Hello, a few weeks ago my husband had a colonoscopy which resulted in him have a CT scan which then found gall bladder cancer; this was reported to us by his GP four days before our wedding. He is now waiting to see a specialist in Birmingham (to cut a very long story short) a week today and we have had little to no information apart from that on top of the cancer he has to have his entire colon removed due to cell changes on a polyp and there are nodes on his lungs. We are devastated to say the least. The lack of communication from the healthcare professionals has been so frustrating and we have had to chase up every step of the way so far. The uncertainty of knowing exactly what is going to happen, and how our lives have dramatically changed in the blink of an eye, doesn’t seem real. My husband doesn’t really want to talk to anyone else about it apart from me, which of course I am there to listen and support, but I wish he would speak to someone who isn’t emotionally involved to give GI a different perspective as I can get upset and then that upsets him and I think I end up making him feel guilty for something that is out of his control.
Hi Sunflower2 and a warm welcome to the Macmillan Community but I am sorry to hear about your husband’s diagnosis and to hear about the lack of communication and information.
I know from experience having been on my cancer journey for over 26 years with two very rare, hard to treat types of Non Hodgkin’s Lymphomas (one incurable), Asbestosis and recently Prostate Cancer that navigating this journey can be such a stressful and challenging time but talking with and getting support from people who have walked or are walking the ‘exact same' treatment journey, be it as a patient or caregiver can help a lot.
This New to Community area is like our reception desk where we try and link you in with the best areas in the community. The community is actually divided into dedicated Support Groups (Discussion Rooms) so can I recommend you look or get your husband to join and post in our dedicated…….
……. support group.
This group is a safe place to talk to others who may have a similar diagnosis, treatment experience, to ask questions and get support from family members who are navigating the same support journey.
As for the practical and emotional challenges of supporting your husband and indeed yourself you may benefit from joining and posting in our general cancer…
……. support groups where you will connect with a wide range of members navigating the exact same support challenges.
To connect with a group click on the “Bold Links” I have created above …… then once the group page opens click in the [Black - Click to Join - Banner] that appears at the bottom of the page and this will then confirm that you have joined the group.
When you are ready……. you can introduce yourself by putting up your very own post by clicking [+ Create new post] or [+] in the top right of the group page.
You can copy and paste the text from this post into your new post.
It is an emotional time supporting family so you might find this Macmillan information your feelings when someone has cancer helpful as well as this link getting help with your emotions.
As always the Macmillan Support Line is open between 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00…… this service provides cancer information, practical information, emotional support, benefits and financial guidance or just a listening ear.
Talking to people ‘face to face’ can be very helpful so do check to see if you have any Local Support in your area, do also check for a local Maggie's Centre as these folks are amazing.
Do get back to me if you need further help navigating the community.
