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Peritoneal cancer

Affected by peritoneal cancer? Join this group to share experiences and ask questions to people who understand what you're going through.

looking for buddies in Leeds area with peritoneal cancer

photohappy
Posted by

Hi all

I am nearly 4 weeks post debulking surgery an am looking for buddies in the same situation as me. I haven’t really talked much about my  illness, but i feel now is a good time. I f theres anyone local to me who would like a ‘cancer buddy’ please get in touch. x

latchbrook
Posted by

Hi

I agree that talking about your illness can really help you come to terms with it as well as giving you the opportunity to find out how others have coped.

Unfortunately it doesn't look like there is anyone from Leeds in this group but I'm sure the others would be happy to chat to you if you started another post that wasn't so specific about who you wanted to hear from.

No matter where in the country, or world, they come from everyone will understand what you're going through and will be willing to give you support.

x

 "Never regret a day in your life, good days give you happiness, bad days give you experience"

What is a Community Champion?

Sam-1818
Posted by

Hi 

I live near York do not too far from you? I’ve just been diagnosed with PPC. I’m scared stiff and have acities building up which makes me feel terribly uncomfortable. I posted on the site for some help from people but, haven’t anything as yet? 
it’s such a lonely time ... my family are amazing but I nee them to carry on with their own lives. I’m battling this by myself I don’t have a partner either so finances are worrying me. I’ve not worked for one month so far and haven’t received a penny from any benefits. 

photohappy
Posted by

Hi,

so sorry to hear your fighting PPC, Yes I also posted on the site but got no replies- you’re the first one! It’s such a frightening experience to go through, but I have now finally finished my chemo, and am on 3 weekly treatment, and I now feel well. I have been to see my boss today and go back to work on 1st March. I also had 12 litres of fluid drained from me, I could no longer eat or go to the toilet, but once it’s drained then you do start to feel better. I had surgery and I was back home in a week. and gradually got better and better, but I did find the chemo was the worse for me but everyone is different, pls tell me a little about yourself, and if I can will support you through it ( if you want) stay strong.

Sam-1818
Posted by

Hi (sorry I don’t know your name? I’m Sam) 

Thank you so much for replying to my message I cannot tell you how lovely it was to receive a message. I had my stomach drained and felt so much better but, it’s now building back up so, I have the annoying cough, zero toilet situation and eating is a distant memory ... getting comfortable in bed is impossible too. 
it’s great to hear you feel well enough to go back to work! I cannot even imagine doing that. I hobble around at home and potter doing odd jobs but that is it. I feel so weak, sick and shaky. 
A bit about me, I’m 51, a nurse, mum to three boys and the owner of a nutty dog called a Douglas. I was working up until Christmas and the only symptom I had was bloating which, as a nurse I thought it was just irritable bowel. When it didn’t go away I decided to visit my GP she took my CA125 which is a marker for ovarian cancer and it came back just under 5000! I found this out on New Year’s Eve. 
Since then, it’s been appointments for tests and scans etc. I start chemotherapy on the 12th but, will need this fluid draining again no doubt.

Id like to know a bit more about you too. It would be great if we can stay in touch because despite being a nurse I’m unaware of anything to do with this and feel scared. At the moment my problem is this fluid but, I’m sure there will be other issues along the way (all of it horrible and I wish I didn’t have to face) This has come as a complete shock as I’ve always been extremely healthy and there is only my dad who’s had prostrate cancer in the whole of our family. 
looking forward to hearing back from you 

Sam x 

photohappy
Posted by

Hi Sam, ( I’m Ann by the way)

I thought my Ca125 was bad enough @ just over 3000!, it does go down by the way. It is very frightening as you don’t get much information from the hospital and pls don’t look online ( you will do though, as it’s just the natural thing to do)

Mine started a year ago, just feeling really exhausted for a few months, then started to get bloated, couldn’t sleep as I couldn’t turn over, then I had bad night sweats, by the time my GP referred me to the ACE team @Jimmys I was really ill. I couldn’t walk (ended up in a wheelchair for 6 months) The chemo worked as they expected, and I had surgery ( you might not need it) and from then on gradually started to feel better ( there’s lots more but don’t want to bombard you will all the info and stuff) Just think no matter how bad you feel now - you will feel a lot better, it does take time - possibly a year or so. 

A bit about me, I’m 58, married to a wonderful man who has been an absolute diamond though out all our years together, not just this. I have worked in the NHS for 17 years ( admin side) and have a rescue dog called Tilly, who just follows me about. I have no children, oh, that’s another thing you do need BRCA testing 1 & 2 if not already had it done, mine came back positive so my cancer is genetic ( same as Angelina Jolie) I have recently just started driving again and being fully independent and can now go shopping on my own which is lovely.

where abouts do you live? I live at Tingley just outside Leeds. I can understand how great it must feel to find someone the same as you. Anytime, don’t worry, even if there’s just a question you need an answer too. I don’t really check the mcmillan much now.

Keep strong. Ann. x

photohappy
Posted by

Hi Sam, 

Just read your profile on the forum, I,m sorry I keep saying stay strong etc.....I also hated that and chin up! I just wanted to be normal!,

Sam-1818
Posted by

Hi 

thank you for your reply 

I was so keen to get a reply from you ... please could you tell me a bit more about yourself? 

Sam 

Sam-1818
Posted by

Sorry if I appear keen but I’m clinging on to someone who has been through this. 
The prognosis is so poor (it appears that way) so, I’ve got myself into a place where I’m very worried 

Sam 

photohappy
Posted by

Hi Sam, 

pls don’t be worried, did you get my last message? 

Biddy261
Posted by

Hi 

I don’t go on this site often but picked up you’re from Leeds and have PPC - I’m very similar with PPC diagnosed in September 2018 and now completing my second round of chemotherapy treatment after it recurred last September - we are all different so don’t read too much into this.

i live in north Leeds and have a place on the Target Ovarian Cancer day at the Queens Hotel on March 5th. If you haven’t got a place, do sign up ( through their website) or through the specialist nurses in Bexley. It should be interesting and you can take a supporter with you. Perhaps there’ll be several of us from this event to make a support group from.

Liz

Biddy 261
Sam-1818
Posted by

Hi Liz 

Thank you for your message it’s nice to hear from other people as it can feel very isolated. I’m sorry to hear you’re now going back for more treatments. 

Can you tell me a bit more about your diagnosis and you? 

I live north of York near Helmsley if you’ve heard of it (it’s very small) 

I had my first chemotherapy treatment yesterday so I probably won’t be up for going to the support group but it sounds a great idea! It’s good to talk to like minded people. I would have been able to chat to people yesterday but had a full on wobble and was put in a side room! I’m a nurse so, they’re pretty difficult to keep happy! 

Look forward to hearing back from you 

Sam x 

photohappy
Posted by

 Hi Liz

Thank you for replying to my post, surely we are not the only 2 in Leeds with PPC lol!! Would love to go on the 5 th but I am back at work that day. I was diagnosed a year ago, had the chemo and surgery, 6 weeks later it came back ( was told it does tend to come back so was prepared) am now on beva but am having quite a few side effects - but can put up with it, it’s better than the chemo, as that was hell for me.

I see you live in North Leeds, I live in Tingley, but we have a caravan at Bardsey where I have been resting/ convalescing as it’s so peaceful there, which I’m sure has helped me enormously. Do you work? did you have the surgery? my treatment day is a Monday every 3 weeks.

Ann

Biddy261
Posted by

Hi

Yes, I’ve heard of Helmsley - very beautiful part of North Yorkshire. 

My story is typical in that I passed off the symptoms for several months - treated for bladder infections which i must have had concurrently. The time after diagnosis was probably one of the most difficult and after drainage, the symptoms greatly reduced.


There are ways of managing chemo and it’s side effects. I don’t recommend you read too much - but you’re a nurse and will know what you need this way. I read about PCC in bite size stages and this suited me. 

The Target Ovarian event in March is just a day conference. I went to one in Birmingham last year and found it so good to just be with women in a similar boat. It was too far to makes links but perhaps something will come from next months event.

As for me - I’m 63, retired and pretty active when I’m not unwell. Love travelling and managed five trips to Europe last year once I was given the green light. I’m now looking for later this spring as I have only one further chemo to go - but we’ll see! 

I gather you had chemo yesterday so it’s feet up and box sets for a few days ... good luck.

Liz

Biddy 261
Sam-1818
Posted by

Hi liz 

Helmsley is beautiful I agree! It has some fabulous coffee shops and is probably the reason I’m always so skint! 

Yes I had treatment yesterday which was a full day. I had a bit of a reaction so, we had to stop and give more steroids and start again with a slower dose. 

Did your cancer return in the peritoneal area? When you’ve had two? Sessions will that be it again? Do they review you on a regular basis? 

It’s great you like travelling and are able to get away. I’d love to go to Italy and hope when I feel a bit better I’ll be able to go. I’m on my own with three boys (men) who all live with me at theoment. However, the youngest has just bought a house but only 20 minutes away  

I’ve been watching daytime TV today (unheard of for me) I’m normally so active! This diagnosis knocks you for six in every way possible! I’m 51 so it was a massive shock I thought I had fibroids! 

Sam