Monday, 28 February 2011

2 little milestones completed today

1st one was I have said goodbye to my VAC therapy treatment.  I have lost my little dyson coffee filter after 3 weeks. Feels weird not to be attached to it. My wound is great but still needs dressings but  I'm only loosing about 5 mml of Exudate from my wound and my dressings can be changed by the GP.  Looking forward to a good night sleep tonight!
2nd one was after 7 weeks of not driving I took a short drive in my car.  That felt weird too.  Need to take that easy and use only for emergencies me thinks but still feeling like a happy positive bunny :-)

Thursday, 24 February 2011

Seeing a light at the end of the tunnel!

My wound is making huge progress on the healing front after nearly 3 weeks of VAC therapy.
Sadly, last week was a complete nightmare and I thoroughly wore myself out .  Firstly thank you to Anne and Nige for getting me to Bristol for my Oncologist appt. However after waiting for one and half hours to be seen only to be told the results have not yet been received.  I wont rant on here but needless to say I was not a happy bunny.  Then I had to fight to get Taunton to carry out a 10 minute procedure to drain the seroma from my back.  I had checked, but Bristol couldn't do this when I was up there on Tuesday.  Even after examining me, talking to the team at Bristol who were ok about them carrying it out, they refused to do this and eventually after lots of phone calls here there, everywhere and with almost everyone, they conceded providing I got a referral.  This was done and they saw me last Friday but looks like I've picked up another infection so on more antibiotics.
Monday was the start of my chilaxing week.  Thanks to John and Sarah, my neighbours who insisted that they take us up to my friend Karen in North Devon not just the train station.  I so want to move there! The hospitality was fantastic THANK YOU KAREN !  Caught up with Clare, Leia, Hope Luke and Faye.  Yesterday Teri collected Holly and myself and we took TJ for a walk along Saunton Sands which blew away the cobwebs.  I completely zoned out for a few days.  Holly has chilled out too watching Friends back to back, jacuzi's, pizza and chips!!  What more could she ask for ?
To top off a truly relaxing time, the oncologist from Bristol phoned me yesterday and asked if it was ok to discuss the results he had received on Cruella's sister.  After my confirmation he advised that this tumour is made up of Oestrogen  and with hormone positive receptors (Exact make as Cruella).  With my sentinel node biopsy being clear it is very unlikely that I would be referred for Chemotherapy treatment.  That's all I wanted to hear.  I have loads of questions but will keep them for my oncologist appt on the 8th March in Taunton.  I know there will be possibility of Radiotherapy and I'm sure there will be drugs but as this tumour grew whilst on Tamoxifen not sure which ones.
So feeling relaxed for a change but not popping the champagne just yet....

Monday, 7 February 2011

VAC Therapy now installed

and working.   This week is going to be so much better then last week. The District nurse and the Nurse Specialist turned up around 10am.  Putting on the dressing and the training took just over an hour.  I carry the pump and drain canister in a black bag with a detachable shoulder strap. If you want to know more http://www.kci-medical.co.uk/UK-ENG/vactherapy   Fascinating read.  
I just feel so relieved.  Mine will probably be on for more then 5 days and the dressing itself will be changed on Wednesday, Friday and Monday and I empty the canister when necessary. As the pump makes a noise like a coffee filter machine  I don't think I'll go to the pictures this week I may well be asked for a coffee :-)x  

Thursday, 3 February 2011

Quick Update

My referral has  been received at Taunton's Tissue Viability Team.  I had a call this morning to confirm that equipment had been ordered and I would be seen at home on Monday but couldn't advise what time.  I did ask why this was being left till Monday and got told there is little support for this over the weekend. As disappointed as I am  I do understand.  The more expensive dressings will arrive today so hopefully I should only need to change my dressing one a day.  I feel like a huge weight has been lifted off my shoulders
Bristol Breast Care team have also contacted me this morning to see how I am and ensure the referral has got through.  

Wednesday, 2 February 2011

3 Weeks 1 Day post op

and my wound is dripping for England still.  I had a more expensive dressing that Debbs put on for me on Monday which lasted till this morning.  Went to see local nurse who checked wound and changed dressing which leaked before I got home.  No sign of my priority referral to the Tissue Viability team made a week ago.  My Bristol Breast Care nurse is going to chase this up today after clinic and Taunton are on standby as there is nothing they will do until that referral shows up from where ever it is hiding in Bristol.  Didn't appreciate the impact this is all having on my well being till I went 2 days without leaks or dressing change.  Have had to strip the bed this morning and 3rd top change and it is only 10.20am.  Not a great start and as I didn't sleep well last night feel tearful today.


Still have had a better week then last week.  Nige B took me shopping with his mother in law on Saturday.  Sunday,  Ali collected Holly and I and took us back to her house for a lovely Sunday Roast - Thank you it was lovely.  Monday, despite feeling sick and nauseous went for a carvery at the Merry Monk courtesy of Anne - Thank you, I managed to keep down what I ate - Result.  In the afternoon Claire P and baby Olivia came round.  Nothing like a baby to put a smile on your face.  Tuesday Hazel from work came and took me out to the Monkton Garden centre where we spent a fabulous time in the sun with a coffee - Thank you!!  


Holly has been brilliant, and didn't she make me chuckle when she ran out the door this morning when I said my bedding had to be stripped.  Hoping to have a lovely weekend with a trip to the Rock n Gem show (might even be inspired to be creative once the leaking has stopped) followed by a curry Saturday night.


I have had the Oncology appointment through and this is for the 15th Feb not the 8th as told last week.  Hopefully the priority referral which appears to be in the snail post should get things moving tomorrow....

Thursday, 27 January 2011

17 days Post OP

Have had a few dramatics over the last week.  The infection took hold before the antibiotics kicked in.  My wound was leaking heavily and at one point a CSI agent would have looked at home in my bedroom. Huge thanks to my neigbours Debbie and Sara for running me down to the surgery twice, changing my bedding and then taking all my washing away to do.  I put in a call to Bristol who were surprised that a wound site was leaking but said "First thing is not to Panic. You are on antibiotics minimising the risk of infection and just keep changing the dressings"  Well that's all ok then!  Thanks to Claire for doing some shopping, never ever have I bought such a big box of Maltesers for myself but they are doing the job.  And not forgetting the Bebbs with Anne bringing food parcels and getting both Holly and myself round to theirs for dinner. And then there was Jill who took me out for an hour to Asda on Sunday.  I went in one of the electric trolly's and Jill placed in the shopping.
The weekend I was a bit tearful which I think I can allow myself.  I accepted the impact on my recovery this  infection has had. Cancelled plans to visit family and attend a christening this weekend.  Also the harsh reality of my vulnerability felt foremost in my thoughts following the death of one of my fellow bloggers, Daria,  from Secondary Breast Cancer. This reminded me of the banter we had with my brothers David and Colin when they were faced in the same situation which did put a smile on my face for a bit and hoped Daria's family are drawing similar comfort.
Anne took me to the BRI for this weeks appointment. Dr Chaudry (one of the assistant surgeons) decided I needed more antibiotics, took a swab and also wanted Mr Raytor to see the wound.  She also confirmed that an appointment has been made to see the Oncologist on the 8th February to discuss any further treatment plans e.g. Chemo based on the test results.  Well he will be able to answer the majority of my questions not the surgeons.
Mr Raytor examined the wound and explained to me as they had to open up a 5 week old wound and the skin is not healing particularly well hence continued leaking. What they have done is placed a priority referral to the Tissue Viability Team. They will fit a Vacutex dressing on my wound.  This will accelerate capillary action on the wound will draw the infection out, encourage the new cells forward to assist with the skin healing.  Having read a bit on the Vacutex on the net it all makes a lot of sense but I'm sure he mentioned a tiny pump being used as I remember him saying "there will be a small regular vibrating noise" but can't locate relevant info. This is of course dependant on funding.  Anne please feel free to correct me if I have got this wrong.  If I don't hear anything by Friday I will chase this up.  I successfully changed my dressing this morning but should have done it before it started leaking.  I will get the hang of it soon!!

Thursday, 20 January 2011

No Confirmed News however

early indications are that there were multicfocal sites removed  last week same as discovered in December.  All the same, Lobular breast cancer and some non cancerous cells. Unfortunately the full test results from last weeks op didn't make the MDT meeting yesterday so the Oncologist has not reviewed them.
My Consultant surgeon's opinion is that as all the breast tissue has been removed it will be unlikely that I will need Chemotherapy again. Also this would not have developed during the 12 week break I had from taking Tamoxifen in the summer.  Due to the scar damage on the new breast, it is unlikely that Radiotherapy will be recommended.  This is all backed up by the excellent news that the Lymph nodes were clear.  I am so grateful I had my op and they found it early on.


Unfortunately I have also developed an infection on the area of the wound where they had to re cut into the same scar tissue from December's op.  No on a 5 day course of antibiotics to clear that up. Both Drains now removed starting to feel less disabled but still need to rest. 


Maybe next week I can crack open the champagne!!

Monday, 17 January 2011

6 days Post Op - First day home alone

and doing well.  Holly brought up coffee and toasted teacakes for me before taking herself off to school.  I feel nauseous in the morning so the food, coffee, painkillers and more rest helps me feel better. Another hour in bed before empting my drains as I still have 2 in and draining over 100ml between them.  Strip wash before settling in front of T.V for most of the day.  And this is how its going to be for most of this week.


Back to last week, op day, the 2 lady registrar's appeared to rush in whilst I was waking up in recovery to tell me my Sentinel Node Biopsy came back clear :-).  I nearly lifted myself off the bed I was so ecstatic.  Not sure who was more pleased, me or them.  I remember saying "Does that mean no Chemo?" and realised that they cant' answer that at the moment.
I got back to the ward around 6pm with my sick bowl and managed to catch most of it this time but at least didn't splatter anyone else.
Wednesday, once my painkillers kicked in, I started to feel better and getting excited by the indication that I may be able to go home Thursday and when that time I arrived I carried on as I would normally,  forgetting I had just had a major operation and this made me feel sick again, pushed my temperature and blood pressure up.  Rachel knew as soon as she saw me and said "Still want to go the the pub then ? I guess not!"  


James and Lynne are kindly taking to my post- op appointment this Wednesday.  This is when it will be reported back to me the full test results of the tumour they found in December and hopefully my Treatment plan.  A good start is knowing Cruella's sister didn't leave the breast. I'm feeling really lucky :-)

Thursday, 13 January 2011

Away Home

Sue rang me this morning, rather eagerly telling me she could come home today, aim to get there for 12 o’clock and we’ll stop at a pub on the way home. Hmmmmm.

As it turned out, Sue had got a little too excited and enthusiastic sorting her stuff out and packing, she got a bit hot and bothered, so we stayed a while and she had some food and tablets and left at around 2pm.

So, we didn’t stop at the pub or go via the Thatchers Brewery!! And she’s in bed resting hoping to get some good sleep tonight.

Also, had we left the hospital when Lil Miss Eager wanted, she’d have missed the beautiful flower arrangement that had been sent by her work colleagues.

Rachel xx

Tuesday, 11 January 2011

Operation Day

Have spoken to the Staff Nurse and Sue is back on the ward, drips and drains attached.

They’re giving her sips of water to see how it goes, then she’ll have some food later on. Sick bowl is on standby!!

That’s all for now, will let you know more when we know more!!

Rachel xx

Monday, 10 January 2011

Wasn't that bad after all

Day started good.  Got everything ready for tea tonight, wrote down the return train times from Bristol, Anne took me to the station got ticket off I went. 
Then on train I  realised left notebook and appt letter at home with return train times. Got off at wrong bus stop in Bristol but still arrive at the BRI at 11am to find out appointment not till 1:30pm!!  
After a browse and a glass of wine in the pub turned up at correct time and got seen after waiting for 45 minutes.  Then it was just a an injection (no canular), massage injection site for 15 minutes then lie down for some xray's. Wasn't as bad as I thought it would be.
Now I really do have to pack my bag and yes will check letter for tomorrow :-)

Sunday, 9 January 2011

Ready for a day of needles and scans

which is all in aid of  new technology for Sentinel Node Location / Imaging in 2 parts. 
Part 1 Injection and first imaging session lasting approximately 1 hour
Part 2  If necessary (criteria unknown to me ) Imaging about 3 or 4 hours later lasting approximately 1 hour.
One of the injections will be of a slightly radioactive substance.  At some point I will be injected with dye. 
This is to assist  my surgeon on Tuesday, identifying the Primary lymph node gate (my terminology) and remove gates 1 & 2 before continuing with my mastectomy and reconstruction.  The removed sample will be immediately tested in a machine called OSNA (http://www.sysmex-lifescience.com/OSNA-assay-for-lymph-nodes-175-2.html) to see if cancer has travelled out of the breast in the Lymph system.  With the results, a decision can be made during the operation as to whether to continue with a clearance or not  as opposed to doing one straight away as in my last mastectomy in Oct 2009.  Saving my lymph nodes reduces the risk of Lymphedema.  I will be pleasantly surprised if this has stayed inside the breast this time. 
Going to Bristol on the train tomorrow but not sure what time I'm getting back.  My friend and work colleague Alice, is Holly sitting tomorrow night so Holly can stay at home and Rachel will land Tuesday afternoon  for the week to take over.  
Book ready, iPod charged.  Suppose I could pack my bag but not feeling inspired to do much.  

Monday, 3 January 2011

Happy New Year and a funny thought for the day

Thanks everyone for your kind comments via blog, facebook, phone email and cards. They all help. Jo & Jo your card most certainly made me laugh.  I did mention to Holly about going to find a Karaoke bar and she shook her head (in terror I think).  I reminded her when we went to Tenerife February 2005 with Sharon Laura and Matthew when we lived in Brackley and one evening we did end up in a Karaoke bar. My turn arrived and  Robbie Williams' Angels was my choice.  Whilst I was singing my heart out the DJ went over to Sharon and asked her if her mate had a sense of humour and next thing he came out with tissue paper stuffed in his ears and waving a lighter.
New Years eve we went to Worcester to Kerri's house and I was telling them about your card the above story and as we were about to embark on an evening of SingStar and we all burst into the song I will survive by Gloria Gayner.   Thanks Guys xx

Thursday, 30 December 2010

A good positive thought for the day.

Lying in bed this morning thought of another positive to all this.  At least I won't have to have any more mammograms!


I am trying to sort out practical arrangements.  When I get out, my lovely neighbours Sarah and Debb's are going to take turns to help wash me.  I can empty the drains and record the volume.
What is proving difficult is care for Holly when I'm in hospital as Holly doesn't seem to want to discuss her options.  Have now told her she has till Friday to make a decision or I'll make it for her.
The  other issue I have is that on Monday 10th I have to have injections and scans (I'll explain in another post) for most of the day before my op on Tuesday 11th where I have to be on the ward for 7:30am. Now it makes sense to me due to the distance I live from the hospital (1 hours plus drive ) and the time I have to be there the next day, to have a bed from Monday night but have been told this morning that I don't qualify and to look at other alternatives.


I really don't fancy going up to Bristol 2 days on the trot and the 2nd trip being silly o'clock in the morning but currently that's looking like my plan B.

Friday, 24 December 2010

Remembering Absent Friends and Family

A spray of roses just for you, Sprinkled with teardrops instead of dew, And in the middle a Forget-me-not, to let you know we have not Forgot ♥ xxxxx ♥ xxxxx ♥


A mulled cider in the Plough with my sister Rachel yesterday and we toasted Col Dave Nige Keith and Mum.  A white feather descended on the table from nowhere.  A year now passed since Colin left us with the Angels. 

Feeling more positive about next year. Rachel pointed out that she copes with this by thinking my recently found tumour (Must get this christened)  is only 13mm and Cruella was 29mm so has been found earlier!!!  I cope as I know exactly what to expect :-( 
My niece wrote the following poem in memory of Colin

In memory, of an amazing man. 

by Laura Tai Davies on Friday, 26 November 2010 at 22:07
A smile and a grin, you never had a frown
Your love for us all was something so special
That you can make me smile with just simple words
The cleverest idiot, in my universe.

Many people loved and knew you,
Nothing like how close you were to my heart
I just wish that I could turn back the time
And say the words that were you in your life.

Always look on the bright side of life
Was the thing that you lived by
You never faltered and never failed
You somehow always prevailed.

Your infectious laughter and the cheeky grin
The bushy moustache, hanging on your lips
The crap jokes you always did or told
The grin never faltering, even when you went bald.

I loved you from the beginning
Right till the very end,
You were my light and shining star
I now know you’re never afar.

I just wish I had the chance to say
‘I love you’ once more.
The fact you kept on laughing till the end
It made me thankful that you were Gods send.

I miss you and I love you
Never ever forget that.
Give everyone a hug from me,
And send a kiss to David please.

To someone who changed my life for the better~
I miss you Colin


Merry Christmas and Happy new year to our friends and family where ever you all are xxx

Sunday, 19 December 2010

Bouncing back

Despite my brother Kevin and his fiance Amanda being here for the weekend, feelings of anticipation won't go away.  I know what to expect, so why feel anxious ? I know why.  This is horrible.
I went through a box that I keep all the cards and letters I received last year and this made me smile for a bit at least.


May you always have an angel by your side 
Watching out for you in all the things you do
Reminding you to keep believing in brighter days
Finding ways for your wishes and dreams to take you to beautiful places
Giving you hope that is as certain as the Sun
Giving you the strength of serenity as your guide
May you always have love and comfort and courage


Back to work tomorrow that should keep my mind occupied.


xxx

Thursday, 16 December 2010

What a bummer

Went for my post op assessment yesterday in Bristol.  Looking forward to my having my dressings removed so I can have a shower and wash my own hair.  Holly soaked me when she did it for me.
After a chat with one of the ladies I was in hospital with last week, got called in after a 10 minute wait and along with my surgeon and breast care nurse a 3rd person was in as well whom I just thought was a medical student.  Mr Rater started talking about the processes the breast tissue goes through once it's removed and I nodded yes I'd expect it to be tested, then he hit with "we have found cancer in the tissue"
In summary the Histology report for the breast tissues shows Multifocal Lobular Cancer despite being on Tamoxifen with the largest focus being 13mm and identified as G2 Lobular Breast Cancer.  There are other lumps that has been confirmed as Lobular Carcinoma in situ (LCIS ) which increase the risk of developing into breast cancer later on. Unsure yet but it is likely to be a new Primary cancer rather then a recurrance of Cruella.
Treatment Plan - Mastectomy with an immediate reconstruction booked for the 11 January 2011.  They have discussed the technical aspects because this breast now has wounds and due the the amazing way they have healed he is confident with the options he has that he can still do another brilliant job. 
I have said I do not want to go through Chemo again and I got  "We will cross that bridge when we get to it" Well they are going to have to really sell the benefits of that one to me!
Holly took it on the chin not sure it's sunk in yet.
I'm ok had a good cry and back to making the practical arrangements required for me to spend a week in hospital.
Have asked them to supply me with a sick bowl as I come out of recovery this time though :-) 

Wednesday, 15 December 2010

Well that's that bit over with

and I am over the trauma which I will summarise for you .
Last on list so didn't get taken down till 4:30pm.  I was allowed a glass of water around 10:30am. Once in the theatre couldn't get a vein to put in the cannula.  3 attempts on my my left hand after reminding them not to use my right hand due to the risk of Lymphodema  4th attempt on my foot and it was looking like my op may not be happening then after some beating, the 5th attempt in my leg and I'm asleep.

I woke up in recovery feeling very thirsty and sipped chilled water whilst coming round and got took back up to the ward around 9pm.  Sipped a coffee and nibbled 2 biscuits.  When  I started to feel sick I realised I hadn't been give the buzzer control and I was attached to the bed by my drain. A confused nurse came in as with 2 of us calling and a 3rd buzzing wasn't sure who to help first but it was all for me and I confirmed I felt sick.  By the time the nurse returned the projectile vomiting had started missing the bowl.  She and I was covered and the bed.  The lady opposite me ducked as it flew across the room stopping just short of her bed.  During the episode I lost my control of my bladder so all in all I was in a very unpleasant mess which as  my nurse was on her own was left in for far too long.  After cleaning the floor my nurse got a bowl of hot water and cloths so I could wash myself down. A second nurse appeared telling me they were going to give me some anti sickness drugs and where was my cannular? All I could remember was that it was in my foot. Whoops nothing there.  You are not sticking another one in can I just have tablets and she explained that she would be able to inject me and it would just take a bit longer to get to work. Eventually I was clean and dry but not too warm in a pretty pink gown. so thankful I took my dressing gown. When I got off the bed ooh look canular in my leg !!

Come morning after another very small sickness episode, I was told they would need to see if my breakfast would stay down and my surgeon agreed I could go home with the drain,  I had to manage going home with 2 last year and by 10:30 I got thumbs up and put in motion my plan for coming home and thanks to Alex I was home for 2pm.

1 week later, wound healing well with drain removed Saturday. I am going back to Bristol to have my dressing removed today :-)

Monday, 6 December 2010

Boob Op pt 2

Well, Sue was feeling a bit fractious this morning, but got to the hospital and booked in all ok.

She texted me to let me know she was last on the list, so she wouldn’t be in surgery till late afternoon. So very happy we had such a lovely dinner last night courtesy of The Bebbs.

Texts received throughout the day were full of the usual really interesting comments, such as, just been drawn on, bored, hungry, bored, thirsty, bored, ooh and the anaesthetist is moving to Taunton next year! 

Anyway, she’s out of surgery and back on the ward now, hopefully, all things being well, should be home some time tomorrow.

Rachel xx

Sunday, 5 December 2010

Twas the night before my 2nd op

and a fabulous last supper was had curtesy of the Bebbingtons.  Thank you guys !!  
Plan A to get to the hospital was no longer an option this evening but before I could contact Plan B (Alex)  Nige Bebbington , who was never on my plan list,  told me he is taking me on the way to Street.  Ok a little detour but all organised now and Alex gets a lie in.

Feeling a tad nervous but the roast pork dinner has made me feel a bit sleepy.  Got an early start tomorrow and Rach will update blog in the afternoon   hopefully...
Night all

xx