Getting on With It

It has been an uncomfortable few weeks, but boy has it flown, it is hard to believe that Easter has been and gone, we have had our first May bank holiday and are quickly heading towards our next one at the end of the month. We had a lovely Easter, starting with another friends 50th birthday party, followed by the majority of the family coming over for a meal on Easter Monday. Lots of chocolate was given and received and amazingly enough we still have some left. Not much mind!!

On the Tuesday after Easter I had my liver MRI, which included my abdomen this time, which is usually done as a CT scan. But as I am continuing to have problems with stomach pain and bloating, and I was to be part of the MDT discussion at the end of April they wanted as good and up to date picture as possible. This involved me having to drink a contrast that would light up my guts, which I can honestly say is the most disgusting thing I have had to drink in a long time. I was gagging after the first cup and I had to drink a litre of the stuff over the period of an hour. This is not a protocol usually used for cancer patients, so that may explain why a flavouring wasn’t used with it, but if I ever have to have it again I will insist on something being added. The contrast is usually used for patients with crohns disease, it is a laxative, normally used to clear out the system I believe, and needs to be handed over by a doctor rather than the nurse.

One thing I am not in need of is help in the laxative department. To be fair I was given a very mild version of the contrast, but they have found that it also lights up the intestines nicely for the purposes of MRI. Also, I was informed that the scan could take up to two hours, but if I needed to go to the loo they could stop at any time. Luckily for me it only took just over and hour, and I managed to get home without incident.  it was a long tiring afternoon though, and I even drank some of my husbands coke to get rid of the taste out of my mouth, I don’t do fizzy drinks these days, so that will give you an idea of how desperate I was to loose that taste. It did linger for a long time, yuk…  Needless to say my sleep was disturbed more that usual that night. I expect to get my results and an update on the outcome of the MDT on the 24th May.   I also collected my blood results from my last visit in March and my 5IHAA has gone up again, as I had my bloods done before the scan ready for my next consult I will be interested to see if this is just a bump in the road or an ongoing issue.

My stomach pain is pretty constant at the moment, most of the time it is manageable, and I avoid taking the painkillers when I can. It is definitely slowing me down, and I have had yet another urinary tract infection which required two lots of antibiotics.   Next week when I see my GP I am hoping to go back on the prophylactic antibiotic treatment as this worked a treat before Christmas. There is the option of having an oestrogen implant in my bladder, but after doing some research I do not think that it a good option for me.

We have been trying to make the most of the good weather and get in some walking ready for our annual weekend with friends, which is next week, rather than August this year. We also giving the peaks a go rather than going to Snowden, so I will give you an update on that in the next blog.  The good weather has also brought on a spate of spring cleaning and gardening, but I really do not like the way it tires me out. Gone are the days when I could go through the house and get a good spring clean done in a couple of days, top to bottom. Getting one room done in a day is quite an achievement these days. As for the garden, it is in desperate need of TLC, and even though it goes against the grain to just go at it ‘hammer & tongs” and getting it all done in one go, I am just doing very small sections at a time. I am only talking about weeding and tidying up to, I am not one of life’s gardeners. Don’t get me wrong, I love a nice garden, just not the work that goes with it, luckily whoever designed the garden we have seems to have had this in mind too.

I also had the pleasure of meeting up with Lyn Wilson another NET patient, she has had a bit of a roller coaster ride these last few months, and had surgery earlier this year. We had a good long chat, the time just flew, we had lots in common and it really was like meeting an old friend. Lyn got her results from surgery last week, and I am very happy to report that it was good news, the tumours were low grade and non-aggressive, she is clear. Lyn will continue to be monitored regularly, but I do so love to hear good outcomes with this disease, and I look forward to our next meet up and celebrating her results.

I had a visit to see the eye specialist to check out my leaky eye on the 3rd May, this confirmed that it was not dry eye as first thought, but a narrowing of the tear duct in my right eye. The usual recourse for this is surgery, but as it is sporadic at the moment I decided not to take that option. This is on the understanding that if it does get worse I go back straight away, but as this may not happen I am quite happy to manage it with eye drops for now. It is enough for me to know what the cause is. The same night we went to see the comedian Micky Flannagan, thankfully the coloured eye drops and anaesthetic had worn off by the time we got there. He was on top form.

Then last weekend it was Peter Kay’s Dance for Life in Leeds, we were a bit more daring this year with outfits, than last year in Birmingham, very 80’s. Before going into the venue we were interviewed, not to sure how good a job we did, or who interviewed us, but I am on the case for that one. Lots of people were asking what NETs was though, and we were more than happy to tell them. It was a great night, although I was flagging by the end, I really hope that this is going to be an annual event.

The outfit will also be getting a second outing in June, as I will be wearing it to do the Race for Life at Trentham Gardens on behalf of Cancer research. My daughter and some friends will by running it, but I will be walking. My daughter ha set up a sponsorship page called Team Zebra, and if you would like to sponsor us and help us reach our target, this is the link Race for Life 2017, thank you.  Also, if any of you are going to NET Patient Conference Patient Conference at the Queen Elizabeth Hospital in Birmingham on the 23rd May please say hello😃

Latest update on the blue tits to it that we have 8 healthy chicks, that are growing fast. We should see them start to open their eyes in the next few days, and be ready to fledge the week after. It is great seeing them develop so quickly, and how instinct on what they need to do to thrive kick in from the start. Both parents are doing an excellent job keeping them fed and clean. This is a link to a video from a few days ago and I hope to post another one in my next blog too.

I’m not afraid of dying, it’s time I’m afraid of…” Interstellar 2014

4 thoughts on “Getting on With It

  1. I always enjoy reading your blog, but especially so this time with your mention of Lyn Wilson! Lyn and I had our surgeries on the same day, at the same time…… but I was 6 hours later in Denver, CO, USA. We have struck up a most enjoyable friendship via this dreadful disease. I consider her to be one of my silver linings along our journey! Thanks again for a delightful visit . Wishing you continued successes along your journey

    Liked by 1 person

    1. Thank you Anne, I am glad you like my blog and I hope you are recovering well from your surgery. Lyn is such a lovely lady, this disease, horrible as it is, has helped me make me a lot of new friends xx


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