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Friday, 24 May 2013

The C Word ….Our Journey ….(2009 – 2013)


My  husband was diagnosed in 2009 with NSCLC  – Lung Cancer
It was his own fault  – he smoked 80 a day at one point in his 40’s whilst working at 2 Cinemas
( Projectionist at one and Manager at the other)


Like most addicts he missed nicotine a lot but one cigarette would have been enough to screw with his lungs and break up his family ( he had been warned ,believe me…. by myself and our daughter ! ) He gave up in 2008 funnily enough but the damage was already done by then ( he had previously been diagnosed with COPD/Emphysema a few years earlier too)
So rather than bog down everyone with my erratic ramblings as we lunged from one crisis to another I started to write the odd thing on my thoughts whilst on this terrible rollercoaster called Cancer
These are not sentimental ponderings – at the beginning I was VERY angry with Life,Cancer, my husband , other people , myself – just ANGRY !!!!!
I still am to a certain extent and some of it is not pretty to read , I can do mushy stuff but that wouldn’t be the truth
Anyway , we’ll see …………..
You have been warned !!!!

                                         In The Beginning…

This my intro on the Macmillan site at the beginning of our Cancer journey–just so you get a flavour:
I am 50 this year and what a year it's been - Our daughter ( 27) got married in December plus my first grandchild is now due in August. Then my Dad ( 77 this year) had episodes of breathlessness plus his mobility decreased – they have said his left side of his heart isnt working properly and it’s affecting his kidneys ( he is still undergoing tests!)

                                           21.01.09

Finally, my husband John ( 69 this year and already has COPD!)) had several chest infections and was eventually sent for a chest X-ray where a small mass was seen .Then he had CT Scan,PET scan and a Bronchoscopy ( which bled – so they withdrew as they didn’t have the facilities to deal with it had it bled into the lung ‘!!! ) – we saw the consultant – who asked us if we knew why we were there! my husband said ‘ my wife thinks i’ve got lung cancer ‘ .miss a beat. then ‘well we are 90 per cent sure but we need to do some more tests to be sure ‘- 90 per cent hmmmmm don’t sound good to me but i’m no mathematician !!! The Consultant said it was a small growth but because of its position it had affected 2/3rds of the left lung .He was then sent for a VQ scan
He was sent to another hospital that specialises in Lung Diseases this time to a surgeon who after tests (more!) and looking at his health already (COPD) did his Maths and said removal of the lung would be the safest and normal procedure BUT he was concerned for my husbands quality of life afterwards as at the moment he only had one-third of left lung capacity helping right lung making up 70 per cent capacity in all!!!
He was due Bronchoscopy under general but was admitted to hospital for pneumonia on the day before his procedure was due ( discharged after a week) On the Saturday morning – he’d been home 4 days he woke and had trouble breathing which escalated in minutes , I called 999 and he was re-admitted.They wanted to discharge him with home oxygen on the night but he said he was too scared and it being Bank Holiday they couldn’t arrange home oxygen till Tuesday anyway
Sunday night became very painfully breathless on 3 occasions ( sats dropped to 47 at one point ,blood pressure 95 over 200, heartbeat 152 and temp 39.2) we were told they could take him to ITU but couldn’t guarantee waking him again because of breathing problems plus as far as Resus concerned they could do this but it wouldn’t get rid of the main problem – why can’t they discuss these things on admission or when you’ve got a clear head!!!
Next morning he seemed better not brilliant but better than previously .First it was ? fluid on lungs, then ? blood clot ….more tests! Then they mentioned the small growth had grown or swollen (the difference???)He came home on Saturday 9.05.09 – his discharge letter mentions small effusion – no one really has explained anything he’s now on steroids indefinitely and when I asked they said they can’t guarantee an episode like that Sundays wont happen again and to call 999 if he gets worse!!!
His biopsy is now booked for 9.06.09 – fingers crossed !!! he’s not as mobile as he was – gets around flat but hasn’t attempted downstairs( there are 13 steps from front door to landing) ….yet!!! i know my Jonathan! I'm angry( at everyone’s vagueness and delays caused by Johns illness),guilty (from feeling angry) but most of all scared…..scared that the love of my life is going away from me – either in death or just mind because of his illness – scared that because they couldn’t guarantee waking him up in ITU will the same happen with his biopsy ? I knew when I married/met him that there was an age difference (19 years) but it has really hit home since all this – it’s not right ,it’s not fair…and I hate positive people – how dare they ! They don’t live with him , they don’t love him!I’m sorry but this is how I feel right now …..just don’t tell John!!!

UPDATE 23.05.09

Had GP on Thursday as John had breathless attack and slight cramps in legs -GP upped steroids and prescribed Antibiotics .John had panic/breathless attack in shower yesterday – it settled eventually then about an hour later he was breathless and dizzy got GP out again who persuaded him to go to hospital had to call 999 shortly afterwards as had another attack – he is now settled (on oxygen ) they seem to think its a combination of his COPD ,and Cancer coupled with panic attacks – great!!! Gonna keep him in for a few days – ? does this put pre screening/biopsy in jeopardy – will we ever get this diagnosis and treatment ????

                                    UPDATE 11.06.09

Well John was discharged on 1.06.09…….They tried another Flexi Bronch ( local ) but his Oxygen levels dropped so low they had to pull out three times -Rigid Bronch now cancelled as they cant do it due to his breathing ( really?!) they say they can diagnose from washings from very first failed Bronch ( don't you just love these guys !)
We are attending OPA with Onc Consultant today for diagnosis and treatment plan ( I googled Johns Discharge Letter when I got home he is T2 N1 MO – And the Mac Nurse sent booklets with diagnosis details in a couple of days later love the communication everyone!)
We’ve got Attendance Allowance – now looking at other stuff as I am giving my notice after today( It will be tight financially but we can do it – thank god for basic spreadsheets!) as mornings are rough plus he sometimes has breathing attacks during day .Have contacted Social Services -they are going to do a Carers Assessment plus Occupational Therapy are sending equipment plus Assessment too ( Roll on the commode and high toilet seat I say!) Will update as and when ……..

                                       UPDATE 23.07.09

Well ,it aint good news that’s for sure the farce goes on …….At OPA was told being referred back to Surgeon re Laser Therapy as Left Lung collapsed completely there is only 47% capacity in right lung due to COPD and they want to try therapy then Radiotherapy in a palliative way .           I queried Oxygen Levels and was told Surgeon ok to deal with this plus different procedure to Lung Removal (!) left message for Mac Nurse re: concerns but she said everything ok if Consultant said so !
We eventually got Surgeon OPA who said procedure inappropriate given O2 levels plus needs entrance and exit into left lung and now there is only gullet ! He apologised for wasting our time and wasted journey saying he had attended last 2 weeks at MDT meeting and our OPA hadn't been mentioned .I left another message for Mac Nurse who apologised but said we had been sent there to cover possibilities!
Had 2nd OPA with Onc Consultant who ,eventually and -I felt reluctantly -is arranging Radiotherapy Mon- Fri for up to 4 weeks ( depends) John is happy something is being done – also saw Mac Benefit Nurse , she is applying for Grant for Mobility Scooter – this involved a medical statement from our Mac Nurse re Johns Condition and Prognosis – John has said all along he doesn’t want to know how long as he’s hopeful it will be years (!)…….I got him to sign form without looking at in its entirety , he was just excited we may get a scooter………………..Diagnosis = 10.03.09…………………….Prognosis = 6-9 months …..Merry Xmas and a Happy New Year……………

                                      UPDATE 23.08.09

Well, John is about to start his 3rd week of Radiotherapy (4 in all) his cough is much worse ,mainly later in the day ,and he is extremely tired after treatment -his mobility is down but ,yes, we have the Scooter when he feels fit enough. We have moved to a ground floor property and he loves the fact we have a patio with door that brings in the fresh air . Plus an area he can sit in on a sunny day – yes we have had a few! When he feels able he is even making a cup of tea( in stages) and washing accessible body areas depending on his breathing etc.
His very good friend , Ginger,  from work (John was Cinema Projectionist ) has been taking us both to Radiotherapy (Mon-Fri) he has been wonderful, and emotional at times. Our Daughter finally gave birth on 20.08.09 to George Edward Allen , they live in Cardiff and are coming down for a few days on Monday but we have seen them all via Video Call on MSN marvellous! John is presently in bed – it is Sunday!
Woke breathless with high temperature ,gave him paracetamol and he seems to have settled and gone back to sleep now – shall keep checking on him .Have OT coming in on Friday to fit Bath Lift etc so that will help. I am amazed everything is up to individual whether benefits, housing or aids – surely this should be some sort of package on diagnosis – what about people who don’t know where to start looking or even if there is anything available ??? Uh oh I hear rumblings – actually he’s using his nebulizer .Back in the old routine methinks !

                                      UPDATE 22.09.09

Well.its been a while – so I’ll try to bring this up to speed as best I can!
John was admitted on 28th August for pneumonia ( again) This time I called GP who called Oncology Consultant ,who got GP to ring me to say was sending ambulance for admission into local hospital as Oncology wards  only dealt with Chemo/Radiotherapy problems and this was a respiratory problem (?!) Anyway , admitted and eventually diagnosed with pneumonia ( again!) I was thinking ‘ok prognosis 6-9 months ,this could be it!’ so very wary and watchful though John seemed to gather himself enough to attend three sessions of Radiotherapy whilst an inpatient (I met him there)
They gave me his medical file whilst waiting….big mistake ( also against policy!) realised although treating pneumonia with antibiotics were also treating as TLC (understandable) DNR in place at request of consultant plus ticked ‘next of kin aware! I could understand ruling but not my consent ( must have been taken from previous admission but dated from this admission)-  this was when I let John know about DNR ( no he still doesn’t know Prognosis and wont till he asks that’s our deal!) although shocked at first he was undecided whether to say anything( he didn’t in end)I promised him that when anything happens he will be at home and I intend to try my damnest to keep that promise! that said I let it be known I was very happy to have him home ASAP
Well he’s been home just over 2 weeks, he’s finished Radiotherapy and is due to see Consultant October 19th .It hasn’t been brilliant the scooter hasn’t been used , the wheelchair is used to get him to and from bedroom but we now have Facebook! He has started posting blogs daily – not necessarily about his illness but about anything we’ve already had Tea ,Breathing and Ice cream discussed it is so funny this is the John I loved and am still loving !Yes, I do think we are at the beginning of the End – we have had 3 nights of interrupted sleep due to coughing and breathlessness but  I also think its gonna be a long ending full of ups and downs ….but we are gonna do this together; hopefully.
And the next person that says to him  ‘ oh you look well/better’ – I’m gonna smack in the face!

                                       UPDATE 25.10.09

Well Radiotherapy inflated Left Lung to give him 27 per cent ; it doesn’t change anything , it will just help his breathing, He has now got another chest infection and is on his 2nd set of antibiotics plus paracetamol – he is sleeping a lot and his mobility is restricted but he is talkative as ever . I feel wiped out at mo plus anxious about everything – so no change there! Our Daughter is due down on Friday and ,hopefully , this time John will see his new Grandson for longer than 24 hours as per last visit ( his last admission) Here’s hoping!!!

                           UPDATE SEPTEMBER 2012

Well, since 2009  Hubby has had 3 lots of Radiotherapy and 2 lots of Chemotherapy …….and is still going strong ( figuratively speaking that is !) On September 24th ( 4 days before his 72nd Birthday and halfway through his 3rd year since diagnosis ) we received the results of his latest CT Scan .The primary tumour in his left ,collapsed lung has grown and now completely blocks its airway – the small tumour in his remaining right lung has also grown and is in the lymph nodes but ,as yet, hasn’t spread anywhere .
There is a drug he could take but its side effects are pretty nasty( complete hair loss, vomiting and diarrhoea ) plus  there is only a 10% chance of it working if at all ( flip it over and that’s 90% chance of failure)As he ,at present, has a good quality of life  the Consultant was reluctant to pursue usage of said drug .Hubby agreed and made the decision to ‘let Nature take its course’
Since then it has been as though a weight has been lifted from his shoulders he is back to the man I fell in love with all those years ago – he says he feels normal ‘ just like everyone else, because they don’t know when they are going to die either’  ( although he seems to be thinking 12 months the way he speaks sometimes when we are alone )He still gets tired ,his appetite is up and down , he is sometimes sick if he coughs too much, hates stairs as they make him breathless and hurt his lung   and he has pain in his neck from time to time but ,all in all , he is so much brighter, Am I worried,scared etc etc ??……..strangely no , we still have our own sense of humour ( very black and shocking to many) but on the whole its a happy , lively house at the moment …as to the future? we’ll deal with that whenever – we’ve had 3 years of bleakness , 12-24 months of  ’what the hell’ should be fun!!!!

                                     NOVEMBER 2012

Sometimes it doesn’t pay to be optimistic – nothing drastic , just a slow, steady chill out at the moment. Hubby's food  intake has dwindled ( so anytime he fancies something it is duly shopped for) He is defiantly more easily tired out and napping more ( though alert when awake)
Although they found nothing on CT Scan re:Neck pain – it more constant so he has just started 10mg Morphine plus regular liquid paracetamol – it is making him more sleepy so he is  balking at it after 3rd day on it – will consult Pharmacist he says ( I say speak to Hospice Nurse first as she prescribed it or GP….we will see over weekend) Neck pain still mildly present – so might need further investigation ( we will see)………

                                    DECEMBER  2012

Well, here we go again , it started with a sniffle and , at the moment , its debatable whether it’s a chest infection or something nastier – he’s in bed most of the time , our friend oxygen is back as is old nebulizer !
The Hospice Nurse is coming tomorrow ,  regular visit, but is gonna talk to GP about possibility of Chest X Ray (I think they suspect pneumonia , though  he has no temp , or ,quite possibly, Plural Effusion ( yuk! not a nice procedure chest drain city !) I’ve mentioned this to him but I think he just wants the breathlessness to stop along with the pain  – the pain is ‘more of an ache’ he says. He’s on antibiotics at the moment but may need some more ( for all the good they are doing) He has cancelled everyone visiting though  is hoping he’ll be well enough to see our daughter and the grandchildren at the weekend  – we’ll see ………….
Well! He never ceases to amaze everyone – Yesterday he started to perk up brainwise tho his appetite still needs being kicked up the ass! This morning ( 7/12/12) he has woken up raring to go – very verbally LOUD!!!! He is Back!!!! He still has a horrendous cough that frightens the life out of me , as does his sneezing – my husband isn’t a quiet man ! It’s lovely to have him back ! Now we can get on with Christmas !!!
Apparently it was a flare up of his COPD and nothing to do with the Cancer ; and the same goes for his neck pain ( it’s not Cancer related) so it’s just tiredness and diminished food intake that is !!!!  Had a chat ( very quickly ) with Hospice Nurse and she indicated he wont survive another 2 years ( I hinted at something he had said – this wasn’t the Nurse being tactless!) but we will see anything is possible with His Lordship!
Merry Christmas one and all xxxx

                                     JANUARY  2013

He is now on his 3rd set of antibiotics in as many weeks  ,I took a sputum specimen ( finally!!) up to GP’s last week and the Doc phoned him to say the  chest infection is  still there and he was leaving prescription at Reception as needed stronger antibiotics ! He is defiantly eating less , in fact its a struggle some days to find something he DOES  wants to eat – his tea drinking days are over ; he hardly manages to finish a mug .
He is tired a lot , though it could be the morphine he’s taking ( 5mg in morning and 15mg at night) but Hospice Nurse says this is very small amount – his neck is still playing up but any mention about increasing dose is met with refusal on his part ( a lot of fear in that direction however you try to explain it to him – getting him to take morning and evening 5mg extra took weeks of persuasion from me, Hospice Nurse and GP Nurse)
I got him out in wheelchair twice before snow fell but he is not keen at all no matter what is on offer ( though he does love visiting our grandchildren but then he’s exhausted afterwards and all he’s done is sit and watch them )
He is burping madly too – its got to hurt they are really loud and nasty sounding , he has nausea from time to time plus he throws up at least once a fortnight ( we think it might be late dinners or greasy food but we’ll see………have made dinner time much earlier and am trying to keep him off greasy stuff ) He is experiencing constipation at times ( we have powdered drink for this ) even going to the toilet knocks him breathless so constipation is the last thing he needs ! He has bouts of frustration and anger at times – I get the result of it ,usually very nasty verbally , I usually ignore it/him but it can get to me sometimes .
So , will update soon as something is on my mind or , god forbid, something happens
Keep Safe and Take Care xx

                              

I wrote this out of  anger at some point in 2009. please don't be offended – it was how I felt /feel about our situation

                                       *******************************

my husband is dying …and i don’t know if I'm glad, sad or mad – and I'm pretty sure the world out there does not feel comfortable about this ,
glad it sets me free from being controlled by someone else – yes if ur in a couple of situation you do bend, sacrifice a part of you – or at least i always have .
sad this is my one true love ( despite being married twice – this one was just it!)
mad how can you do this to me, us .you are totally selfish – always ‘well i enjoy it’ ‘you can ask me don’t tell me ‘ ‘don't try to run my life’…..
i wash you now cos it makes you breathless
i wipe your ass cos u cant
i fix ur meals/drinks cos u cant stand long enough
i dress you cos u haven't the breath
i keep u entertained cos ur housebound ( thank god for the Internet!)
i find out what you could do if you had the breath/mobility.energy on the day/in the future
i make sure your medication is ordered in time
i clean the filter on your oxygen machine /nebulizer mask/inhaler tube
i make sure you have enough portable oxygen if we ever manage to get out
i get up at 3am if you have a breathless attack
i phone 999 if we can’t get ur breathing under control/you have temp of 39.5 or above
i get you to have a nap if you’dont sound right’/look pale
so ,yes, im pissed off every time i see someone light up , every time i hear someone ‘tried’ to give up ‘ every time someone says i’t doesn't matter, its my life and i’m not being dictated to!’
cos its just not about them,it just wont affect them!!!
there are four children , five grandchildren and one pissed off second wife ( the first died years ago ) at least that this particular CANCER is affecting not to mention the friends, I mean the REAL friends who have physically visited, helped and took time out from their own lives who this has affected!!!
so light up, have a drag, enjoy the moment; no really – it’s not your fault it’s the government, it’s the tobacco industry, its the media ……….its not you , its not your choice ,its not your fault … asshole!

                                                         ***********************


What a difference time can make , especially the last stolen 3 years – You miss me when I am away from you, you have difficulty sleeping with that damn cough and find comfort in my arms ,you enjoy our days together whether at home or shopping by wheelchair or taxi …..you still can be a pain in the ass – you are totally in ‘john’ world at times and you can get quite hysterical over simple stuff sometimes
I remember the good old days …..when I use to run to catch up with you, when you use to get mad at me for stopping indoors ,when we use to go for a drink ( anywhere and everywhere!) , danced on the stage of the Gala Cinema ,you use to hold me tightly in bed now it hurts or it makes you breathless(!?) I can only quick kiss you as that makes you breathless too – all the physical things that moulded us into one have gone now and wont return ; and yes i miss them  but your still ‘here’ your soul still lives – we talk, we laugh , we watch TV and movies and we cry ( but at immaterial stuff such as movies or books ) – you rarely talk about the inevitable whilst I ask questions and get an honest answer or none at all – we bumble along in our own way
I hope its quick, I hope its painless but I’ve read too much to know neither is true- Just know this , I love you , we all love you and , by hook or by crook , I’ll be there holding your hand till the curtain rises on another instalment of your adventure series  xxxxxxxx




                          Goodnight My Beautiful Man xxxxx

Okay , so in accordance with the rest of this Blog what I am about to write is an honest first person account leading up to my Beautiful Jonathan's passing ……
The trouble with his breathing increased and so eventually I got the GP in ,who examined him and said there was no sign of a chest infection but ,at rest , his heartbeat was 130 – he prescribed calcium based Beta Blockers .Later he rang to check up on him and when I said ‘Don’t you think IV Antibiotics would be a good idea?’ assured me with ‘ We don’t want to go down that path just yet’
He couldn't make it to toilet from bedroom without a severe breathless attack so I phoned District Nurses to explain and request Commode and Urine Bottle( which they ordered as Priority and was delivered next day) they also came next day and suggested I get GP  in to review again ,which I phoned for He never showed or phoned back At 8.30pm on night John got extremely breathless , when I said ‘ Do you need an ambulance?’ ( he was very anti Hospital)  I got a thumbs up ( he couldn’t speak) They arrived Got Oxygen running( Home one was 2 liters – they had it at 8 liters)We got to QEH and were  in Clinical Assessment Unit where they started IV Fruesemide ,( he noticed mottling on both legs and asked me what I thought it was , I said I wasn’t sure – now was not the time! ) till being transferred to Ward 415  in early hours They ran several blood tests plus Chest X-rays and IV Antibiotics(!!!!!!) Got him nebulizer and Oxygen – The next day Kelly(our daughter) and Warren (her husband) arrived with the grandchildren George and Molly .Warren  took me home to get showered and changed as our daughter Kelly kept her Dad company , when I got back she told me the doctor wanted a word with us both. We were sat down and told he had a very bad infection and whilst they would ram him with Antibiotics they expected him to pass over the weekend – I have to say they were wonderful – the doctor was lovely as was all the staff especially the Night Staff who looked after both of us that night ( Kelly stopped over – Thank you Warren xxx) The phone calls were made , some said they’d come Monday but Kelly, Bless her, explained he wouldn’t be here .She was my Rock, contacting people and seeing I ate and slept .On the morning the visitors came each one lovely in their own right – John was barely conscious . Then  early the next morning (about 6am)  John suddenly rallied himself and we had a marvellous chat for about 2 hours, laughing and talking but we both knew not to be hopeful ( we had to remind visitors from previous day not to get their hopes up – he was well on form for most of the day  getting mad at me for not understanding what he was saying beneath his oxygen mask ”WATER!!’ or  ’TEA!!’ – the fruesamide had made him thirsty I guess!!!)  He began to tire towards the evening Kelly was torn between staying and going home – she needed Warren and our grandchildren but sensed the end was near’ I thought something would happen if I wasn’t there , I think he just wanted it to be just you and him ‘When we were ,at last alone, I said ‘Its ok to go – I’ll be ok ‘ he turned to me ‘WHAT!!!!’ he was furious ! I said ‘If we get through this we are going to have a Lets Celebrate Life Party’ he grinned’Bloody Right!’he said – His breathing was intermittent ( Kelly said , and she was right , like a frog ) I kept telling him I loved him and he would tell me he loved me but it was intermittent as was ‘our signal’ -when we were in a crowded place/with others we use to squeeze each others hand three times to say I love you ( John introduced the two-handed squeeze meaning ‘me too’ our joke as I would write long love letters to him years ago and I’d get a card back saying ‘me too’ )The Night Staff bought in a fold down bed – I’d slept on visitors chairs for 2 nights ( so had Kelly ) ‘Have a decent sleep’ he said – I wish I hadn’t with all my heart !!! I heard him call’KIM!!!’ and I was so tired I thought ‘ if he shouts me again I’ll get up’ ………The next thing is a nurse shaking me awake saying’ He’s stopped breathing’It wasn’t him but it was……..he passed at 2.30-40 am on Sunday February 10th 2013 – I asked to lay him out ( I had been an Auxiliary Nurse for 12 years)  but then I had an overwhelming urge to get to Kelly – I knew I wouldn’t be able to phone/notify anyone once I saw her so I phoned his daughters from his first marriage – I know she understands but I know it hurt her …..it was approx 6.30am ………..
Cause of Death
1)  Septicaemia
2) Pneumonia
3) Lung Cancer

    POSTSCRIPT……..

I fell in love with his hands, beautiful and gracefully lacing a projector – on the eve of his Funeral I visited him at the Funeral Home ; yes he was cold and he lay with his eyes shut ( he always slept with them half-open – so this was a bit weird but as Kelly said they couldn’t really lay him out like that ! ) and as I talked to him, cried  and kissed and hugged him , there they were – cold yes but STILL his hands .Beautiful .

                                      OBITUARIES


JOHN ON SCREEN





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4 comments:

  1. So sorry for your loss and what you both went through. I feel wrung out just reading all that so I can't imagine what it was like to live through. Love to you and yours.

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    1. Thank you, love to you and yours too xxxx There's so little information out there( or there was at the time) I wanted/want to help others in a similar situation xxxx

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  2. My Dad died of lung cancer last year (wasn't a smoker). My heart really goes out to you and this made me cry. So much of my Dad's last few months is so similar to your husbands. Life is so cruel and cancer sucks more than words can say. I have a post dedicated to him and his last few months on my website.

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    Replies
    1. I agree- Cancer is a bitch! (sorry for language - makes me angry!) Thank you for your lovely words xxxx Sending you love and hugs xxx

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