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.
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.
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.
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.
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.
