also opening my bowels is a painful and often abortive process.

The second lot of pills I take is Oxycodone which I take twice a day.  It is a background morphine-based painkiller and works really well.  After eating some breakfast I then take  Dexamethasone which is a steroid to strengthen me and Docusatel which is a gentle laxative.  I also take paracetemol every 6 hours.

For breakfast at the moment I am having stewed apples and yogurt and Nestle Mocha Cafe Menu where you just boiling water and stir.  Mmmm.. what a treat!  I like that.  Food for the rest of the day is a series of trial and error and nibbles or this, nibbles of that.  If I feel hungry then scrambled eggs are good.