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Making the most of it

User
Posted 27 Nov 2018 at 00:13

I know Lynn, I googled it just for jokes after we'd stayed there...then in our typical way we ummed and aaahed over whether to splash out. Then a few weeks ago on a particularly s**t day I ordered one.

Our motto for frivolous purchases is:

"Chuck it in the f**k it bucket"

We are cautious spenders by nature so its a little nerve wracking when I press the "complete" button on large amounts of money. I usually have to eat some chocolate or drink wine to settle my nerves😄

User
Posted 27 Nov 2018 at 00:57
You see, this is the problem - I am tee total so I just spend the money without any kind of props needed.

Having said that, my family are very proud of me for giving up smoking last February so I haven't the heart to tell them that I started again :-/

Seriously, next time he has a bad phase, make sure that the nurses come out to visit - the last thing he needs is bed sores. When I kidnapped mum from the hospice, Social Services had to bring a proper medical bed to the house with all the lifting & tilting facilities so that she didn't get sore - it is a statutory responsibility in terminal care cases, I think?

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

User
Posted 27 Nov 2018 at 09:55

I will do that.

Already managed a bath this morning :) just now is eating a slice of jam on toast. Hasn't taken metoclopromide since yesterday lunch time but has taken an omeprozole this morning as the burping/indigestion is horrible.

I've been thinking about the bed, oh has said he wants to go to the hospice for end of life care but he may well be bed bound before that happens. I think we could fit a bed in our living room otherwise it'll just be an additional pressure pad put on our own bed.

At what point is it decided that the hospice is the place to be and who decides?

I gave up smoking 11 years ago when I lost my dad to lung cancer and his specialist told me that I would very likely develop it myself if I carried on. My brother on the other hand has stopped and started over and over again. I still get a whiff now and again and think I really want that "aaah" moment that came with lighting up! 

I don't drink heavily but I wish I could leave the chocolate alone😈

User
Posted 27 Nov 2018 at 11:05

Originally Posted by: Online Community Member
You can buy the mattresses that premier inn use????

By Appointment to Her Majesty no less.  The bed outlets in Redbrick in Batley used to sell them at eye watering prices - £5,000+ - but they were very nice to lay on.  The one we slept on at Premier Inn a month ago must have been well road tested as it was a bit lumpy.......fortunately no stains though..... https://community.prostatecanceruk.org/Scripts/tinymce/plugins/emoticons/img/smiley-wink.gif

User
Posted 27 Nov 2018 at 13:18

£565 for a king-size Hypnos mattress only. Mine with the new map of Tasmania on it might need replacing, but I could always turn it round to Her Loveliness’s side and blame her.

Or turn it upside down and pretend nothing ever happened!

Cheers, John

Edited by member 27 Nov 2018 at 14:12  | Reason: Not specified

User
Posted 27 Nov 2018 at 15:28

Haha you two, "map of Tasmania", I've arranged for the old one to be taken away when they bring the new (extra cost), I'm too embarrassed by the state of it to leave it outside for the council to take away....the shame and all the neighbours will see!!

I have also purchased a waterproof mattress protector to keep it nice...I can't believe how excited I am about it 😄

 

User
Posted 05 Dec 2018 at 17:19

Update: Urology appointment today for follow up from TURP. Results say he has 5+5 acinar adenocarcinoma, I asked if they had found small cell, the urologist looked at the report and said there was no mention of it.(he didn't do the op)
So, yay, it's very aggressive but it's not small cell.

Oh is enthused by this news, he's felt so sh*t he thought he was literally dying.
Urologist said the pain on urinating and emptying his bowels should improve with time as the surgeon spent 60 mins burning tissue and this is a lot.

A little bit of me feels that this isn't right but can prostate cancer be this aggressive without being small cell?

Urologist didn't have anything else to say other than the cancer had grown into the bladder and the report said the kidneys were difficult to see.

Edit: 

OH has eaten more these past 3 days and we made it out to homebase to buy a Christmas tree.  Each day is just a little better than the last. Tomorrow we are wrapping presents. I am able to enjoy the little things we do together but I am struggling with the impending sense of doom I've been feeling since summer.  I am relieved that they didn't find small cell but I am still worried, I hope that makes sense.

 

Edited by member 05 Dec 2018 at 18:05  | Reason: Added comment

User
Posted 05 Dec 2018 at 19:27

I can't help with your technical questions, so sorry about that.  The rest of your post is positive though and it seems that OH is improving each day, albeit slowly but in the right direction.  That's going to help for the upcoming holiday, I'm sure.

I'd love to see his face when he unwraps the mattress protector on Xmas Day......

Stay strong! 

User
Posted 05 Dec 2018 at 21:41

Mr Angry,

I've bashed out an email to the oncologist with a list of questions that I don't feel could be answered by the urologist, so hopefully some technical answers from there.

Yes, each day is a little better, I didn't like to tempt fate by rejoicing the fact we'd been to homebase and then be dealt another dose of something nasty.  

The mattress is Awesome,  it does nothing to encourage me out of bed in the morning. The mattress protector is already on, it's nothing like the crinkly plastic of my childhood😂. 

We would normally spend Christmas with family (25 of us) in Sussex but oh doesn't want to travel, he's still passing clots and the urologist doesn't think this will change. If he goes into retention again he wants to be at home. So we are spending Christmas at home, I'm so lucky to have such a kind family, they've offered to come to us with food at a moments notice if oh feels well enough. Or they will just visit, whatever oh wants to do.

Thanks for the support 😊

User
Posted 05 Dec 2018 at 22:22
Even within adenocarcinoma, there are tigers and pussycats. Much of the research spend currently is on a) trying to work out why some are tigers while others are pussycats and b) trying to find a way to identify which is which.

Christmas and the mattress both sound lovely. An advert flashed up on my FB account today or the John Lewis top-of-the-range mattress which is priced at a smooth £18,000 !

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

User
Posted 05 Dec 2018 at 23:43

https://community.prostatecanceruk.org/Scripts/tinymce/plugins/emoticons/img/smiley-surprised.gif how much!

I'd want the thing to put me to bed, massage me and turn off the light for that kind of moneyhttps://community.prostatecanceruk.org/Scripts/tinymce/plugins/emoticons/img/smiley-surprised.gif

Oh has definitely got a tiger. I want to know as much as possible for our son's benefit, and oh's 7 brothers and their sons etc.  How do we go about the genetic testing I've read about? Oh's mum died of breast cancer before she was 50 and oh's dad died of prostate cancer in his late 60's. I'm not sure what to ask or who?

User
Posted 06 Dec 2018 at 00:56
I think I would want a bit more than that 🤭
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 06 Dec 2018 at 01:11
I am currently on a genetic testing programme via the Royal Marsden Hospital for PCa, but I don’t think I will be of much help to them as there is no family history of PCa as far as I know and I have no siblings - you all knew I am an only child, didn’t you?

It involves a lengthy familial questionnaire and saliva sample for DNA testing.

Cheers, John.

User
Posted 06 Dec 2018 at 09:22

Thanks John, did you initiate that or your oncologist? 

Lynn, hahaha

User
Posted 06 Dec 2018 at 09:49
I went to see the No. 1 specialist prostate oncologist at the Royal Marsden Hospital (although I am ‘cured’) on the NHS to discuss further steps should I suffer biochemical recurrence.

He nominated me for the genetic survey, which of course, I am more than happy to participate in.

Someone from somewhere else is phoning me tomorrow about PCa, can’t remember if it’s a survey from the Royal Surrey County Hospital where I had surgery or from PCUK. I have suddenly become very popular!

Cheers, John

User
Posted 06 Dec 2018 at 09:52

Thanks John, I shall find the contact details for No. 1 and ask. 😊

User
Posted 06 Dec 2018 at 16:32
Your OH can ask your GP for a referral for genetic counselling. They will take a full medical history for him and any known history for relatives, and they will also ask about the areas where he and his family lived and worked, what the wage earners did for a living, etc. They will probably also spell out in detail the pros and cons of going ahead with the test and then send him away to think about it.

We have a brain tumour in the family so I was referred for genetic counselling. By the time we had done two appointments, they had completely convinced me that genetic testing was a bad idea. Apart from anything else, there might have been unintended consequences for my children, such as not being able to get a mortgage when they grew up, not being able to get affordable life insurance, and the emotional impact for them if we found out that I had it. Direct impact for me included possibly not being able to move house in the future unless I could buy without a mortgage. They also explained that it was much more likely to be environmental - my wider family almost all lived in the same few streets, drank the same water, cooked similar food in similar ways (most significant, the use of the same chip pan for many years and not necessarily changing the chip fat very often), breathed the same air from the same pits and shipyards.

It is similar for prostate cancer. Only a small percentage are thought to be truly hereditary (5%), most commonly BRCA 2 at less than 1% of all prostate cancers. If a family carries BRCA then it would usually be seen as breast cancers in 30 year olds, metastatic prostate cancer under the age of 50, ovarian cancer, male breast cancer, pancreatic cancer and cases of childhood leukemia. There are other gene faults such as HOX which are more common than BRCA but have no relationship with breast or other cancers apart from prostate.

Vast majority of prostate cancers are thought to be environmental - drinking water with added chemicals, consuming foods that have had hormones added, plastics in our diet (cling film, drinking out of old plastic bottles that have been left in sunlight, that kind of thing), consuming a lot of processed food. And that makes sense in my head, at least; traditionally, a mother would cook for her sons the same food that she cooked for her husband, in the same pans and possibly that would be the same food that her mother-in-law had cooked before her. When I asked our uro about the risk to our son, he said the best thing we could do was change his diet - get him into a prostate friendly way of living while he is still young. He also said that if society could change the way small children eat now, prostate cancer could almost be eradicated in one generation.

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

User
Posted 06 Dec 2018 at 17:58

Wow Lynn, thank you.  I think the most convincing thing there to not have it done is the future financial impact. Neither oh or I could afford critical illness policies because of our parent's cancers so we opted for terminal illness cover/death. We didn't have any trouble getting a mortgage though!

I worry that oh may carry the BRCA gene and dear Daughter is at risk also. Oh's recollection of his mother is that she possibly had breast cancer earlier and was in remission for some time. He was young and doesn't remember accurately. I can encourage her to check herself regularly and to visit gp at any sign something might be wrong, the same with Son. Raising their awareness to look after themselves well and to be insistent if there's something wrong. I don't want them to turn into hypochondriacs though!

I had thought about the impact emotionally on son of knowing the liklihood of developing Pca, and I didn't know a lot of pca is down to environment. We eat very differently from how oh was brought up and have always veered on the low dairy/red meat side. Lots of vegetables in our house. It is a battle to keep the little bu**er out of the Golden Arches though. I have been drip feeding the dietary information to Son for a couple of months but I don't want to come across as a nag, teenagers dig their heels in don't they?

Although we're estranged from the 7 brothers, oh did contact one on diagnosis to pass the info on to the others to go and get themselves checked out. He said he'd feel guilty if he didn't.  I get that.

I emailed the RM earlier to inquire, if they just add his genetic profile to a database it will help somebody somewhere down the line, probably. We don't have to pursue it from this end and get the kids tested. I know what it feels like to worry about whether you have cancer, my father's onco said both my brother and I were likely to develop lung cancer as we had smoked, my father and 4 of his brothers have died from lung cancer, one at 31, the rest in their early 50's. I spent a lot of time worrying in the first few years after his death, now it crosses my mind occasionally and I think; I've done my best to reduce the risk there isn't anything else I can do other than look after myself.

I'm glad you posted that Lynn, it's easy to get wrapped up in something as a distraction from what's happening, I think it's called "going down a rabbit hole" isn't it.

Xx

User
Posted 10 Dec 2018 at 23:02

7/10/18: Sodium 128, Hb 98.

Oh is pleased the sodium is on the rise and is going to try the desmopressin again tomorrow. Fingers crossed this was not why he was sick a couple of weeks ago and that it will be effective in maintaining his sodium levels.

Hb down a little but not as awful as it could be.

We went a nephews 5th birthday lunch and later in the evening to a party/disco on Saturday. Oh managed 2 hours at the lunch and 3 hours out in the evening! 

He's staying up for longer stretches and is managing pain with paracetamol. He's totally fed up with the pooing pain but says today it was a 9 rather than a 10.

Some family visited tonight and we had take away Chinese,  which oh tucked into with enthusiasm,  that should improve the  sodium by at least two points!

Tomorrow he plans to visit work (I'm driving ) and distribute gifts to his managers to say thank you for how supportive they have been.

And we wrapped some presents and wrote some cards. In the grand scheme of things, not a lot but to us, these are massive improvements/achievements. 

Katie xx

 

User
Posted 11 Dec 2018 at 00:01
Fantastic news xxx
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

 
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