Hello,
My wife and I in Turkey at the moment. She's in the intensive care unit at a specialist cancer facility. I'm alone in a hotel room 10 minutes drive away.
We seem to be close to the end of a journey that has been going on for just over a year. I feel like an enormous empty void.
We have been through multiple surgeries and chemotherapy together. At every turn when light has appeared at the end of the tunnel something has happened which has made us take five steps backwards into darkness.
She had a full hysterectomy last autumn. She had a dangerous case of peritonitis in April and her colon was removed in June.
She has a stoma which is not functioning correctly because she has a number of small tumours in her small intestine. She has one larger, more active tumour which has metastasised from her abdomen into her pelvic bone above her left hip. She has not been able to keep any food down for months.
We arrived here from our home in Bulgaria two weeks ago. She weighed a mere 32kg and travelled by ambulance. Slowly she has responded to the stabilisation treatment and was well enough to start radiotherapy for the large tumour at the beginning of this week.
Two days later she has had what was described to me as a seizure. She was hallucinating and trying to remove everything she's connected to.
She was given anti-epileptic drugs and ICU are treating her for septic shock and Wernicke Encephalopathy. If she responds to the antibiotics and the Thiamine in the next 3/4 days she can go back to her normal room and hopefully finish the course of radiation treatment.
The lead doctor told me today that the cancer may have spread into her cerebral fluid or the membrane surrounding her brain. They have done all the tests that they can, bar a lumbar puncture, but if that is case this won't show up on a CT or an MRI.
He said that if she does get back to her room the radiation must be completed because she is at risk of fracture.
After that he said we need to talk about conducting the chemotherapy. Because she is so small and so fragile she is at mortal risk from any infection. He said the treatment would be hard on her and me. He didn't use the word terminal but it looks very much like we are boxed in. I hope I have written this in the correct group.
I saw her today briefly. She recognised me and smiled but she cannot speak. The look in her eyes is that of a wounded, frightened animal.
I've told her how much I love her and what a wonderful wife, mother, daughter, sister and friend she is. She is so loved. I tried to talk about happier times and assure her that our 4 year old son is safe and cared for.
She said before we arrived here that she wasn't frightened to go because she knows I will take good care of our boy. This upset me greatly.
If these are our last moments in this world what else can I or should I say to her? I don't want to regret not saying something now in months and years to come because I didn't have the courage to ask the thoughts of a group like this.
Our boy is with his grandparents at home. He knows Mommy is very poorly. I don't think it computes that she probably will not come home. I'm grateful that their last moments together at the start of this week were when she was the best she'd been for months. They were able to hug and kiss and talk.
Sorry for war and peace. Thanks in advance for any advice you may have.
Sc00t
Hi Sc00t,
welcome to the online community. I am so sorry to hear about your wife's illness. What an emotional rollercoaster journey for you both. I can't begin to imagine where your heart and your head are at.
My own journey caring for my husband is different but I "get it". He was diagnosed with a terminal brain tumour a year ago. Any time he was in hospital, due to the covid restrictions at the time, I wasn't allowed to visit him. Three times we said goodbye not knowing if it would be the last time I'd see him or not.
I've not really got any advice for you other than keep doing what you're doing. Be there for her, as hospital visiting etc allows. Be led by her wishes. It sounds as though she's getting good care and that there is a plan in place for her care/treatment. Make sure you're comfortable with what's being said by her medical team. Ask every and any question that you have - there's no such thing as a stupid question.
Probably the last thing on your mind right now, but take care of yourself too. Your lovely wife needs you to be strong and your son will too. So make sure you find time for yourself too here. It's all to easy to feel consumed by what's going on around you and forget to attend to your own needs.
Macmillan Support Services also offer lots of information, support, financial guidance or just someone to listen. It’s free to call 0808 808 0000. Most services are available 8am to 8pm, 7 days a week. Have a look by Clicking here to see what is available. There's also our Ask an Expert section if you do have any medical questions but do allow two to three working days for replies from our expert team.
This group is always here to listen and offer support to you. There's also a Carers only forum - Macmillan Online Community that you can reach out to. Personally I've drawn a lot of support from both groups over the last year.
Stay strong. Sending you all a huge virtual hug
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
