Sue

There is no easy way to put this.....

Sue passed away earlier this morning in the Beacon Centre, Taunton

Her sister Rachel was with her as she peacefully slipped into the next world and the loving arms of those members of her family who had gone before her

As you would expect her room has had a procession of visitors, young and not so young over this week and the staff have been magnificent, showing compassion for both Sue and all around her in bucketloads

Now she is free of all the limitations of her condition to be Sue again

The sun ought to get it's act together today as there is one new star up there shining so brightly we will all need our sunglasses

God bless you Sue xxx

Latest on Sue

As she told you herself Sue had the second lot of ascites fluid drained a couple of weeks ago

Unfortunately after she returned from hospital on the Wednesday she started to become quite unwell - lots of vomiting which the GP seemed unable to control with anti-emetics

Eventually we managed to persuade her, much against her better judgement, to go to A and E on the Sunday where she was kept in

To cut a long story short the vomiting was as a result of her kidney stent failing and subsequent high levels of calcium in her blood

Eventually she was moved to the Beacon ward last Tuesday and since then she has deteriorated gradually as her kidneys and liver functions have reduced

Yesterday her oncologist told her family that there was little else they could do except palliative care

She is still on the Beacon ward and is being looked after by their wonderful staff

I have seen her this evening and she is comfortable but I am unsure if she is aware who is around her.  As you would expect she has had lots of visitors.  The staff feel that she will not be with us for that much longer but it is impossible to quantify this as she is still relatively young and was quite fit before this latest episode so it could be hours or several days

Before she drifted into this gentle state of resting and sleeping we have had some lovely 'Sue' moments and she has also tried to 'escape' several times much to the consternation of the staff

So please join us in smiling at these thoughts and hold her in your heart for as long as she's still with us

Update

We realise a lot of you will have been wondering how Sue is doing so this is a very quick update

She is still in hospital and is really pretty poorly

We have made sure that we have passed all of your messages of love and support onto her

We will update the blog as soon as we are able to

Thanks to everyone for their good wishes

Anne and Lynne xxx

Breaking News......

As Sue is currently in hospital here is a message from her friend Lynne:

 

“Well as some of you already know Sue has been re-admitted to Musgrove Park Hospital.

Yesterday afternoon, after 4 days of struggling to keep fluids down and getting very dehydrated, we as a group of friends, talked Sue into thinking it was the best decision to go and get everything checked out.

After a very uncomfortable 4 hours in A&E, Sue was reluctantly admitted to her nemesis ward - Medical Assessment Unit.  Unfortunately MAU is a very busy ward, very noisy and not a good place to be for the sleep deprived.

Blood tests confirmed the dehydration and also a high blood calcium which needed to be treated urgently.  The high calcium levels were causing the nausea and vomiting as well as making Sue feel very weak and quite confused.  Also the dryness in the mouth had brought on another bout of oral thrush that was picked up by the consultant who came to see her on MAU.

After much persistence from Sue and an emotional phone call, the staff on MAU managed to get Sue moved to Ward 9 which specialises in treating oncology and haematology patients, and although she wasn't treated to the single (party) room like her last visit to that ward it is certainly much quieter than MAU.

Sue said she had a terrible night with lots of pains in her arms but that was also due to the calcium levels. 

The plan of action for today was to rehydrate as far as possible without causing the oedema to return.  This would hopefully bring down the calcium levels and improve all symptoms.  During the afternoon Sue had an ultrasound scan of her kidneys and abdomen just to see that the stents fitted at Christmas were working properly.

Good news is that following rehydration Sue has become more coherent and less confused and is looking a bit brighter.  I've just heard she's been moved to the Beacon Inpatient Ward (specialist oncology unit) which will please her no end.

The plan when Sue is discharged is to get a sensible care package organised which will give Sue some independence and allow her to stay at home as much as possible and help Holly with the caring whilst making sure Sue is looked after properly.”

Reports confirmed some good and not so good news...

The good news is the largest tumours in my liver have reduced in size. There appears to be moderate amount of fluid in my left kidney, which we didn't discuss so will pick that up on my next appointment.  Overall statement - Stable and No significant change.

Not so good news is the Acities which I was expecting "suggests progressive peritoneal disease".    I know the fluid was increasing because although I haven't put on any weight, the increasing size of my belly despite using natural diuretics, is quite obvious.  

More not so good news was that my liver functions have deteriorated again.

Moving forward the plan is - Not to take any Mistletoe Therapy, continue with my Chlorella, Spirulina and Astragalus (herbal remedies) and check my bloods in 3 weeks time. Hopefully the improvement trend will be reinstated and I can start Chemo.  Despite the tumours in my liver not increasing in size, chemo is needed to reduce the Acities activity.  Arrangements are in place to have the Acities drained again and send off a sample of fluid for testing. 

Despite the mixed bag here I feel pretty confident that this is all manageable.  Even a few cycles of Capcitabin doesn't seem too bad.   Gives me a chance to source some more herbal remedies :-)

Next appointment is 4th June which will fly by as the last 3 weeks have done. I hope we can have some more sun in the meantime so we can all top up on some much needed Vitamin D! xx