One step foward ,two steps back ....never ending

[Sannyboop]

Why can’t something just go right for me ..it’s one step forward and two back ,every time I get bit of good news ,it never fails ,I end up poorly again ..was so happy when they told me my bowel operation was a success,,but for the last week I’ve been so bad I couldn’t eat ,constantly sick ,just feeling really horrible ,which has now seen me been re admitted,,further tests ,scans now show ..Crones...I just want someone to tell me things will be fine ,,I’m scared ,I try my best to be positive but it always seems to back fire ..I worry about my kids ...well especially my youngest who’s only 13 but autistic and is constantly checking I’m breathing or I I cough he runs away ....as if what he doesn’t see won’t hurt him ..he lost his daddy 3 years ago very suddenly. Aw I don’t know what I’m trying to say I just want to be a normal person again ,I hate being classed as vulnerable,, terminal..sorry for such long post and probably doesn’t make sense to you but I just felt maybe writing it down would make me feel better...I’m also on immunotherapy but because my bloods showed I had really high infection markers they never gave me it ,so now I’m worried not having that treatment could affect this ...thanks for reading and sorry for such long post

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear Sannyboop

Truly sorry you are having such a rough time and it is important to say how you feel, no explanation or apology needed.

It sounds like you have had quite a difficult time already prior to all of this so it is no wonder that you feel like you are not getting a break.

It is great news that your bowel surgery went well and the cancer was removed. Sorry to hear you have been told you have Crohn's.

Crohn's can be caused by a number of factors one of them being stress. This link provides information on Crohn's if you wish to look at this:

crohnsandcolitis.org.uk/abo...

Chron's and Colitis UK have lots of support on their website and a helpline:

crohnsandcolitis.org.uk/sup...

0300 222 5700 or [e-mail]

It is not uncommon for the Immunotherapy to be stopped temporarily if there are any setbacks in health and once recovered this may be restarted, your specialist will be able to advise you on this.

Hope you have plenty emotional support from your friends and if this is not the case, you may wish to consider finding support or coping strategies through a counsellor to aid you in getting through all your treatment. Your GP or lung cancer nurse specialist would be able to refer you if you feel this would help.

We have a new service called 'Keep in touch' where one of our dedicated team members call or email you once a week to provide support, if you are interested in this you can register for this through this link:

roycastle.org/covid-19/info...

If you wish to discuss anything else you can either email us at [e-mail] or call our freephone nurse led helpline number on 0800 358 7200

As you know emotions come and go and hopefully how you are feeling will pass soon. We are here to support you in any way we can, even if this is a place to offload, feel welcome.

Kind regards

The Roy Castle Support Team

[Bettyblue54]

Sorry you are having such a horrible time and it is natural that you worry about your children. Have you got support around you to help with the children. My husband has lung cancer and is also frustrated at being in this horrible place. Hates being helpless. I hope you have some help and support. If you ever need to offload, message me. My husband had 2 cycles of immunotherapy but is too poorly for treatment. We are seeing the specialist next week.

[JanetteR57]

Sorry to read about your health problems - we have a close friend who has had Crohn's disease for many years and a former colleague has it too. One closed off his life to it - living almost like a recluse still living with his parents (in his 50s) whereas the other married, had a family, worked yet both have bouts of feeling very poorly and medication (steroids etc) to relieve it. It's natural to be scared but there are ways to help live with such conditions. It will be a mental shock to have a diagnosis of any chronic condition and as already advised, there are support groups that will more readily help with hints and tips of living with the condition. It's good that your bowel operation was successful - sometimes these things happen - I had lung surgery in Dec 2010, diagnosed with cancer in Jan 2011 and then started to recover ok but had a number of setbacks and also been hospitalised several times with severe chest infections in the last few years and surgery on my arm. I had to stop thinking things were related to the initial problem - it's too easy to think everything is linked - but we have illnesses before our diagnosis and will develop others too afterwards - that's life - not everything is caused by something we've already had. I found the book 'cancer is a word not a sentence' by Dr Rob Buckman helped me with moving my mindset into a different place. If your clinicians know about your Crohn's disease, that will be why immunotherapy was stopped - as conditions of the immune system (like Lupus, Crohn's, rheumatoid arthritis as examples) can prevent the treatment working properly so were excluded from clinical trial cohorts. It sounds as if things are a bit overwhelming for you right now, so maybe a call to a nurse led helpline may help you too.... if you don't have access to a clinical nurse specialist. good luck and hope you feel a little more positive soon....