Hi I’m new to this I’ve been reading the posts here for support mostly as I just can’t get my head around what has happened to us it’s so shocking and even more so when I see how many people are in the same shocking boat trying to cope with what is going on so I felt like I needed to write down our story
my husband went to the Dr 28th February as he had a swollen testicle the Dr thought infection so gave antibiotics after 2 weeks on antibiotics no change and as we were going on holiday thought we better check if he needed more antibiotics as there had been no change so the Dr said no we’ll organise a scan after your holiday.
Day 3 of our holiday and my husband is struggling to eat or drink very much feeling very full very quickly so was like this until we got home
We contacted the Dr he thought maybe gastric or bacterial infection so bloods taken had an ultrasound of his testicle which showed no cancer swelling was due to fluid
back to the Dr still not eating or drinking much so Dr books him in for a CT scan all the time he is getting thinner and weaker
26th April CT Scan
29th April call from Dr to go in for the results as they are not good a large mass on his Kidney spreading towards the bowel and Liver urgent refer to ARI
1st May meeting with Urologist told it is so advanced there is only 2 options Do Nothing not really an option we were thinking then possibly a biopsy and maybe targeted treatment to try to slow down the spread of cancer in the liver to be decided by Multi Disciplinary Team
Shocked Horrified Scared Disbelief all the words you can think of
A week later the MDT decided that it would not be in his interests to do the biopsy and so here we are treating any symptoms and Palliative care
we are getting support from the District Nurses and MacMillan nurse and lots of support from friends and family I think we are so lucky to have them
He has a lot of fluid build up and so far has had it drained twice each time 8 litres of fluid has been removed mind boggling but they resisted doing the drain at first but it does make a difference working on getting a permanent drain fitted so the district nurses can drain him at home
he had steroids which really boosted his energy levels but can’t take them for long and energy almost back to zero he had a blood transfusion this week which I think has really helped him I’m hoping they will continue them to try to help with energy
so here we are today we have a hospital bed at home as he can’t lay down and needs to be sitting up all the time I am in a recliner chair so that I can be near him if he needs anything through the night he can still move about but it does not take much to make him breathless he was kind of zoned out at the weekend eyes rolling and looking like he was in a dream hands and legs moving about I thought something was happening but then ask him if he’s ok and he says he’s fine and he is still eating though not much
it is heartbreaking to watch him he is 61 we were planning on retiring next year how cruel is life I feel like I am grieving for the life we should have in front of us it feels like we have been robbed
I cannot begin to imagine a life without him so we take it every day as it comes we try to make the best of it but how do you make the best of this yesterday he told me his plans for his funeral just not fair
and then I think we are lucky we have this time to prepare and plan lots of people do not get that
this has turned into a long rant I’m afraid but like many here have said you just need to write it all down I’m not sure I can make sense of it all I can’t stop crying when I look at him and I see my beautiful husband failing in front of me
Hi Diamond2112 and welcome to the Macmillan Community but so sorry to hear about your husband’s diagnosis.
A cancer diagnosis like this in the family can be such a challenging and stressful time but getting support from others who are dealing with the ‘exact same' support challenges can help you a lot (I have a different incurable cancer)
This New to Community area is like our reception desk where we try to direct you to the best part of the Community for you to get support. The Community is actually divided into dedicated Support Groups (Discussion Rooms) and when it comes to the practical and emotional challenges of supporting your husband and indeed yourself you may benefit from joining and posting in our
Supporting someone with incurable cancer (that I do see you have joined)
……. 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 Italic 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.
You may find it helpful to call the Macmillan Support Line open 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/financial guidance or just a listening ear.
We also have our Ask an Expert section but do allow 3 working days for a reply.
Talking to people face to face can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing and support all the family.
Please do get back to me if you need further help navigating the community.
