I'm sinking

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On the 11th of June I had 1st colonoscopy,  told then I had cancer, since then I've had CT and MRI scans, and another colonoscopy,  now my files been sent to Manchester, last week, told I wouldn't hear anything for 2 weeks, I've been ok til a few days ago, now my little island isn't just getting smaller, it's sinking.  My 2 main supports are both having a hard time coming to terms with the diagnosis,  which is T2 cancer, through the wall of the bowel, but only 4cm into my bottom, I have no treatment plan, my consultants on holiday, I've spoken to the colorectal nurse, she's been very nice, but I'm starting to crumble and I can't do it in front of my other half as he told the consultant he was terrified, he's my ex husband, current partner, we can't live without each other, but not in the same house, so he lives in the flat below mine, so at least he can escape. He seems to disappear when I have a call back from the colorectal nurses, or the nurse who gave me an exercise plan, I wish he'd stay, in case I forget to ask something, but I know he's crumbling, as is my sister  I have friends, but they're just worried about the outcome, not about how to support me, but I can't do it alone, if I knew a plan I'd be better,  but all I'm doing is reading things and that's not good, as we all know some things out there are horrific. I don't know what to do, I only shed a tear yesterday, bawled into my long haired cat, she didn't mind, well, she didn't bite me anyway! I'm sorry to be a Debbie downer, but I'm sinking and I don't know what to do, the stomach cramps are so bad after I've eaten, I'm down to one meal a day, other half cooks, makes sure I have at least one decent meal a day. I can't even get a call back from my GP, which isn't unusual, but you'd have thought they may have at least called me when I asked for an urgent appt, 2 weeks I have 2 wait for GP. I'm lost, drowning in facts and figures, no treatment plan, and waiting for someone I dont know, to get back to either me or my local hospital to see ufcthy can do the op up my bum, instead of them going through my stomach. I apologise to all those of you who have worse cancer than me, who need support, I thought it may help to get some of it out onto here. I don't really expect anyone to answer, but I do feel a but better to get it out, maybe I should start a journal, 

  • Wow you sound so young! Take that as a compliment though! You're 54 I'll be the BIG 6-0 this November. James is 68 wee bit of an age difference but not much seemed a lot way back when we got together 39 years ago! I was 21 and he was 30 he lied to me though and said he was 26 because he thought I wouldn't go out with him if I knew he was that old but one of his friends `let it slip` about his age and here we are 36 years married. He jokes about blokes doing less time for murderSlight smile. It's not all been plain sailing though and we have had our ups and downs as all couples do but we're good together and would be totally lost without one another and hope it stays that way for years to come. 

  • I thought you were younger too!! I've been with Steve for 28 years, he's 9 years older than me, but he's sensitive, hadn't had many girlfriends when I met him, qnd was quite timid, and came along, I played rugby, had a horse, and have always spoken my mind, he's taken the news badly, we split up for 4 years, and we bicker a lit, so  I live on the flat above his, it's like a house, he's downstairs, we've never been so happy, and he and I have somewhere to get away from each other, when need be. I feel guilty as he's taken it so badly, it's his births in a couple of weeks too, when I ask what he wants he just says "you better" I reassure him, but I'm starting to crumble, but I don't want to cracked just yet, nit in front of him, I had a good cry when I was with my sister yesterday, but she's worried that's it may run in rhe family, as dad's 9 siblings have nearly all had some sort of caner, the 4 women all had beast cancer, his youngest brother had kidney cancer, he died 5 years ago, he was only a few years older than me. I've reassured her the consultant said it's very unlikely she will have it, I told her I needed her to be strong now and support me, she stepped up yesterday. Sounds like you and your husband are made for each other, and I can see by what you write that your a great support to him qnd I know Steve will step up when treatment starts. We don't have a conventional marriage arrangement,  but it works for us, when we split I was visiting him a few times a week, so the whole "own place" is ideal, and I like that I have somewhere to go and cry without me affecting him too much. He's a gentle, sensitive man, I'd be lost without him. Best wishedms to you and your hubby, I hope the chemo doesn't take too much out of him. As I said I'm new to the whole cancer thing, I know nothing about scything, but I'm sure when the ball starts rolling I'll be learning very fast, I just wish the ball would start to roll soon. Take care, big virtual hug xxx

  • Thanks again Miss Tee!

    Your Steve sounds an awful lot like James. James is very quiet, private and keeps himself to himself. He's very friendly though when meeting people for the first time and can be chatty at times but he's nothing like a `party animal` or anything like that. He had a problem with alcohol many years ago long before he met me. He said he couldn't remember weekends at one time. He had a best friend who emigrated to New Zealand and he said if he didn't go he might have died and not been here at all. His friend was a bit of an alcoholic and I think his wife saw this opportunity and decided they were going to New Zealand. James is always telling me stories about the times he used to go to Ullapool in the far north of Scotland most weekends and how the drink would be flowing. He said one time one of his friends who was with him found him in his hotel bedroom lying on top of the bed still and thought he was dead and apparently he had been there for 2 days. Plus the fact he said it was getting to the stage where he was coughing up blood and it was coming out `the other end too` so it was at that time he said enough was enough and he just stopped drinking there and then. He does still drink but not to the extent as he did all those years ago it's `in moderation` now.  He said to me did I think this could be it all catching up with him after all those years that maybe the heavy drinking done something to his insides. He hardly drinks at all now since he got this diagnoses the odd bottle of real ale he'll have but that's about it. He likes Jack Daniels whisky too but has hardly touched that. A neighbour gave him a wee minature set of JD last Christmas and its still lying there. I like gin. That was my son's partner who got me started on that. I was always drinking wine but got a taste for ginGrinning but like James its `in moderation` along with James. Then they say `a little of what you fancy does you good` Take Care. 

    Vicky xx

  • Yes Cancer has hit both our families too a lot over the years. My mum died from bowel cancer 26 years ago but back then they didn't have the technology, research and science they have now that can do so much for the condition. My dad didn't even tell my sister and I what she died with and think thought he was `protecting us` by doing this but eventually my sister found out what she died with and told me. My dad passed away with `metastatic lung cancer`. He just simply refused any kind of treatment because they more or less told him the cancer was right through his body. He was a very heavy smoker though and chain smoked a lot of times. He rolled his own cigarettes with papers and tobacco. Ironically when he went into hospital he stopped smoking altogether and told the doctor this and she said to him `oh that's great, but the damage has already been done`.  James lost his dad to cancer too 26 years ago we don't actually know though what kind it was but we just know it was cancer and then again at that time there was not a lot that could be done for it as can be now. James also lost his brother to oesphegal cancer about 8 years ago. He was 67 just a year younger than James is now so I think this is why I am the way I am just now. Its in my head the age he is and the age his brother passed. His brother's wife passed away 2 years exactly after his brother but she had a lung disorder which wasn't related to cancer. You know that thing the TV  presenter Keith Chegwin died with she had that. and then my sister had breast cancer 3 years ago but they caught that really early and she has been fine since so I'm hoping she has `bucked the trend` and James will be ok too 

  • Gosh, he did like a drink  a bit like ny 1st husband, he played rugby, that's where I got the bug, married him when I was 21, too young, and he was an only child, and he didn't do anything without informing his parents, on Xmas day 1993 he announced we'd be trying for a baby, we'd never discussed it!!! I got out 10 months later, and I'm glad I did, cos I met Steve, he's never been a drinker, the odd shandy, he likes sangria, we have a lot of friends in Mallorca, he went in April, I didn't, too much of a faff with getting into and out of the UK. But has metal detectors and likes to go to the beaches to see what the tourists have lost!! You'd be surprised, he found some Swedish blokes wallet, it had everything in it he needed to travel and his ID for work, he was a prison guard, took Steve 3 hours to track him down! My uncle went to Australia in the 60s, the move to Australia for £10, he did well, had 2 sons, one worked with him in the fishing industry and the other grades diamond's from the mines there. Steve wanted to move there, but I put my foot, down, too damn hot!! Though this winter I've been so cold, I was always the one in a t shirt and cardigan in the snow, now in the heatwave my place was 33c and I was comfy, I wonder if the cancer has anything to do with that? Even now I have pyjamas on, a cardigan and a thick fleece over me, heating is set for 23, I'm cold, Steve says it's boiling!! James sounds like a character, it must be awful to see him going down this path, Steve says he's terrified, won't let me make a cup of tea if he's here, and he makes sure I eat one decent meal a day, but I have the most awful cramps after I've eaten, so I only eat one meal, I may have an ice cream, but the pains so bad I dread eating, hence he makes sure I'm eating lots in the meal I have, no processed food, lots if veggies, I did have a bacon butty today, enjoyed it. I'm having a bit of a stumble again, as I haven't heard from Manchester,  won't hear over the weekend, and my bowels have become very sluggish again, not been since last week, despite the laxatives I'm on, and I know when I do go it'll be horrible, I get waves if sweating and cramps, and to the point if passing out, as soon as I've been I'm OK, but uts been a good month for my bowels, then this last week they've decided to hide. I think I'll be better when I know my treatment, not knowing is worse, at least I can prepare if I know, whether its an op or chemo and radiotherapy. I fell asleep this afternoon,  usually I can't sleep during the day, but I've not been sleeping well, fell asleep on the sofa, woke up and one of my cats was asleep on my shoulder!  She's now eating jiu-jitsu and looking at me, cos she wants some food,not biscuits, she does it to make me feel guilty,  "look mum, I'm so hungry I'm having to rat these hard things that the other cat eats" it works, I get up and feed her. They're very good at listening, and I can have a whole conversation with my Mallorcan rescue, she's very vocal, she is also long haired and is good at mopping up my tears! I hope you have a quiet stress free weekend, sending you and your hubby big virtual hugs. xx

  • Hey MissTee!  

    Good to hear from you. James is the opposite from you and `goes` all the time. Well its into a stoma bag now. It's at least gave him a bit of freedom again last year was awful for him he couldn't walk the length of himself but felt he had to go and sometimes he got so embarrassed if he didn't make it on time. He got the stoma op round about this time last year and the bag is now permanent but he's used to it now and says its part of him now. Then in January he got the tumour operation and 5/6 months down the line unfortunately were back at square one. His appetite is just the same he's always loved his food but unfortunately for long enough he ate the wrong type i.e takeaways junk food etc so its possible this has all caught up with him now. He used to work really unsociable hours too sometimes not coming home at night and sleeping in his work's van. He used to change and build all those big advertising hoardings and boards you see around the place that was what his dad done so he just followed him into it and sometimes he would be working anywhere from Glasgow- where we are to the north of Scotland and down to the North of England  Newcastle- Manchester!! etc. He used to work for a `pittance` though and a lot of his bosses just used him because they knew he would never say `no` to a job. He's dyslexic as well never been officially diagnosed but all the signs are there I never ever noticed it before until I seen his handwriting and its kind of `babyish` and gets his words back to front. He also tried to commit suicide a couple of years ago. It was just after he lost his mum. This was just before he retired in 2019. He didn't tell me and then one night he came in and he did. He had been called into the office in his place something about an advertising board had been put up in the wrong place and it was important that it should have been up in the correct place. He knew he had did it but just didn't care. He was actually `burnt out` because it seemed that he was getting landed with more and more work than the other guys and everything just came to a head. So he told me he was sitting on a quayside in Midlothian near Edinburgh and he had the engine revving up just ready to drive the van off the side when he suddenly slammed on the breaks. He told all this to his boss and all his boss could say he said was. `You go and get yourself sorted out` seemingly in a really cheeky way. James helped this guy set up his business again when his last one went `bust` it was just the both of them at one point working to get his new business off the ground but he forgets all this. Even when James ( I'll say Jay because that's what I call him as does everyone who knows him) retired he didn't even give him a leaving do. All he said to him was `All The Best and just stick the keys to the workshop through the door when you leave. The other guys thought that was really mean and one even went out and got him a bottle of whiskey but he doesn't really drink that apart from Jack Daniels but it was nice of his workmate to do that. Anyway I got him to the GP and he referred him for counselling and that was a great help then the GP gave him an MOT and it found out that he had Type 2 Diabetes but at this time the original tumour was there too which he obviously didn't know about or any of us. So we began working on controlling the diabetes going to the gym a couple of times a week and playing badmintom plus adapting to a healthy eating plan and all was going really well until Covid hit and then everywhere got shut down and the whole country went into lockdown for about 18 months. At the end of 2020 some of the sports centres opened up on a `booking only` system if you wanted to do something you had to book it so we started to go back playing badminton again but this was when all his cancer symptoms started to surface and he just got too ill to be able to do anything as I said it took him all his time to walk to the front door without having to go to the bathroom. So it's not been easy for him since he retired unfortunately they say its a time you start to `wind down` for Jay though it hasn't. This didn't all start after his mum passed though he didn't really feel anything for his mum I know that sounds really sad but he was more for his dad. To this day he still carries his dad's photo in his wallet- but not his mum! He says his mum was more for his brother and what Robert wanted Robert got. If he asked his mum  for something it was always `No` so he would go to his dad and he was only too willing. So another wee bit of `bedtime reading` for you MissTee sorry do you have a `real name`. My name is Vicky but `patty` is from my middle name `Patricia`. Take Care. 

    Vicky xx. 

  • Yes I do have a real name, it's Rosie, Miss Tee is my youngest cats name and TeeTee is my Mallorcan rescue, when it said user name it was the only thing I thought of! James has been through the mill, we seem to have a lot in common, Steve's dyslexic,  I'm the only one that understands his scrawl, even he has problems reading it. He's also been suicidal,  he's OK now, but when he told my consultant he was terrified I have to say I'm worried about him. He's a sensitive man, our 1st Mallircsn recus cat Tia, she died in 2019, he was distraught.  She had a marvelous story, and if someone told me it, I'd say no way, but having it happen to us, well all I can say is she was a very intelligent cat. We 1st saw her outside an apartment block in Mallorca in May of 08, she was a friendly thing, I went each day to feed her and fuss her, then when we went back I  September of 08, we booked to stay I  a friends apartment in that block, as the friend had told us this cat had kittens, so of course I packed a whole load of stuff for her. She was someone's cat, they'd just upped and left her, poor thing, we went and arrived at the appt, saw her, she was having a fuss off someone, so I didn't stop, it was as if she'd suddenly noticed us, she came charging to us squeaking and squealing, so I fed her, then went to unpack. An hour later she was at our door meowing, she'd found us! There were 802 appts, and she found us, as the week went on I found cockroaches, that our friend said she didn't believe, and I then got a chest infection, so we moved to the hotel we usually stay at, around 6 or 7 miles away. We went back 2 or 3 times a day to feed the cat, and her kittens, they were in a room where the laundry was done, and were being fed by the housekeeper, not the best food, but food and water, we found homes with friends for all 4 kitten, took them to the vets, and had their jabs. After the 4th day of going back to feed the cat, we count find her, but we heard that some kids had beaten a feral cat and its kittens to death, around the back of the building. They even let then stay on in the appt, I'd have kicked them out. So we got worried about Tia, we went back to the hotel we'd moved to, we had booked a meal with friends, as I was on the balcony waiting for Steve, I saw this cat stride across a main road and flop down outside the hotel! She'd walked along a very busy road, crossing the side streets that had roundabouts on them. So we decided to bring her home, it took us 10 months and £2500, but she came to us, and was treated like a queen, she and Steve had a strong bond, so when she died he was distraught, and kept saying he should be with her. Anyway, he got over it, and he has a rescue cat, he got her through cats protection, she's a sweet thing, she loves her fusses, and she gives you kisses, whether you want them or not, she will literally pin you down and lick your face!! I digress, can you tell I'm a cat lover?!!! I love all animals, but cats are easier than dogs to look after, I had 2 cocker spaniels, loved them to bits, but after all my spinal ops, I found it difficult to walk them, so when they passed, we had kittens.  I had a bad night, again, I went to bed feeling queasy,  and had some cramping, I fell asleep about 2am,  woke in horrible pain at 3am and sat on the loo sweating, with cramps, I felt as though I would pass out, which isn't new, it's been like this for months, I had to strain, but eventually at 5am my bowels moved, I couldn't sleep after even though I was so tired. I take 2 senna at night, 2 docusate at night and in the morning, and have the sachets for when I get constipated, I can have 8 of those a day, I usually have 2 a day, and I've found if I eat 2 Muller corner yoghurts twice a day, so 4 a day,  that usually helps me, but my bowels have been sluggish even as a kid. My parents drank a lot and we didn't have the best food for kids, but I was at my great aunt on weekends and school holidays, she was more of a mum to me, she lived in at an old people's home that was run by the council, Cheshire, it was a massive place, with bug gardens, I had a whale of a time as a kid. It's since been turned into apartments, such a shame, it's got pictures on the Web of the place, and I found when I was doing my family tree that the person who built it was a great, great, great, great uncle, I think it's that many greats, if not for my aunt, I dread to think where I'd have ended up, we lived on a rough estate, both my brothers have been in prison, stealing and violence, they learned and have not been in jail since, my younger brother was always depressed, he drank and his wife and kids left him, so he thought he'd try to hang himself, that worked she came back, they split again, but she didn't go back and he threw himself under a train 12 years ago, my older brother is sort of sorted, he's married, for the second time, he drinks a lot, but he's OK. Me and my sister went to auntie Elsie's a lot, so we escaped the worst and I got out of the estate as soon as I was able, got a flat with a friend, I don't drink much, I like the odd gin and tonic, I make flavoured vodka, buy the vodka add sugar and fruit, depending on what people want, summer fruits, cherry, peach and apricot. I make them as Xmas gifts, and someone always asks me to do some for the summer punch bowls. I've no children, but I have lots of nephews, a niece and lots of great niece's, which makes me feel old!! I used to manage a bed and bedroom furniture shop, loved it. Steve was in the RSPCA, he's retired, he's 64 in 11 days, and says he just wants me better, so I'm going to take him for afternoon tea somewhere I think, he likes his cakes, he's just bought a piece of land up the road from us, nearly an acre, he's put a cabin on it, there's some woodland, there's a lit of people who have allotments up there,  but he found the person who owned this big lumps and git ut, there's a bit of a wood up there, he's built an enclosure for the cats, his cat Dotty loves it. He made a lot of friends uo there, as he's been buildibgvthe cabin, clearing some of the trees so his solar power works better, he grows fruit and veg, so it keeps him busy. He sleeps up there on the on occasion, it's lovely, quiet and youd never know you were so close to the town centre. My 2, they hide in the cabin, they've always been indoor cats, scared of their shadows, I only Got Miss Tee as when I went out, which was that often, TeeTee howled and had separation anxiety,  so I got her a kitten, they're the best of friends, they wrestle and chase round, its lively and entertaining. I find I forget I have cancer, whenever I watch them, but then it seeps back in. It's a strange feeling, I have dreams of snakes and worms in my inside, and I feel, well, almost dirty,  I don't know if that's because of where the tumor is, just 4cm inside my bottom, I don't know why. The old people's home had people who had stomas, even as a kid of 3 and 4 I was running around Gawsworth New Hall, not the old hall of the same name, helping staff to make beds, when I got to 8 I used to take the morning coffee and afternoon tea trolly around, it was a massive place, there were around 45 to 50 residents. I still love nearby, and my aunts friend Joan, they did everything together, holidays work, they ate to gether, lived in a row of 5 old cottages, Joan's still there, my aunt was next door but 1 to her, I take Joan out every Wednesday for a ride in the countryside, for 2 hours we laugh and reminisce about "the hall" as we called it. She was a farmer until she was 43, a council farm not far from the hall, it was her parents, they passed when she was in her 30s, she's never married, she met my aunt when they moved to the cottages, and both her and my aunt have been in my life since I was a kid, their influence has kept me pulled together and always working and helping people, my aunt passed in 2004, and people thought I'd stop seeing Joan, and are surprised we still have a strong bond. My parents weren't  nice people, and I don't feel guilty saying that, my mother was a manipulative person, and when I said I was going to uni, she said, no you work and pay board, I was 16, went to work in sewing factory, I enjoyed it, great people, but the work was never ending, it was piece work, so you has so many minutes to do a certain part if a garden, a hem, or a side seam zips, buttons, so hard work if you wanted to take home a decent pay packet, she had £20 a week for board, I started earning just £40 and by Sunday, she wanted to "borrow" money for them to go out with my father, he was a nasty man, handy with his fists, I got a punch in rhe face on my 18th birthday, long story, but no real reason. He died suddenly in 94, he was 45, in 98 I had a row with my mum, never spoke to her after, no great loss. So I have Steve and my sister, Joan, she's 87, so I don't like to burden her too much. I have a few friends,  but they either don't want to talk about it, or keep saying it's all gonna be ok, I don't think they understand the impact the word "cancer" has, I know it's no longer the death sentence it once was, but its still a big thing, and it's impacted me quite hard, I don't even think it's really sank in yet, but I've realised, by joining the group that I know absolutely nothing about cancer and the impact it has on people and their family and friends, I don't know about chemo or radiotherapy,  I don't know much about either of the 2 operations they may do, I don't know the difference between the ileostomy or stoma, I'm a total newbie and it's just a lot to take in, I thought that I'd covered most questions with my consultant,  but I think of more each day, I don't want to keep hounding the colerectal nurse, as she's got other people who are going through all stages and I don't like to pester. I don't want to be a burden people close to me, I don't want to upset everyone by breaking down in tears, Steve's just said that his worlds turned upside down and that things are a blur and he doesn't know how to cope, I ended up reassuring him that I'll be ok, and there's so much treatment out there, so I'll be fine. Inside I was screaming that I need him to step up for me, as it's started to sink in and the sharks are circling my island, which is getting smaller. I don't know what questions to ask about chemo or radiotherapy,  do I have an input about which operation I'd like done, rather than them just going in guns blazing, I don't know anything about side effects of chemo, is it done in hospital, a friend had to go to Manchester every 2 weeks to have a drip with chemo in. We've just had a new Christie's hospital built on our local hospital,  but now I've been referred to Manchester, I'm lost,  I don't know anything apart from I have a tumor that's 35mm and is 4cm inside my bum. I may need a big op, if they can't do the op locally, but that means a permanent stoma, the big op through the stomach could give me a 40% chance of the stoma not being permanent. The fact I will have a stoma, whether permanent or not, doesn't really bother me, it's whether it will come back if they miss some, which operation would give the better chance of it not coming back? I live in Macclesfield in Cheshire. There are support groups locally that i could join, and do reflexology and shoulders and neck massage, my sister says she will come with me, as Steve won't, he said he doesn't need support, he just needs me well again. I can't push him into going, he has friends who he talks to, so hopefully they are supporting him. Big virtual hugs to you and James. Hope the car trouble isn't so stressful now. Take care, sorry for the waffling and please feel free to waffle at me, it certainly helps me, and I know that I haven't a clue about any treatment, but I can imagine how you feel, as I can see how it's affecting people around me. You and James have a strong bond, you'll both get through it, and I hope that it's sorted with this chemo, so feel free to contact me, I will always answer, it may not be straight away, but I'll never ignore your messages, as it helps me a lot. Virtual hugs and kissed Rosie xx I just got the box saying that a word I used may mean I need to talk to the samaritans, I think it's when I spike about Steve being suicidal,  I was just trying to send this reply.  I'm not suicidal,  I'm just lost xx

  • Wow! What a story! 

    Seems we're similar in a lot of ways!  I like cats but I'm not really a cat person. We have a dog a wee Border Terrier called `Jack` named after `Jack Sparrow` in Pirates of The Carribean Jay's (James) favourite films. We also had a beautiful long haired German Shepherd called `Max` but at 13 years of age 2 years ago we had to put him to sleep. His back end just gave way and the vet said that the muscles had just all wasted away and there was not a lot that could be done for him. It was at the height of Covid as well so we weren't even allowed to go inside the Vet's Practice to say `goodbye` and just had to do it at the front door then they took him away. It broke my heart terribly.  He was our 2nd Shepherd our first one `Blade` was gifted to us by our downstairs neighbour. who was emigrating she was going to put him into a rescue centre but we said we would take him because we knew him so well. You could never have met a more intelligent dog and he done everything but sit and have a conversation with you and I think if that were possible he would have. One day Jay told him to sit down in our wee bit of garden we have at the back and he came up the stairs and after a while noticed Blade wasn't there. He had actually still been sitting were Jay told him to and never budged until he shouted on him. We only had him for a short time though and had to put him to sleep. Ironically he developed liver cancer which the vet said was spreading so we took the heart breaking decision to let him go at 5 years old. That hit Jay really hard because he had really bonded with Blade and he said he had never felt that way about a dog before but there was just something about him. He always kept dogs all through his life he said and when it was time to have to put them to sleep he never really felt anything but with Blade it was something different. Then we got Max who was `daft as a brush` but we loved him just the same. We got Jack when Max was about 8 or 9 years old. He was a joint Christmas present to Jay from William and I he'd been going on and on about how he would like to get one and as he is one of those people so hard to buy for I suggested to William that we get the terrier for his dad's Christmas so that's what we did and he was so delighted. Max took to him ok it was so cute at the beginning when Jack was a pup because Max had this big bushy tail and when the two went to sleep Jack would snuggle right into it and Max would never flinch once. It was as if he was his `big brother` and he was looking after him. Funny you mention about asking Steve what he wants for his birthday and he said `you better` that's what I said to Jay. He asked me what I wanted for my 60th birthday and I just said `you`.  I just can't comprehend thinking about anything like that at the moment can really think of doing anything just now. We got a letter yesterday to say that his oncology appointment for the 11th August has now been put back to the 18th. We now don't know if his chemo will start on the 12th because this appointment I think was just to go over everything with him again before the chemo started so it means now I will need to phone the hospital to find out if the date for the chemo starting is still going ahead of if that will be put back too. Yes i'm finding it really hard too to tell people about Jay and he doesn't want me telling anyone other than direct family. For a while and it still happens I'm actually scared of stepping outside my front door incase I bump into a neighbour and they ask how he is and I start `blubbing` like and idiot because everyone knows he got rid of the cancer the first time. Think we got a wee bit too complacent there and never thought it would resurface as soon as it did. But then I suppose you never know with these things and I'm just thinking maybe it's a good thing because they found it again and can get on top of it again hopefully. The way his oncologist spoke he said that it is there but not as invasive as they thought. Its in or on his bowel membranes he said don't really know what that means. The surgeon and the colorectoral nurse when we met with them told us that it was showing in his pelvis but the oncologist said there is some `scarring` there due to him having a slight infection after his operation. When he was in getting that done he had to stay in  a little bit longer in hospital because he took an infection and they had to put a drain in to get whatever was causing the infection out. It's turned out he has scarring on one or both of his kidneys as well and he has a consultation with a urologist as well and that will be a telephone consultation that will be the day before he was supposed to go to see the oncologist on the 11th. Hate when they do that and change appointments my mind immediately went into overdrive and I started imagining all sorts. There's a lady that comes on here called `court` she lives in Glasgow too I think the west end she is and she said its a possibility due to staff shortages in the NHS and holiday leave at this time of year they may not be able to fit him in plus Covid is still doing the rounds so all this sounds really logical and you never think of things like that. Just the way things are at the minute you immediately think the obvious that there's something wrong and this is how they have changed the appointment. I just hope that they will start Jay with his chemo when they said and this is not the start of it getting put back and back all the time. As well as all this I have a condition called Tuberous Sclerosis (google it) basically it causes epilepsy, learning difficulties, facial rash (looks like acne but isn't it's permanent) and flesh like growths on finger and toenail beds and can cause lesions (tubers) on the brain and kidneys and can affect the heart and lungs also. I've had this since I was a baby. I had epilepsy when I was younger but it left me when I was about 19 or 20 years old. My older sister Margaret has it too- it's genetic my mum was the carrier as was her mother before her (my gran). Margaret was an identical twin and her sister Ann died from a brain tumour aged just 17. One of my uncles on my mum's side had twins too and one of his son's died also from a brain abnormality so don't know if its connected. Anyway I went for all the tests when I was younger and it's shown I have the tubers in my brain they just sit there and do nothing so they're not keen to do anything about it `if it aint broke don't fix it` as they say and I have very small miniscule tubers on my kidneys but again they're not causing any harm. I just get regular scans every couple of years to make sure I'm ok. There is no cure for this it's one of those life long things you just live with. My sister has mild learning difficulties and lives in sheltered accomodation. She is 71 but acts like someone a lot younger than she is I don't  mean a teenager but like someone who is just not in their 70's. She lived with my dad up until he passed 10 years ago and she felt quite vulnerable in the flat she lived in with him so I managed to get her into sheltered housing and there is a live in warden there. She can be independent to an extent but needs me for a lot things too. She can't get money for herself because she can't work a cash machine my dad tried to show her and so did I but it just didn't sink in and she feels vulnerable going into a bank and asking to withdraw money over the counter but I think a lot of people are like that these days it's a bit intimidating walking out of a bank with a wad of cash in your hand. Anything in authority she gets stuck with and she needs me for that my dad did all that for her too. It could be a little thing like paying her gas bill or similar but I managed to get all her utility bills paid on direct debit so she doesn't need to handle cash or anything for those and her pension goes into the bank too. I'll order her shopping online for her as well so really she doesn't have a lot to do because `wee sis` does it all for her now. Sometimes it feels  like role reversal I'm the big sister and she's the younger one. I'm just worrying because I need to focus more on Jay these days and part of Margarets illness is that she can be `attention seeking`.  If she thinks no one is bothering with her she will make up stories of things happening in her housing complex. A couple of weeks ago it was a woman and man were going round trying to break into the houses and her next door neighbour was getting her door knocked on at 2 in the morning and for a long time she said a man was playing loud music in the complex because he wanted her house and this was him getting back at her and we found out that this man passed away 2 years ago. She insisted that he was waiting for her coming in from being out somewhere and the music would start. She at one time threatened suicide (I'm going to get that wee box now) she said that if no one beleived her then she `may as well not be here` but half the things she said just weren't happening because I took it up with the warden and Jay and I even went along there one night in the car (she is within walking distance from me) and we sat for a little while and honestly it was that quiet you could hear a pin drop. Margaret did try to commit suicide one time years ago. I think though it was just after we lost Ann I was only about 6 or 7 years old at the time and I came home from school one day we lived in a top floor tenement flat and I remember I went into the house and heard her shouting and I went into one of the bedrooms and she was standing on the outside window ledge ready to jump. I think I screamed the place down when I saw her and I think just at that time my mum came in from work and managed to pull her back in. Oh dear im so sorry you'll wonder what type of family i'm from we all don't try to commit suicide- really!  So my mum and dad had to try to get her into a specialist hospital here in Glasgow and even then that was an ordeal she wouldn't let my mum leave the house somedays. My mum had to go to work and she used to pull chairs up to the doors to stop her leaving because she was convinced  she was going to go to get someone to come and get her to take her in somewhere and she was refusing to go. She always had to have two single beds in her room too because she used to say `that's Ann's bed` she did- well being an identical twin- take it very very hard at losing Ann. So when she said to me that time `I might as well not be here` the alarm bells started to ring again and I got her to the GP who referred her to a mental health team. She had a nurse come out to visit her every so often but again because of covid that stopped. Her hearing in one ear is not so great either so we took her to get a hearing aid but she won't even put it in. Jay got quite annoyed at that and said she wasted NHS time because there will be someone out there who really needs a hearing aid we think again its an attention thing because she can hear fine. I be sitting one day and she'll did I hear you say such and such maybe something that happened a week ago or something and Jay will say nothing wrong with her hearing now. So she knows what's happening with Jay but we just don't know how much she has taken in. Wee things upset her too like if the date disappears from her phone or something doesn't come on her TV she phones me about it. She lost a set of keys one time and said someone stole them then tried to say the warden found them and kept them. She has a habit of carrying keys about with her she doesn't need to and she's a one for carrying carrier bags with her and they get to the stage they get holes in them and she will put the keys down to the bottom of them and this is how they get lost. These keys she lost had a key for a cupboard in her house she constantly kept locked because it had her medication and money in it even though she is the only one in her flat. So this resulted in the cupboard door having to be burst open as it was locked and there was no key. Now she goes on and on and on about getting this cupboard door fixed and I tell her maybe if she didn't take the key out with her it wouldn't need fixed. Nothing was getting done during the pandemic but they don't look on that as a priority repair and when she goes out she says to me will it be alright to go out and leave the house with that cupboard door still unlocked. I just worry she'll think I'm ignoring her once Jay starts this chemo as I will need to put a lot of focus on to him. I've told her not to start with her nonsense because I'll likely jump down her throat or do something I'll regret so I just hope I got the message through. These wee things are sent to try us. Well another wee bit of bedtime reading for you. Take Care.

    Vicky xx

  • Never apologise for how you feel. I honestly don’t think anyone sails through this unscathed. I coped pretty well when diagnosed with bowel cancer three years ago. The hardest part for me was the waiting. Once I had my treatment plan it was a case of let’s do this! Sounds a bit flippant, but it was the only way I could deal with it. Now I’ve been told that all the time I thought I was cancer free, it has been growing in my liver. I thought if I went to check out the hospital who may be doing my liver resection that I’d feel better. Unfortunately, I was in such a state that I managed to lose my purse! Fingers crossed the man who picked it up will hand it into his local police station this morning. Give yourself some time to come to terms with all of this. You will come through this a changed person without a doubt. Keep in touch with everyone in here. The community have a wealth of experience and knowledge, and offloading really helps. Sending you lots of hugs.

  • Thanks jools63, I'm hoping I hear something from Manchester this week, but ky consultant isn't back until next week, it's the waiting for the treatment plan that's getting to me, if I had that, I'd have something to focus on and get ready for, I don't know if it's going to be an op or chemo and radiotherapy,  my consultant didn't discuss chemo and radiotherapy with me, but in the letter he sent to my gp it mentioned as a part of treatment. So until he is back I'm vaginally stabbing in the dark. I've found out that I know nothing about cancer and how it impacts you and people around you. I'm doing OK for now, Pattyk is keeping my mind off thins and I'm getting to know her journey with her husband, it helps me a lot and I'm also trying not to look at anything on the Web, I did when I first found out, and it scared me silly, so I gave up. I'm not sure what questions I should be asking my consultant,  or even if my input into which op I'm having. Thank you for taking the time to reply, I hope you get your purse back. Take care x Rosie

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