Maggie's

See what's happening in the Community

You are not logged in.   Log In

Meet the team

As well as sharing experiences with our friendly online community, registered members are able to contact our experienced online team. The Centre is staffed during office hours and the online team aim to reply within 24 hours.

Psychologists and experts from other Maggie's Centres and partner organisations also facilitate some group and individual sessions.

Picture of Topic  'Today I am feeling' - managing emotions

Topic

Topic 'Today I am feeling' - managing emotions

Share how you are feeling and swap tips for managing stress with other members and the online team

  • 186 conversations

It's all too much

Started by Anonymous on 24 February 2016 at 00:20

Just joined, first post.  I have Splenic Marginal Zone Lymphoma and am currently on watch and wait after a splenectomy Dec 2011.  My husband has just been diagnosed with prostate cancer and I feel so very, very angry at the double whammy.  It looks as though he will be having his prostate removed soon, we live a long way from the hospital, I have no transport and no idea how I am going to be able to get to visit him while he is in hospital. Everything just feels too much.  I'm scared. I'm lonely and I hate this disease more than I can find words to express.

I'm angry that it took so long to get doctors to believe there was anything wrong with me.  I spent years in pain, years going back and forth to my GP with many and varied symptoms, I'm "lucky" that my lymphoma was so slow growing or I'd have been dead before anyone even believed I was ill.  As it was I only got a diagnosis because my spleen swelled to the size of a rugby ball and I was admitted to A&E.  There was endless confusion about notes not being transferred from Haematology to surgery (at the Horton) and I feel I had to stay on top and chase everything myself. 


I was eventualy admitted to Churchill for my spleen to be removed (late diagnosis meant no chance of saving my spleen and trying retuximab treatment) so I now have the worry of increased infection risk due to no spleen.  After my splenectomy I ended up with a collapsed bowel - again more anger as the surgeon had warned me this was a remote possibility but when it happened it wasn't picked up for days. I was constantly vomiting and in great pain but was just given anti sickness pills. Ended up with a hospital stay 4 times as long as originally planned, and ongoing health issues due to the damage to my intestine.

Because of this I have no faith in my husband coming through his operation inscathed.  The possibility of incontinence and erectile dysfunction is scaring us both -m and yes I know there are ways around things but to be frank I want what we have now!

I'm tired of hospitals, I'm sick of cancer and I'm scared of the future.

Comments (1)

Displaying 1 comments

  • Picture of SusieQ
    From SusieQ  
    24 February 2016 at 11:26

    Hello,

    There are some days when the world doesn't feel a fair place. There will be other online visitors reading your message today, with nods of recognition.

    Hearing of your husband's prostate cancer, after so many years of having to deal with your lymphoma, may feel a final blow after your own struggles with health system problems and complex treatment pathways. After having such a difficult time yourself...the sense of 'here we go again' as your husband faces treatment sounds understandably at the forefront of your mind.

    To move forward with this next big step into the cancer world again, it may help to address the fear and anger you're feeling. It may be difficult to get to your nearest Maggies Centre (Maggie's Oxford), but it could be useful for both you and/or your husband to drop in. I'm thinking for you specifically, help and support with the intense emotions you're feeling - and the acknowledgement that they're normal, after what you've been through - might help ease this immediate stage.

    The whirlwind of diagnosis and treatment options for someone with prostate cancer is a lot to take on board at the best of times. Have you and your husband met the uro-oncology specialist nurse? Hopefully, she or he can be a good contact whilst you await the next stage of his treatment. The hard part for you both, is trying to build trust in a new team, when you had a personally bad experience with your own cancer...let the specialist nurse know of the issues nbehind how you might be feeling now.

    There's an excellent online community on Prostate Cancer UK website, with many wives and partners joining in discussions about all sorts of issues...and they are great at sharing tips, experiences and advice. Sometimes even just reading through the posts can help feel less isolated, particularly with his/your concerns about the possible side effects of the surgery.

    These suggestions dont solve how you were feeling when you typed your message - but I'll message you privately too, so you have someone you can talk to 'behind the scenes' too..

    Warm wishes

    Sue

     


Displaying 1 comments


Registered Office: Maggie's, The Stables, Western General Hospital, Crewe Road, Edinburgh EH4 2XU   Registered Charity Number: SC024414
The Maggie Keswick Jencks Cancer Caring Centres Trust is a company limited by guarantee   Company Number: SC162451