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An update on Dad

User
Posted 12 Feb 2018 at 18:34
Dad spent the night in A&E and was moved to a ward today. They are giving him quite a cocktail of drugs to manage the pain. We hope the MRI will be arranged tomorrow so we can find out why this horrendous spinal pain has occurred. I can’t fault the kind doctors and nurses that we have met today. It’s been an absolute blow to find ourselves in this situation but I’ve felt closer to Dad than ever over the past few days. I just don’t want him to suffer. Much love, Pen x
User
Posted 13 Mar 2018 at 08:24

Best wishes for Wednesday, my OH was in a similar position 2 yrs ago and found the waiting between infusion 1 & 2 were the longest and most nerve wracking mainly as everyday was a new expireance .once dad starts to see his PSA lower it does get easier .
Keep us posted
Debby

User
Posted 09 Apr 2018 at 18:08

Hi
Tony's psa was only about the same as your dads and he is gleason 9 t3b had spread to the seminal vasculars and was told he had a really aggresive cancer, he is still here 12 years after diagnosis and has been on and off hormones ever since, his psa did go up to over 50 a year or so again bit was put straight back on ht and it was down to 0.1 fairly quickly

regards barbara

User
Posted 12 Feb 2018 at 18:34
Dad spent the night in A&E and was moved to a ward today. They are giving him quite a cocktail of drugs to manage the pain. We hope the MRI will be arranged tomorrow so we can find out why this horrendous spinal pain has occurred. I can’t fault the kind doctors and nurses that we have met today. It’s been an absolute blow to find ourselves in this situation but I’ve felt closer to Dad than ever over the past few days. I just don’t want him to suffer. Much love, Pen x
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User
Posted 12 Feb 2018 at 19:12

PenP, you are spraying new entries all over the place. We need your Dad's story in a continuous thread, so that progress or progression can be followed logically.

Best wishes

AC

User
Posted 13 Feb 2018 at 14:27
Sorry AC I think I’ve only just realised that’s how this site works I’m not sure if I can amalgamate all my posts into one but il investigate as I see your point. Dad is just going for his MRI now to see why this acute pain started so suddenly. We’ve just opened the latest oncology letter which states that the cancer is now in bones but particularly lower spinal area and pelvis. Dad was a G9 on diagnosis but it’s has now spread. The oncologist has recommended chemotherapy but Dad hasn’t managed to have it yet due to a high heart rate and now the pain resulting in him being sdmitted. I have to say the nursing staff have been excellent. It’s difficult to know what will happen next. But it’s completely out of my control.
User
Posted 13 Feb 2018 at 15:04

Hello PenP.

Not to worry, but it would be easier with more flow otherwise people have to keep flicking from one to the other.

If it was me, I would find my original thread, then copy and paste the latter entries in chronological order, or it might be easier for you to copy your posts chronologically into your profile.

You would also find it useful yourself as a reminder of the events.

Hope dad gets some relief soon

We can't control the winds - but we can adjust our sails
User
Posted 13 Feb 2018 at 17:11

PenP, the Gleason 9 won't have changed. The spread can be tackled in a variety of ways. Chemo is usually the first option, but your Dad's oncologist can probably suggest the others. Perhaps it's a case of getting the heart rate under control, sorting the pain out then chemo? Sounds as though he is in good hands anyway.

AC

User
Posted 13 Feb 2018 at 18:29

Before anyone posts hearty reassuring messages about the different treatment options available, please refer back to PenP's previous posts. Her dad was told that he has 3 months to live so presumably the chemo is palliative not what we have all come to know as 'early chemo' to improve the efficacy of his HT. We don't have all the information although I have posted twice suggesting that it would be helpful if Pen and the family tried to find out why dad has been put on a terminal path - it may be that he has significant spread that hasn't been explained to Pen. One possibility is that the heart problems are a complication of the lymph involvement but that is only guesswork. Everyone needs some hope to hold on to but as someone pointed out to me recently, this is not a forum for the faint-hearted and we do a dis-service if we gloss over what sounds like a very serious turn of events

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 13 Feb 2018 at 19:11
The PC is in the lower spinal area and pelvis according to the letter we received today. I’m not entirely sure why three months were mentioned, it’s all so confusing. The letter did state a recommendation of chemo but we cannot start yet even though the cardiologist has given him the go ahead. But tonight we have another complication! MRI results show no spinal cord compression but instead a possible kidney blockage and now Dad has a temperature so another scan been ordered. Yes I’ll try and cut and paste everything so it’s together. Thanks again everyone.
User
Posted 15 Feb 2018 at 18:35
Dad has been waiting all day for a CT scan to determine if the infection he’s currently got is linked to the kidney. Doctor just came round and said the department have refused a CT scan based on the fact he’s not long had one... I believe it’s to do with the radioactive dye? The consultant urologist who ordered it as ‘urgent’ is now in surgery and we can’t contact him. So Dad continues to be stuck in hospital and we’ve lost a day...
User
Posted 17 Feb 2018 at 15:47
It looks like Dad was hospitalised all week due to an infection which points to the kidney but no stent was required in the end and they ruled out cord compression. The urologist is just the most wonderful man. I called his secretary yesterday morning and explained the scan he’s ordered for the previous day hadn’t been done. He was so mad! Came to see Dad within half an hour and was sorting it (but ultrasound not CT). The pain that landed Dad in hospital on Sunday has gone so that is positive. We now just have to build up his strength again to see if chemo is still an option. The nursing staff have been absolutely wonderful. The NHS can be amazing.
User
Posted 17 Feb 2018 at 18:43

So pleased something positive came out of it all PenP.

We can't control the winds - but we can adjust our sails
User
Posted 19 Feb 2018 at 18:52
It’s been lovely to have Dad home after his hospital stay last week. He even went for a short walk down the road today. I’ve had to keep away because I’ve been under the weather and am concerned about infection. He goes to the chemo unit tomorrow for bloods to see if there is any possibility he can go ahead with this treatment (maybe even this Friday). I am using this forum such a lot to find out how other people have managed with their own diagnosis. I think we’ll all feel more positive if we can actually go forward with this treatment plan after the setback last week. X
User
Posted 19 Feb 2018 at 18:53

Wishing dad good luck for tomorrow Pen.

We can't control the winds - but we can adjust our sails
User
Posted 19 Feb 2018 at 20:27
Best of luck

Debby x

User
Posted 19 Feb 2018 at 20:31

Fingers crossed he gets the go ahead this time

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 24 Feb 2018 at 09:10
We got to the chemo unit yesterday morning but yet again the heart rate prevented it from going ahead on schedule HOWEVER those amazing nurses kept Dad in for two hours and after an agonising wait decided to proceed so he’s had #1 of chemo. It was a rollercoaster of a day yet again but thank goodness he is on some sort of treatment path again and not in limbo after the initial false start then the hospital admission. My mind is just spinning with all the ups and downs.
User
Posted 24 Feb 2018 at 09:12

He's made a start pen. That is brilliant news.

We can't control the winds - but we can adjust our sails
User
Posted 24 Feb 2018 at 12:22
Thank you Johsan :o) Please have everything crossed for chemo #2 in three weeks. Just got to keep him hanging in there xxx
User
Posted 26 Feb 2018 at 13:34

Great news something is happening at last.

Take care

Dave

User
Posted 26 Feb 2018 at 16:04
Thank you Davywls. How are you getting on with your treatment?
User
Posted 26 Feb 2018 at 21:06
Originally Posted by: Online Community Member
Thank you Davywls. How are you getting on with your treatment?

I’m doing very well thanks.. Saw Oncology consultant last week for three monthly checkup. He’s very pleased with the way things are. I really hope chemotherapy helps your dad now it’s has eventually started.

Dave

User
Posted 12 Mar 2018 at 18:46
So Dad is into his third week post chemo #1. Time seems to be moving so slowly. A lovely Macmillan nurse visited him today which was useful but understandably emotional. Tomorrow it’s bloods, Wed the consultant (who I will meet for the first time) and if all ok, chemo #2 on Fri. It’s been such a rollercoaster what with all the problems Dad has had throughout February with treatment stopping and starting and the hospital admission. He has ok days and not so good days which I guess is to be expected. It’s such a lot for everyone to get their heads round. I really really hope the chemo helps him and knocks it back for a while but I know to be cautious. Everyone seems to react to treatment very differently and I keep having to remind myself of this. Anyway I just wanted to say hello to everyone. I’ll update again as the week goes on. PenP x
User
Posted 12 Mar 2018 at 20:15
Good luck for Wednesday Pen. Hope you get some positive news.

Ann

User
Posted 12 Mar 2018 at 21:24

Hell PenP and thanks for the update. Good luck to dad for Wednesday

We can't control the winds - but we can adjust our sails
User
Posted 12 Mar 2018 at 21:43

Best of luck with results x

If life gives you lemons , then make lemonade

User
Posted 12 Mar 2018 at 22:55
Thanks for the update. Good luck for this week’s results Penp.

Ian

User
Posted 13 Mar 2018 at 08:24

Best wishes for Wednesday, my OH was in a similar position 2 yrs ago and found the waiting between infusion 1 & 2 were the longest and most nerve wracking mainly as everyday was a new expireance .once dad starts to see his PSA lower it does get easier .
Keep us posted
Debby

User
Posted 16 Mar 2018 at 21:03
Dad and I saw the oncologist on Wednesday. First time I’d met him. If I’d been alone I may have asked him more things but wanted to remain sensitive to what Dad wanted to ask (and felt he could cope with hearing). However I was pleased that we were not rushed and all the questions Dad did ask were answered clearly. PSA started at 19 in Feb 2017, went down to 1.6 post radiotherapy then back up to 19 but down to 14 after chemo number 1. Bloods were ok so we proceeded with chemo number 2 today. After one aborted chemo then then the next almost aborted (all to do with fast heartbeat) he did really well today trying to keep calm and even though his BPM was 120 they decided to go ahead. He is so pleased. In and out within two hours. He’s had a funny taste in the mouth, fatigue and some hair loss but considering how quickly everything deteriorated in a short space of time I’m super proud of him because this is NOT easy at all. The consultant reiterated that it was disappointing to have such early reoccurrence but confirmed chemo was the best thing for Dad to try for now. He tried to talk about MSCC but we quickly moved on and I just said I’ll take the leaflets and read later. It’s hard for me to keep away from Google and wondering what the future holds. I keep having to remind myself that everyone is different. I’m having some counselling at the local hospice which is helping me cope with it all. If I can keep going I know that’ll help Mum and Dad. So it’s been cathartic to talk to someone. I still check this forum every now and then and am always interested to know how everyone is doing. Wishing everyone a peaceful evening. PenP.
User
Posted 16 Mar 2018 at 21:47

Wishing you and dad the best ,take care and look after Mum and yourself , google can inform but also crush you , keep asking and talking on this site and there are many helpful and knowledgeable people to help .
Best wishes
Debby

User
Posted 16 Mar 2018 at 22:11

PenP it is really important that you, dad and the rest of the family know everything you can about MSCC - it can come on so rapidly and is extremely serious. If the doctor wanted to talk about it, they must think that dad is at particular risk.

Re the metallic taste, have you tried freezing fresh pineapple for him to suck during the infusions?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 17 Mar 2018 at 11:30

I pulped fresh pineapple and made into lollipops. They helped but I don’t think anything will actually get rid of it. I found that the metallic taste came on several days after each infusion and lasted around 10 days or so.

Glad your dad got his second cycle ok after the problems with the first. The fatigue unfortunately is part and parcel of the treatment. Best to just give in to it when it comes on. There’s nothing to be gained by trying to fight it.

Dave

User
Posted 28 Mar 2018 at 19:10
Dad is into his second week post chemo #2. All being well, chemo #3 next Friday. We had a lovely (albeit short) walk on Saturday with a dog I’d borrowed which really lifted his spirits. I took a photo I was so happy to see him out and about. He has lost quite a bit of hair now. It’s weird how some side effects affect some and not others. He had another zolodex implant today. This was the first time a nurse asked him to sit instead of lie as she administered it and he said it went much better. So there is a tip for anyone having a HT implant!
User
Posted 28 Mar 2018 at 21:20

Best wishes and thinking of you all
Debby

User
Posted 29 Mar 2018 at 17:42

PepP,. It is all about creating a fold in the muscle into which this damned great needle can be inserted. Obviously, when sitting, the belly naturally folds a bit so the nurse was probably more easily able to grab the chunk of muscle needed, especially if your Dad is slim. Personally, I've stuck with lying on my back over the years and it has worked for me.

AC

User
Posted 29 Mar 2018 at 17:42

PepP,. It is all about creating a fold in the muscle into which this damned great needle can be inserted. Obviously, when sitting, the belly naturally folds a bit so the nurse was probably more easily able to grab the chunk of muscle needed, especially if your Dad is slim. Personally, I've stuck with lying on my back over the years and it has worked for me.

AC

User
Posted 08 Apr 2018 at 17:13
I’m pleased to report that Dad was well enough to receive chemo #3 on Friday. I took him and this time it was all pretty straightforward (even though his heart rate was still very high). We were in and out within two hours. We are starting to get to know the nursing staff now who are all absolutely brilliant at their jobs plus we’ve started to chat to other people receiving chemo (and their families). Dad had the same symptoms as before (crazy hiccups, a bright red face, plus feeling a bit wired from the steroids). This weekend he’s taken it really easy and is resting lots. His taste buds feel better this time (must be those lollies). The PSA was 16 before chemo#1 then 14 and now 9. So he is encouraged by that. I would like him to have a scan at some point to see what effect this chemo is having on the mets but the consultant seemed to indicate they’d rely on other means (PSA? Bloods?). This makes me nervous as he wasn’t scanned after radiotherapy and we were blissfully unaware for six months that the cancer was spreading.
User
Posted 08 Apr 2018 at 18:17

Good to see that this one has gone reasonably smoothly. I don't think looking at scans would tell you very much at this point - I don't think chemo makes tumours smaller or causes changes that you could see on a scan ... what it does is critically injure the nucleus of each cancer cell so that as it replicates in the future, it is weakened.

Imagine each met / tumour as a satsuma. Surgery cuts out the satsuma. Radiotherapy fries the satsuma. Hormone treatment starves the tree so that the satsuma doesn't grow and cuts off the sun so the satsuma never ripens. Chemo is like getting a syringe and injecting poison into the satsuma so that its insides shrivel up and go bad but you can't see that until you peel it because the skin still looks fine.

They will probably measure progress by his PSA (although chemo doesn't necessarily make the PSA drop the HT should) and other bloods such as his ALP which indicates how active the bone mets are. 

Edited by member 08 Apr 2018 at 18:22  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 09 Apr 2018 at 09:00
Thank you Lyn for explaining that to me, I really appreciate it and will pass on your message to Dad.

User
Posted 09 Apr 2018 at 17:25

PenP,

Lyn and I have disagreed about chemo reducing tumour size before, so I won't repeat my view, but where I am sure we would agree is that after three cycles is too soon to expect to see a radiological response, do I think your consultant is spot on. I reckon he would arrange a scan after six cycles, especially if the PSA keeps on its very welcome downward path!

Keep the faith!

AC

User
Posted 09 Apr 2018 at 17:59
Thank you AC - I will see what the consultant thinks about a scan possibly half way through. I’ve not been able to ask as much as I’d like to (obviously respecting Dad’s wishes to not know too much) so I’m a little in the dark as to any previous scans/locations/sizes etc. Although I guess knowing isn’t going to help much. But yes knowing the PSA is going down is good news. I still don’t get this PSA business - Dad’s has never been higher than 19 but is extremely aggressive :o(
User
Posted 09 Apr 2018 at 18:08

Hi
Tony's psa was only about the same as your dads and he is gleason 9 t3b had spread to the seminal vasculars and was told he had a really aggresive cancer, he is still here 12 years after diagnosis and has been on and off hormones ever since, his psa did go up to over 50 a year or so again bit was put straight back on ht and it was down to 0.1 fairly quickly

regards barbara

User
Posted 15 Apr 2018 at 15:09

Hi,

In my case a bone scan was arranged by my consultant on my first visit after chemotherapy ended. That was to give a “this is where we are now” point.

All the best

Dave

User
Posted 27 May 2018 at 19:00

Dad has now had chemo#4 and 5 and is on medication to reduce his heart rate which is helping. The side effects are unpleasant - loss of taste and ulcers. The hair has thinned considerably but mainly at the sides and back. He experiences quite a few aches and pains but I don’t believe he is taking anything other than Paracetamol at the moment. He gets pretty tired but is still managing short walks round the block. He says he can’t look too far into the future but prefers to take each day as it comes. His PSA was 16 when he started chemo then 14, 9, 6. We don’t have the latest result. It is still like living on a rollecoaster but every day is precious and I feel blessed he is still with us. PenP.

User
Posted 27 May 2018 at 23:26

Hi Pen,

Glad to hear that your dad has tolerated five chemo sessions so far. How many is he scheduled to have?

The side effects are very unpleasant as you say, but I am sure your dad will feel the benefit after he has completed all cycles and has had a bit of post chemo recovery time. This is what I found myself. But I should add a word of caution, the period of benefit may not last very long. In my case it seems to have been about two months, but I guess this is variable depending on the individual.

I know exactly what he means about not looking too far into the future. When I was going through the chemo, I couldn't see any more than about three months into the future. I was feeling so bad that I couldn't see myself surviving the treatment. But survive it I did and as I have said, once I came out of the treatment and recovered, I suddenly felt so much more optimistic, as I still do.

I have almost lost track of my PSA ups and downs over the period of my chemo sessions, but post chemo, my PSA more than doubled from 23 to 53 in those two months. Again, this is likely to vary from individual to individual. So the chemo offered a lot of respite, but it is unlikely to last forever.

I lost most of mu hair about two weeks after staring the first cycle, so I shaved the rest off. It has begun to grow again now though.

I hope your dad continues to improve, but you are right, it is like living on a rollercoaster. Make the most of every minute.

Peter

User
Posted 28 May 2018 at 08:52

Thank you for your reply Peter - much appreciated. Yes I have accepted that post chemo we may not have very long unfortunately until something else needs adding into the mix of treatment. I have also come to terms with the fact that it is very aggressive and he had a very quick relapse post radiotherapy. So for now, we all just try to take a day at a time. i feel very afraid of the future and what it holds but I know I must slow down and think of ways I can enjoy my time with him now. PenP.

User
Posted 28 May 2018 at 15:30

Hi Pen,

That was not exactly the meaning I was hoping to convey. I was trying to show you a possible positive outcome without giving you false hope, which is no good to anyone.

I was speaking entirely from my own experience, I have no, or very little medical knowledge in this area.

As a recap, I was diagnosed T3N1M1 with extensive spread to the bones, some lymph nodes and into my lungs. I was G9 with a PSA of 168. That was in July 2015. I started on Degarelix HT treatment immediately, which worked wonderfully for about 15 months. Then my PSA began to rise again, so I started on Abiraterone alongside the Degarelix. This also worked wonderfully - for about 10 months, which brought me to October 17. That was when I stopped the Abi and started Docetaxel chemotherapy instead.

As I said, going through the chemo was a very unpleasant experience and as I came to the end of it, I still felt very rough. I honestly thought that I was reaching the end of the road. I certainly did not expect to still be alive as of the end of May. But during a conversation with my specialist nurse, I happened to mention that I knew I had only months left to live. She denounced that as nonsense. She said who told you that? (Er ..... actually my onco!). She said you have years in you yet. I did take great encouragement from that, even though I realised that there was a large element of false hope in what she said.

Once I escaped the chemo "hangover", which took a few weeks, I began to feel so much better. I had much more energy, I was "bouncy" again. I generally felt the best I had felt since before my diagnosis. When I saw my onco at the beginning of May, he asked my wife what she had been doing to me! So I had about two and a half months of this well being. It began to wane when I got a severe backache a couple of weeks ago.

So yes, I am beginning to feel bad again, about the same as I did before starting the chemo, but I do believe I have still got a bit of life left in me yet. I do now hope to see another Christmas, something I would never have believed going through last Christmas.

I am sincerely hoping that your dad may find himself in the same boat as I have been and that when he recovers from the chemo, he will feel so much better in himself. Then he may be strong enough to move onto another treatment.

I hope you can see that I am offering a positive view of your dad's future. I do hope he also has "years ahead of him", but just take it one day at a time.

My best wishes to you and your dad

Peter

User
Posted 28 May 2018 at 20:52

Thank you Peter - I send best wishes back to you and your family. I have had professional help in coming to terms with what is happening although it doesn’t make it any easier. I am very very close to my Dad. I dont know if you have read my profile bit but I’ve put it all on there. It’s so gutting that the radiotherapy didn’t ‘get rid’ as we had been led strongly to believe it would. The nurse explained that ‘the horse had already bolted’ and the micro mets were already there. Dad is trying tget get through ten chemo sessions. The staff at the unit are so incredibly amazing. It is certainly a battle isn’t it? I hope you have some good people supporting you. We had a similar grim prognosis from the onco... I think we all need hope. PenP. PS really good to hear from you - thank you.

User
Posted 28 May 2018 at 23:24

Hi Pen,

Yes, I have read your profile. I understand that you are very close to your dad and I am sure that will give him enormous strength through the weeks and months to come.

All I have been trying to say is that you never know what the future may hold and it may not be as bad as you fear. and I sincerely hope that it isn't. But you are wise to prepare for the worst. I know it is a cliche, but I feel it is very true , that we should hope for the best, but prepare for the worst.

RT was never an option in my case, because the cancer had spread too far. They did consider palliative RT on my prostate as part of the Stampede Trial, but I have a history of ulcerative colitis, so my onco felt there was a danger of kicking that off again.  (actually, I think it has anyway, probably as a reaction to the HT)

Ten sessions is a lot, but if he can cope with them all, it will help him a lot afterwards. I was supposed to have ten, but after six cycles, the onco felt that the toxicity of the chemo would outweigh the benefits. Might be worth discussing this with your dad's onco?

Yes, I have a very good support network. I am married and I have two grown children who both live very close to me. My wife has been by my side at every onco appointment, every ct, bone, MRI scan, every HT injection, every GP appointment and she has even been at my side in A&E until 4am (twice!) and back at the hospital visiting me at 2pm. Yes she has been wonderful and so, so supportive. We don't talk about my cancer all that much, but occasionally, it will come up and we will talk for hours about it. Its as if we need to let it build up and then suddenly let it out in one go. It works for us anyway! My son and daughter are always around offering whatever help we need.

One big worry I have is that my wife is slowly but surely losing her sight and she is heavily dependent on me. We have been trying to put things into place to help her after I have gone, but I know it worries her as much as it does me. I do keep trying to persuade her to look into getting a guide dog, but she is very reluctant. Because of her sight loss, she will probably never come on to this forum, but I have asked my son to log on for me if ever I can't do it for myself.

I am also on the community palliative care team's list and the district nurse comes to see me now and again (she is coming tomorrow actually). I was put under the care of the palliative team immediately after diagnosis. It is reassuring that they are available on call any time I need them.

So yes, I have plenty fo quality support.

Well, I am going on a bit ,so I will finish there. As always, I send you and your dad my very best wishes

Peter

User
Posted 29 May 2018 at 17:46

Hi Peter I am sorry to hear about your wife’s sight loss. I understand a guide dog is not for everyone but I board the dogs when they are in training school (they live with me for up to six months evenings and weekends). We have had six full time dogs and three who came for holiday boarding. Of the six, five have qualified and are working guide dogs which we are enormously proud about. Our latest one is guiding for a partially sighted lady who is a teacher. The dogs are incredible and can really make a huge difference. However there is another scheme called My Guide which you may be interested in. This is a trained person who can help a blind or partially sighted person with whatever they would like them to do. It could be going for a coffee, helping with shopping - anything really. There are guide dog centres all over the country. I don't know if you are on Facebook but there is an excellent page for guide dog owners to swap stories which you might find of interest. If you have any questions I’d be happy to help or I can point you in the right direction. 

User
Posted 02 Jul 2018 at 17:57

Dad has now had chemo number 7. The PSA went down from 16 to 4.5 and the last session it is at 5. The oncologist did say he didn’t expect it to go below 4.5 and they were happy for him to continue with a PSA of 5. These PSA numbers can be such a worry. Thank you for reading my update. I still read all the new posts and comment when I feel able to. PenP.

User
Posted 02 Jul 2018 at 18:00
Thinking of you and dad , it’s always good to read peoples updates .

All the best

Debby

 
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