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

Bloods still improving Whoop Whoop !!

My Bilirubin has dropped 4 points to 20 and is just 3 points off being back in range. The Albumin has increased by 2 and is 2 points off being back in range and the Alkaline Phosphatase  has dropped by 33 and is 119 points off being back in range.  The interesting thing is that this is all being done without any conventional or Homeopathic drugs :-)
 
My Potassium level is back in range for the first time since 11th March.  Again no Drugs, increased it with a combination of foods and drinks  rich in Potassium and Magnesium.
 
Annoyingly the Acities has returned.  Initially I was putting on 1lb a day which was worrying as I thought I would be back in hospital by now with another drain or even having a permanent one fitted.  However I have managed to halt the increase by eating and drinking natural diuretics and have even lost 1lb in weight.  I am able to cope with the symptoms so far and hoping that I can reduce the fluid collection naturally to avoid another drain.
 
Discussing the cause of the Acities my oncologist advised it is a symptom of active cancer cells in the  Peritoneal cavity where the Liver sits in. These cancer cells are unlikely to show up on a CT Scan as they are tiny, however the chemotherapy, should it work, will also reduce the fluid by killing off the cancer cells. 

My CT Scan is booked for the 3rd May and my next Oncology appointment is the 14th May where I will have the results.  Meanwhile I am going to start my Homeopathy medicines and see what the impact of them will be on my bloods and Acities :-) 
All in all I feel very positive!!

Quick update - A fantastic week all round...

I have had my Acities dealt with last Thursday.  Over 5.5 litres of  fluid drained loosing over a stone in weight.  I can breath easier and my mobility has improved and I feel better than I have in a long time.  Just getting my appetite back and build up my strength . 

I had clinic today which delivered more good news as my liver functions have all improved !!!  Despite having Local Anesthetic, pain killers and anti sickness drugs when I had my Acities fluid drained and having a 24 hour vomiting bug.  We agreed that my body has just had so much to deal with and is now starting to get back to normal.

This means I am going to give Capecitabine another go in 2 weeks time starting with lower dosage to see what the side effects are going to be like.  The success of this will be measured by a having a CT Scan when I start and one more probably after 3 months like last time to look for reduction in the tumours. Also I will have blood tests every 3 weeks.  My oncologist did reiterate that just because it worked a year ago doesn't always mean that it will work again and I assured her I understand that risk but I am going to combine this with the homeopathy drugs as well.  Keeping my fingers and toes crossed...

I am seeing a light and normality at the end of the tunnel and feel I can even start thinking about escaping back to work xx.

Another positive difference in a week!

I had correctly guessed my bloods would have improved as 2 of the symptoms have improved and I felt my energy level increase. Shame you cannot prescribe weekends away with friends!
My kidney functions are all normal and my LFTs have shown improvement in 3 with the 4th moving by 1 point in the wrong direction.  My potassium level still dropping along with my HB.  During the most positive Oncology meeting I have had all year, the following plan has been agreed.
1. A referral to Liver specialist to understand why my Liver functions have deteriorate as the 2 largest tumours would not be the cause.  Liver being such a large organ should be able to cope with them.
2.  Stop all medicines for 2 weeks to see if there is even more improvement.  I have agreed to stop the Homeopathy and herbs and keep a foood diary!  We looked at the LFTs over the last 2 years and can see the deterioration started mid 2011.  Yes I had all the graphs with me and I will have a look and see what I was taking.
3. A referral to have the fluid that has collected in my belly drained.  This will improve mobility and appetite. Dr examined me and confirmed I have Ascities.  I just thought it was the left over fluid from being drip fed it me when I was in hospital.  I had stopped taking the water tablets last week as Dr called to say my potassium was low and  I know they impact the potassium levels.
4.  Review bloods in a fortnights time and if there is sufficient improvement in the Liver functions then I can start Capecetabin.  I may need another blood transfusion if the HB levels don't improve.

What a huge difference a different oncologist makes.  Thinking outside the box, being spoken to as a person not a number.  I was even asked how my daughter was coping with everything.  We discussed possible causes of the reduced liver functions and the last scan results.  What is involved with the Acities and what happens to get it drained.  It involves local anethestetic and a night in hospital.  Umm drugs that will impact my liver functions....
I am still angry at last weeks episode with Dr D&G and her advise has been contradicted today by someone who I know and trust from being my oncologist in 2009.

Heres to more Orange Juice, Fruit Teas and fun xx

An eventful afternoon in Clinic!!!

Arrived at the Beacon Centre had bloods taken and waited to be called in.  Thankfully time flew as Debbs was with me and before we knew we were all sat in the consultant room.  I was asked how I'd been and I told them my concerns.  Then the consultant, using last weeks blood test results, continued including giving me another less toxic chemo option.  I was then asked to come back in two weeks so that a treatment plan can be agreed and asked if I wanted a referral to our local hospice for symptom management.  This all based on a week old blood tests.  I confirmed I was not leaving without my test results which was discouraged but I stood my ground and went to the waiting room.   Then I realised I didn't know what to do as the Consultant and nurse would be seeing the next patient.  Bordering hysterical I called my GP and the duty Dr agreed to look out for them and ring me.  This gave me chance to calm down and by that time I had found out the results were in and asked reception to get a Dr to print them out.

Lynne arrived at this point and tried to establish what had happened.  The nurse then came out with the results and it painted a different picture to last weeks!!!!  Still out of range but improvement in 3 out of the 4 LFTs including the Bilirubin.  Lynne took charge and asked to continue talking to the nurse and got her to get us a room.  She then cleared up all the issues including a change in my consultant, brought the next appt forward by a week, I agreed to the hospice referral for symptom management.  Result.  Thanks Lynne I feel extremely lucky.  I feel much calmer now and it was certainly the right thing to do.  The consultation should have never taken place without the current blood tests.  Not that much has changed but it brought positivity to the table.

Feeling exhausted now and Alice is cooking me chili for dinner so signing off....

Am home at last

and resting. Just got to keep an eye on the fluid retention however it is lovely being home.  My hair is now all shaved off thank you Anne,  and the search for the hats and scarves back on.  Trust this to happen when it turns cold and I gave my beanie hats way. Never mind opportunity to buy more and it wont be needed for long.

Pre - assessment next Tuesday but till then rest and recovery and think about the questions I have for treatment options open to me. 

Holly on school trip til Friday so it is feet up with some exercise... uummm feel an online shop happening xxx

It gets better

Well catheter came out today and I went for a short walk afterwards to the cash point and Lesley P brought me back in the wheel chair but is was a good start thank you lovely!!!!
My creatinine levels have come down by another 20 points.  I am carrying fluid but have turned down the magic pills as I don't want this to affect my kidney function but will have to monitor it.  I hope to be discharged tomorrow with 7days of antibiotics as a small UTI infection is being checked out and I'm happy with that.  I also have to do something with my hair as it has fallen out again so I will have to grab the scarfs and hats out and hope to sport a spiky look before the Judi Dench look comes back :-)

Options for the next steps are being discussed and I have lots of options to explore and will post that when I have made them.  The good news for now is that recovery is good and going home tomorrow.

A huge thank you to everyone including Thandi.  As you know I have continued with plans as a well person but having plan b's as well.  This weekend Holly and I were going to Bournemouth to see Olly Murs at the Bournemouth International Centre and stay the weekend in a lovely 4 star hotel booked through Laterooms.  I have to say they have all been brilliant. With the bookings being the last thing on my mind except ensure the Olly Tickets went to a good home with as little fuss as possible.  The hotel phoned Friday to check what my arrival time was and I acknowledged they were my next call and apologised but would hope to transfer to another day but not in a position to discuss it at moment and explained what happened.  They sorted every thing out and got in touch with Laterooms who have confirmed today they are going to let me have my booking at another date to suit me without extra charge for the same hotel.  Wonderful news and I am so grateful for the stress took away from me by the hotel.  Big brownie points to both of them.  Then the BIC came up trumps as well.  My lovely friends Elaine and Tanita were both free and able to go to the concert and I was able to let them have the tickets and the BIC were very helpful and made this secure but a painless exercise.  I am so glad you both enjoyed the evening and the tickets went to a good home.  I'll get to see him at some point :-(
Thats all for now.  All good and going in the right direction.  Going home tomorrow with managable side effects and rest.  Thanks for everyones thoughts and wishes it all helps xxxx

Fab test results are in which have made my day...

Restful night, nurse came in. And informed me of results and Shushhh.
LFTs -Bilirubin shot up to from to 34 to 127 now down to 80 need to get to 17.
Kidneys - just waiting for creatinine levels to return from down to 184 and need to be under 120.
Potassium and Magnesium bank in range.
CA 153 tumour markers are now down to 122.6 need to get to 34.
My WBC is now back in range too so no longer neutrophenic
Although i am loosing fluid at a better rate, catheter is staying to monitor my kidney functions in particular my creatinine level.
My leg swelling will improve with rest and better urination.
Overall Result - All good news, functions improving in the right direction, symptoms improving and relaxing will also help. Will be having another blood test shortly.  Just waiting for a vein to come out to play

Thank you everyone for your messages of support and good wishes. Apologies for no personal replies but as you can  imagine I have been inundated however it all helps.  Holly's care is all sorted for next week keeping up normality as much as possible which is what she wants.  I feel more informed therefore more in control.  We cannot talk about next options until  the kidneys are working properly which is what is being closely monitored. 
I am being moved to the Beacon centre this afternoon as I come under Oncology.  Nothing to do with the private party I had last night.....
Lots of love and best wishes to you with a huge thank you xxxx

A quick update for you

After Saturday and Sunday spent mostly on the sofa, in a lot of pain , attempt at work on Tuesday but leaving work early and the start of being sick on Wednesday phoned duty GP and the Beacon centre on Wednesday it was decided with dehydration and white blood count on Thursday it was deemed necessary to admit me to Hospital on Thursday.
I was hooked up to antibiotics and cayline straightaway further tests were completed. I was Neutropenic - low white blood count and dehydrated.  Tests I conformed I had no infection  but kept overnight for the other.  I am not passing out enough water water now either.

I am needed to stay in to rehydrate me and increase my white blood count and reduce the jaundice which accompanies all that.
There are other options to consider as well with the impact the chemo has had on me sand I will update my blog when I understand them as my liver functions, surprise surprise,have been impaired which will be prioritised and disscussed.

Plan B for Holly is in action. We have all had a bit of a shock. However I am in the right place and should be hear for about 5 days.

Thanks for all the good wishes but this is all for nowxxxx

A big Whoop Whoop and another winge...

However the Whoop Whoop is fantastic!  This has made up for the 3 attempts to get canulated on Friday for my blood transfusion and that is my blood results from Monday before I started chemo, showed a good improvement in the the right direction and my LFTs and my Tumour Marker.  It is just my Bilirubin level hasn't changed which I need to reduce.  I didn't care, I was ecstatic as you can imagine as this has given me the confidence in the homeopathy drugs I have been prescribed and ones I have self prescribed.  Big Whoop Whoop!!!  Just need to bring down my Blirubin and have been shopping for Echinacea tea, beetroot juice and already using honey and lemon.  The problem I face is having enough time to drink it!!

The down side is the side effects of Monday's chemo has kicked in starting with mouth ulcers.  A quick scour of the intranet showed Coconut oil and Chamomile will help.  Appetite gone and reminds me of how I felt in 2009 when I had 8 cycles.  Have got in snacks for energy and more Complan.

The whoop whoop more then makes up for this (I am still trying to convince myself) as my confidence is booming particularly after the last 2 weeks..  I have put a call into the Penny Brhon centre to speak to a dietitian to see what else they can suggest to bring my Bilirubin levels down.  Answers on a post card please .....

 

1st round of chemo started today

which nearly never happened as I hadnt' picked up a voice message on my land line Thursday until Saturday. There had been no follow up call on my mobile either.  With last Monday's Oncology appointment leaving me feel morose and angry and then also on Saturday,  I had a copy letter of one sent to my G.P. with inaccurate information in it didn't cheer me up!  The impromptu late lunch on Holly and I had on Saturday with Lynne, James, Amy, Libby, Ali and Harry did though. :-)

A quick phone call this morning confirmed the message I had picked up was for my Chemotherapy appointment and they were going to offer me the 9am slot today!  As I was working on site today I was able to take it and it was still available - result!  The Cannula didn't hurt much and the nurse took blood required for a bench mark test from it was well - another result!  The actual drug infusion only takes 5 minutes but it was all the paperwork and waiting that took the time as this was my first course of the drug.   Eribulin will be given to me on day 1 and 8 of a 21 day cycle and I am earmarked for 3 cycles before reassessing with another CT scan to see if this is working.

My bloods came back with my LFTs showing some improvement, 1 test by a third , 2nd by half  but no movement on my Bilirubin levels.  My Hb is now below 10 so I have been booked in for a blood transfusion on Friday and my potassium level  is low - yep eat more banana's.

Mixed bag really, feeling less angry after firing off a couple of emails. So far no side effects but have to take steroids for 2 days.  Not sure what to do with the homeopathic meds.  I get the " lets keep things simple for my liver"  but no one has confirmed any contra interactions and I really want to have a natural approach to help remove toxins from my body and manage the side effects.

March is almost here and have some lovely weekends lined up creating more lovely memories :-) Bring it all on !!!

Well that went better than I thought...

I had prepared myself for the worst so I came out feeling quite chipper.  My kidney functions are all back in range and the stents are working as there is no fluid collection. My liver functions are still out of range and creeping in the wrong direction along with my Tumour markers.  However they are only creeping.  There is mild enlargement of  the lesions in my Liver and new ones noted, since my December scan.

So my options are, Chemo, Letrozel or stick with the Homeopathy treatment.  I was chuffed they were offering me chemo,  not convinced about Letrozel as none of the other Aromatase Inhibitor's had worked but my new Oncologist pointed out that I had taken a months supply since my last scan and the progression has been mild suggesting that this was still a viable option.  I would feel more confident about taking homeopathy treatment if I was being treated locally but happy to once we have reversed the cancer growth. The Chemo they want me to try is Eribulin and I need to do more research on this. 
I know I will go for the Chemo option whilst I am well enough to handle it and it is still an option. I have been told to go away and think about it for a week then I will let my Oncologist my decision.

On another bright note we have finalised the Charity Ball account and sent it off to the Penny Brohn Centre who have issued the certificate as below.  Thank you everyone that turned up to make this the success that it was as this would not have happened without you or without the phenomenal committee for making it happen.  

Have a good weekend everyone xxx


 

Glad January is over

What a rubbish month it's been for people I know of and or care about loosing their fight with cancer.  I have to mention the lovely Timms family from Brackley.  We were so relieved the snow stopped allowing Holly and I to be with you all for the day.  It was a lovely, wonderful funeral and wake and may Margaret RIP but alive in our memories.

As if I needed any more reminding about how fickle cancer can be, ignoring my swelling face, weight gain and generally feeling worse then I had for a while,  I was finally persuaded last week to get to the Dr's.  Within 3 hours and after a couple of phone calls I was admitted to MAU and have got say the experience there was improved since my last visit in 2009.  I did  laugh when the Dr phoned me at work to say she had been been in touch with the Oncology team and then  "Your not going to like this but  ..."

Within hour and half,  all the tests, examinations and xrays and been done it was a case of waiting for the results (This is when I wish I had shaved my legs ).  The Secondary Breast Care nurse came up after clinic and said I was not to leave until a CT scan and MRI had taken place.  When the Dr and consultant  went through the results with me, we agreed that realistically I was not going to get scanned as it was gone 4pm at this time and that they would get them  booked for tomorrow.  This pleased me as I had no intention of staying overnight, however the CT scan is booked for next Tuesday morning with an appointment with oncology in the afternoon. 

Turns out that my liver functions, despite the improvement a fortnight before, has deteriorated and  I am passing protein in my urine.  It was quite frightening and had to get the plan b's into action for Holly if I was kept in.  For at least 1 minute my mind went to that dark place with the words that were being thrown about and the speed it all happened at.  Thankfully the clinical examinations have ruled out the dark places I went to however I will wait for the CT scan to be absolutley certain.  The water tablets have worked and I have lost the weight I had gained already and my face isn't sporting the steriod look.  Something else for me to research...

I managed to get to my Homoeopathic appointment this week as the last one was thwarted by the snow.  The Dr is pleased with how I have been with the Iscador  (mistletoe), Carcinosin and Ignatia and has prescribed 2 more for me to help with water retention, nausea and leg cramps and will put them on here when I have found some useful resource.  In addition to that my friend Tracey has pointed me in the direction of Chlorella which I will have to get myself.  He pointed out about my negative attitude with regards to next weeks scan as I told him I am expecting growth and spread as I am  not taking anything heavy duty to put the brakes on the cancer cells so to speak.  I only started the Homoeopathy medicines after Christmas because of my minor op.  Personally I think I am being realistic and expect to start a course of chemo, which isn't going to be a problem if my body reacts like it did last year when I went on it. 

Off to shave my legs as you never know.....