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wifeofdave

Living with uncertainty

This year has been dominated by husbands poor health. He had a T3 (N2)tumour removed from his jejenum, but cancer remains in lymph nodes that could not be removed due to their location, near a major artery that serves the bowel. This cancer is terminal, and as yet no further treatment options are available. The cells are poorly differentiated and despite having a large tumour providing a good size sample they are unable to diagnose the cancer. The oncologist has said, that it could be a secondary cancer and that they have missed the primary. I hadn't realised that this could happen but the body's immune system may have done its work and got rid of it! We know that this is a very rare cancer. He had surgery on 02/07/19 and is due next CT scan on 27/08/19 to try and determine how aggressive this may be. Apart from all of my extensive research online ( mainly done before surgery while we were waiting for scans etc) we know nothing! and lack a diagnosis. Surgery was performed as an emergency although not acute as although the tumour was large his bowel was not yet blocked and bowel movements were generally all ok. Pain, almost being to scared to eat , weight loss, tiredness, anaemia, sweats, high temperatures and nausea, excessive burping, were his main symptoms. Surgery has improved this and although no one said, from my research I knew that this surgery could actually be considered as palliative care. Medics/surgeon had an idea from MRI and Ct scan that lymph was infected in a place they were unlikely to be able to remove- it was hinted at. So since going to the GP early February we have been in the waiting game of uncertainty, whilst trying to get our heads around that this is end of life without knowing if its weeks, months or a few years. The honeymoon of symptom free after surgery is already passed, he is extremely tired and can experience incredible night sweats, where he is absolutely drenched are occurring again along with spikes in his temperature. Thankfully we can still enjoy a meal together which prior to surgery was a loss in our lives, as we really enjoyed our meals. Sleep eludes me, we are trying to make memories and everything in me wants to go away with him and have as much fun as we can. We are both 63 yrs old and recently moved to have some life for ourselves after raising so many children and grandchildren. We were still working ( though both of sick at the moment) going back to work for me is an issue, not that they are not being supportive, but this uncertainty makes planning so hard. If I am to be on my own, I need my job, financially and for my own well being, work colleagues are a source of friendships especially in the light of moving to a new location only 12 months ago. Has anyone here experienced such prolonged uncertainty?

Elmac

Hi @wifeofdave - welcome to the forum, you will find lots of help and advice from many friends and relatives - there is a special area for carers and relatives on the forum that might be a help to you.

I can't help or advise on many of your questions, for although I had surgery 18 months ago and chemo for 3 months after, it seems that that at the moment I am cancer free - but the worst part of being on this "C" path, is the waiting and not knowing the answers. Do you have a Macmillan centre near you as they can offer you a lot of help and advice, both medical and financial,

One bit of advise I was given which helped me enormously, was to record all the sessions I had with any of the medical advisors, as so much goes in one ear and out the other when discussing it all. I downloaded an App called AudioMemos for 99p onto my phone and iPad, and the medicos don't mind at all, in fact at Sussex, they actively encourage it.

Hope you get some more responses to your message from those who can help more than me - maybe pose a direct question to Ask the Nurse part of the forum.

Good luck to you and Dave

Lizalou

Hi @wifeofdave
What a nightmare, I'm so sorry that you are both having such a worrying time. It sounds as if you both need more advice and support that you are getting at the moment.

As you say, not knowing what is really going on is the worst thing of all. Maybe you need to press for some more answers and some more help. Has Dave got a specialist nurse who can help you both? What about your GP? And Macmillan?

Best wishes to you both :x::x:

Baxter2

Hi @wifeofdave and welcome to the forum. I hope you'll find our community a source of support, information and friendship.

Intend to agree with both @Elmac and @Lizalou in that, it's difficult to offer advice or help with the many questions you have. I'd probably suggest you make a start with a blank sheet of paper and write down everything you've both got on your minds regarding all this. From there, perhaps think about forming a list of questions to ask and sources of support to consider. List them all e.g. the relative to relative group on here, maggies centres, Penny Brohn, Macmillan, friends and relatives, specialist nurse etc etc and think about approaching them all one by one to see what's on offer.

It does sound to me like Daves consultant oncologist could be offering some further detail about Daves condition and if he genuinely doesn't know, to be honest enough to say so. I'm guessing you're happy with his current oncologist? Has he exhausted all methods of assessing the cancer eg PET scan, MRI?

Sorry I think I'm rambling on here and sorry I can't be of anymore help. Rest assured though, we're all here for one another so please stick around and we'll try and support you as best we can!

Sending love to you both

Karen πŸ’›πŸ’šπŸ’™β€οΈπŸ’œ

Elmac

From @wifeofdave - she answered me personally, but I think her message was for everyone who had responded

Thank you for your kind responses, the app sounds like a great idea. In response to being happy with the oncologist we have only met her once, at the last appointment and prior to this all our dealings have been with the surgeon. So it's hard to say whether we are happy. We were assigned a specialist GI nurse as soon as tumour was seen. She has the empathy but we have little in direct answers, but we perhaps we haven't asked the most direct questions. The surgeon said right from the start that surgery would improve his quality of life and that he would value that over having chemo which may impair his quality of life for perhaps little benefit. I have rang McMillan a lot, they have been helpful. But it appears we are battling against an unknown, local support groups ( all 2) are cancer specific. Specialist nurse has put us in touch with someone who will sort PIP for us under terminal illness. I didn't realise I was asking so many questions, or am I in denial? Thank you all, I am, we are, exhausted at the moment. Hopefully I'll get some proper sleep to focus tomorrow.

Baxter2

Thank you @Elmac. @wifeofdave I got your lovely message too. :x::x:

Ninatoo

@wifeofdave I notice you said your husband was due more surgery on 27/8/19. I hope it went well. I am so sorry you feel so overwhelmed and uncertain and I hope you can get some answers soon. It is already a stressful thing, not getting answers makes it more so. Thinking of you :x::x::x:

wifeofdave

Thank you all for your replies and support. Whilst we await the full report from the radiologist, the cancer has spread to his liver. the 3rd opinion stated that they thought this tumour was some kind of carcinoma and was likely to have started in the small intestine. There is still so much that medics do not know.No stains showed up on the slides of the biopsy on the tumour removed. They do not know how the cells behave other than this scan revealing that it must be of aggressive nature and several areas of his liver are infected along with the lymphs. I am calm writing this at the moment, but of course we are devastated. as a family we have been through so much grief and loss these last 27 months, it is all too familiar with me. I will survive because I have too, each time I am forever changed and sometimes I wonder how I am going to be able to cope.

Dave is a palliative care nurse and 3 weeks ago he referred himself to the palliative care team. The GP has said in his opinion it was too soon, but making the end as best we can means involving the team as early as possible. He has also referred himself to a hospice close by, He wants me to remember our home as where we lived not where he died.

We didnt need a doctor or the CT scan to tell us the cancer had spread the symptons were evident. He has been offered chemo, but is currently not well enough to embark on it. Also because of the high temperatures and profound sweats, he would probably have to go into hospital many times to check that it is not a serious infection as all doctors wouls want to be diligent in their appraisal. It is therefore unlikely he will choose this option as we do not want his last weeks/months to be constant trips to the hospital. We are happy with the way he has been treated so far, except for all the initial waiting times which were too excessive. But the rarity of this cancer means it would have been hard to suspect.

Our focus is preparing as best we can for the end of his life. I will say though that this grieving before loss is absolute BITCH'n BASTARD to only have to go through it more when it happens! But an unavoidable process of life.

I wish you all the best in your cancer journeys, we have discovered a Maggies Centre which unfortunately is an hour away from us but intend to use this excellent facility and support. Just hoping that I will have the time and support to enable to access this, especially when he gets worse and Ill be frightened of leaving him.

Lirio345

Good morning @wifeofdave, I just wanted to send my love to you and your family. I am so pleased that your husband has referred himself to the Palliative Care team and Hospice - he sounds very wise and I think importantly staying in control. Take very good care, Kim :x::x::x:

wifeofdave

Thank you so much Kim. He is wise in this situation and he has a heart of gold . :x:

Baxter2

I'm sorry to read your latest update @wifeofdave

It sounds like you're a very close couple completely in tune with one another. Sending you both loads of love

Karen πŸ’œπŸ’šπŸ’™β€οΈπŸ’›

determinedjoan

Thinking of u both at this difficult & sad time. Hope you all get info, help & support that has been so grievously lacking. Gutted that Dave Palliative Care Nurse who has helped so may others has had to refer himself for PC & Hospice.
Sending πŸ’• & hugs πŸ€— :x::x::x:

Gypsy

@wifeofdave, I find your post quite inspirational but so utterly sad that you have had to write it. I can only say, I will think of you both and your family as you go through this. Love and prayers, Gypsyx

wifeofdave

Thank you Gypsy, determinedjoan and Baxter2 for your kind replies. It’s great to be reminded that Dave has helped so many people, that is so true. I also forget that we can be inspirational to each other, and am very grateful for that comment.
With love and compassion to you all. :x::x::x:

Lizalou

Thinking of you both @wifeofdave and so glad that you both have the courage and presence of mind to grab all the help you can. It is sad that places like the Maggie's Centres are so few and far away.
Sending hugs :x::x:

jj

@wifeofdave, yes this must be such a knock back but both of you sound like you are both strong and wise. Just take a day at a time and create new special memories now, each day. Hugs and best wishes