Hospital

That's not really a title more of a location. I'm sat in the waiting room in the phlebotomy clinic, not for me this time but Bex needs twice weekly blood tests.

She came home from hospital on Tuesday after a meeting with the Mental Health team, they were encouraged by how well she had done over the five days. She put on nearly a kilo and managed to cope with the ' alien' environment, ironically one of the biggest struggles was not with the eating regime but the other patients on the ward. Sadly two ladies with dementia were very challenging .

The team felt that the best course of action for Bex was structured, observed meal times, but that she could be at home and just come in three times a day.

Firstly they are concentrating on improving and adding to her diet, eventually all the other anxieties and concerns will be dealt with, but everything is done in stages.

We will be involved in weekly family meetings, helpful to all of us, as none of us have had any real experience with any of this, but thankfully we are all supporting each other.

I'm now siting outside the 'home' in town where Becky has her meals-she has to be here for around an hour for breakfast, lunch and supper, and has been told that as well as absolutely no exercise, it's best not to drive either.

So far her routine seems to be eat, sleep, repeat.

I ( and a growing team of helpers) are doing the running around, dog walking, lifts, food shopping for her and us etc.

She is finding it incredibly hard, both physically and mentally, her body is trying its best to adjust to dealing with far more food than it has done in the last ten years and that's tough.

We all know ( her included) that at last she is getting the help she needs and it's all for the greater good, but that doesn't help the nausea and stomach cramps.

Do not fear though as the flugelhorn, cello playing Calvary in the shape of my sister is arriving tomorrow. She has, I am well informed, a large Mary Poppins bag full of useful things.

All her gardening tools so she can prune, weed and use my new lawn mower..... Yes I have an early Christmas present from my father in law, he heard my cursing whilst using the toy one a few weeks ago and dragged Jack and Steph to a well known hardware store that does 10% discount for the elderly ( he is a Jersey boy) and bought one.

Alas too late he realised he'd been tricked into buying the pair of them lunch too, but as they they have his best interests at heart they used the establishment on the pier at Rozel, so he had some pension money left over.

We won't get much cash out of my sister, she's married to a northerner. They have it tough up there, I told her to bring her swimsuit as the sea is positively balmy, although the endless list of jobs I have lined up for her gives her little time for pleasure activities. ( not that swimming in the sea at this time of year is pleasurable, well only for AH)

I haven't made a Christmas cake yet, so I hope she's bought her chefs hat, plus I've especially left three weeks of ironing , two weeks of washing and the kitchen tiles to scrub.

Shame she's only here until Wednesday .

Now a short piece of info about me. The same day we had a meeting with the MH team at the hospital about Bex, I had a meeting with my consultant for about thirty minutes and then my oncologist.

The most recent CT scan shows that the disease has progressed, and I now have tumours in my chest cavity ( not my lungs thankfully). If we do nothing it's only going to get a whole lot worse.

They spoke about me at great lengths in the MDT meeting, and decided that the ONLY option I have is to go down the chemo route.

This is why I met up with NB the oncologist - we spent about an hour with him ( thanks SW for being there) and ran through what is likely to happen .

On the 29th I have my pre chemo bloods taken and a 'chat', the side effects have been explained , thinning hair, loss of some high notes in hearing, tiredness , fatigue, nausea, neuropathy etc etc.

He feels I will respond well to this drug as I have in the past, the HUGE downside is my suppressed bone marrow, this could give me real trouble as it's already low to start with, and is only going to get knocked down further.

We are starting with the lowest dose possible, the idea being to have it weekly ( it'll take four to five hours to administer and I'm sure I will be closely monitored ) .

Am I scared? You bet I am, I've been on thin ice for a while, and now I feel like I'm on the slippery slope, but listen....... I don't hear any fat lady singing so it's not over yet!


Must just mention when Bex and I left the hospital last week, there was a lot of stuff to pack up, it's amazing what you can accumulate in a short space of time. I had a very small bright red 'wheelie' case as well as lots of carrier bags. The case is quite old and had been used in the young farmers concert a few years back, plus Dan had recently borrowed it for someone.

Unbeknown to me the wheel was loose, a third of the way down the hospital corridor, after it left a long black mark , it fell off.
This left me looking like a "Mr Bean" as I dragged the semi broken case making an unearthly noise the rest of the way past the bay's, into the lift and out of the hospital , very embarrassing but quite funny too.

Lastly, thanks for the cards/ flowers/ and get well wishes for Bex, we are at last to coin my husbands phrase "moving forward". :-)







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Saturday? Sometime in November?

Life's all a bit of a blur, days, times, months are all merging into a swirling maelstrom of confusion.

This blog post is not really about me but our daughter, and for those of my friends and colleagues that don't have FaceBook, a brief update.

Our daughter, Bex, suffers from anxiety issues, and has done for many, many years, over the last few years these have become more pronounced, she also has an eating disorder, again, something she has had for over ten years.

None of these conditions have been helped by my own illness, and as we are very close the impact on her has been huge.

I do not want to write great reams on her past medical history, as that is now behind us, but finally due to her amazing brothers she is now getting the help she needs.

The boys felt that they could not sit back and let their sister fade away before their eyes, and so working together they collated a profile of her personality and concerns, and presented it to her doctor.

All four of them went to the surgery and talked through the family's situation, fortunately the doctor realised the very serious concerns the boys had for their sister and arranged an appointment with the Mental Health team over here.

Bex understands that in order to get her life on track she needs help and support from lots of people, she has tried repeatedly to help herself but always stumbles at the first hurdle.

It is only with a professional team that will work on all areas of her life that she knows will help her make a full recovery.

This will not be easy, we all know that, and it will take all our love and support to help her through.

We also realise there is no 'quick fix' to this problem, and the road ahead will be long and rocky.

Bex is being so incredibly brave and positive, and we are so proud of her, she is strong enough to take on this challenge and win.

All this has happened very suddenly this week, and so far we are only on day two, but I felt I had to put 'pen to paper', partly for me to make sense of it all, but partly to let folks know that I really am, and for the foreseeable future taking "one day at a time".

Thank you x

Wednesday 15th November

Honestly you let your guard down for a few minutes and your whole world goes topsy turvy.

One minute you think you're recovering from a chest/sinus infection the next you are booked in for major investigative tests!

Let me explain, I went into hospital for the chest scan on Friday, didnt take long and was fine. My lovely, lovely consultant was in situ and had a free minute so we looked at results. She compared them to previous CT i had in September. I seem to still have inflammation at top of left lung ( near radiotherapy site, and also mid right lung (?).

They had originally put this down to radiation damage. KG took a full blood count from me and also being concerned about my leg pain felt that an ultrasound to check there was no blood clot was urgently needed. Fortunately no clot was found, although obvious inflamed lymph nodes.

Later that evening KG text to say my Haemoglobin level was 9.3, this would explain the tiredness and breathlessness, plus i guess what ever was happening in my lungs?!

The weekend was pretty rubbish, not helped by the weather, but I was wrecked. Did a lot of resting on the sofa but felt no better for it, and was really light headed on Sunday.

Not able to get/do any exercise, not feeling very well, scared because even walking/talking was a bit of struggle and all of that did nothing for my mental health either.

However Monday morning I felt much brighter, and meeting with friends was a tonic I needed.

Tuesday I went to a yoga class and managed not to faint......bonus!!!

Also went to support my netball team, that was exhausting! I'd never make a coach far too excitable/shouty/anxious! Shame we lost by three goals, but the team played very well.

Today I was so pleased to be able to play some racquetball, its such a good sport, and of course the folks are so lovely, I just pretended I couldn't breathe and they gave me easy shots....


Straight from there I went to the hospital for a very detailed comprehensive CT scan, instead of just scanning my abdomen I had an all over body scan, well nearly, don't think the scanner was quite long enough to do  from the knees down!

I don't know why I keep adding exclamation marks to the end of my sentences, they make it look like it's all a bit of a jolly, and actually it really isnt.

Although I am finishing on a reasonably upbeat note, my marvellous consultant has persuaded the radiologist to 'read' todays scan, and it seems there are only subtle differences, this is better news than I hoped, but no doubt more details in a few days.

Apparently my attempt at putting the link for  Stephs page on here didnt work too well, lets try again.

https://www.justgiving.com/fundraising/stephanie-egre

PS, the dog is recovering well, but it will take a few months to totally heal.

Thursday 9th November

This day five years ago Dan had his graduation in Winchester.... I'd had my first operation in March 2012 and was trying to finish my cycles of chemo, my hair had just started to grow back, as the photos show. It was a happy day, and we were all proud to be there, grandparents included.

Its been quite an eventful few days following on from the fantastic holiday ( seems like a distant memory). Hubby has ended up with a stinky cold, which fortunately his immune system seems to be tackling better than mine ever does.

We've started fundraising for my future daughter-in-law who has managed to secure a place with the UK charity Ovacome and is running in the London Marathon next year. She has to raise at least £2,000 just for starters.

Since my chat with the Marsden I have had nothing but pain from my leg! I think thats somebodys "law". I have at least stopped coughing, but my cardio has only marginally improved. This is worrying, but I do have a chest scan booked for tomorrow afternoon.

We've been to the hospital already this week, one of the family needed a colonoscopy, and as i said to the nurse in all seriousness, "we do need to get to the bottom of this".
I know, I know.

Just as bad as saying my leg is killing me, which actually it may well be, but that's 'black humour' for you.

Talking of humour, I had to take Beanie to the vet this week to spend her Christmas present money on getting her paw pad stitched. No idea how she cut it, but she was very well behaved, that is until she got home, heard her sister going out for a walk and then flew out of the garden and down the meadow trailing a chicken printed crepe bandage and cotton wool behind her.

Back to the vet for another strapping, lasted another 12 hours before it too was hanging off. We decided we would improvise and found some crepe bandage in the cupboard and Dan used his expert first aid skills to cover her paw.

While I was out they had to walk the girls, and decided in their wisdom that they needed to keep the paw dry, so wrapped it in two clean dog poo bags, and a small sandwich bag tied on with string.

They forgot to take any leads and as they had to walk back along the lane they needed one and so  they had to improvise, which meant tying a strip of black silage plastic on Beanie's collar.
You can just imagine what they must have looked like. My poor dog. 

If you're interested in Steph's story and are not on FB, look at the link below.

https://www.justgiving.com/fundraising/stephanie-egre

Wednesday 1st November

First day of the month, first new blog post on my 'new' second hand laptop, first day in about a month I'm NOT coughing!

Thanks to Hospice today I had an amazing relaxation complimentary treatment today, it was wonderful and I felt very good after it, so good in fact I managed to cut the grass when I got home.

Thanks NC for the amusing card with the iceberg and lawnmower, I was smiling about that when I was forcing the toy mower through the knee high 'lawn'.

I had yet another visit to my doctor on Monday, really just to update him on my growing medical history, but also as I still felt bad. However, I'm feeling a bit stronger and fitter today, so despite being issued with yet another course of antibiotics I've decided not to take them!

He also booked me for a chest scan, I'll have to see about that one, no date as yet.

I spoke to the Marsden yesterday and left a message, a doctor called me back today and we chatted about how I've been over the last two weeks.

I said although my groin/leg pain niggled on and off I really only had one bad spell with it during the last fortnight, and I didn't feel it warranted any treatment as such yet.

I sighted a few reasons why we should hold fire with the radiotherapy (excuse the pun).

#1 I've had two bouts of radiotherapy in the last 12 months.
#2 I'm only just recovering from a nasty infection.
#3 Unless I start fairly soon I'll be into Christmas, and the thought of spending the next four/five weeks in London is not appealing.
#4 I want to give tamoxifen a chance to work, I've only been on it three weeks, so wont know if it's being effective until end of December.


She said she'd discuss with Dr AG and get back to me, which she did this afternoon. They seem to think that waiting is fine, and they have booked me into the Marsden for scan and clinic appointment first week of January, unless things drastically change that's the plan so far.


Ok, so thats the information side of the blog...

The rest is going to be HOLIDAY PICS !!!!

Hippos!

Table Mountain

 View from rooftop terrace at hotel in Cape Town.

Boulders Beach.....

Enough!!