My husband was diagnosed with lung cancer just before Christmas, he was told that because it is early stage he can have surgery to remove part of his lung, we were told that there is a small opportunity for this surgery and that we would hear from a thoracic surgeon soon.
To cut a long story short we didn’t hear from anyone until April and had one days notice for his surgery but before that he was diagnosed with a kidney tumour and had three operations within 17 days in April.
His lung operation was a success, he was discharged after two days hardly able to walk and had no after care whatsoever. (And it emerged that because of the delay by the time they operated his cancer was stage 3) His biopsy on his kidney tumour ( thankfully the biopsy revealed it was benign) led to complications with his bladder and he had to be catheterised. When he had the catheter removed one week later he started having severe abdominal pain, it emerged that his prostrate was enlarged and when they tried to re catheterise him it caused bleeding, he then had to have emergency surgery to take the blood clots out of his bladder.
During this operation he developed hypoxia and had to be taken to the high dependency unit, he was then diagnosed with sepsis. Thankfully he recovered from all of this but each time he came home there was no after care and I was constantly playing guessing games. I had to buy and change his dressings from his surgery and noticed one of his incisions had become infected, I had to wait for several different people to call me after calling 101 and then had to drive 21 miles to pick up antibiotics.
My husband then started a course of chemotherapy and the side effects were horrific for him, after a week of severe nausea, oral thrush and having to sleep for more hours than he was awake he was admitted to hospital again with sepsis.
He has now decided not to have any more chemotherapy but is still struggling to cope with everything that has happened to him this year.
I have been worried throughout all of this not only about being strong for him but I have had to go out and get shopping during lockdown, I have been very careful and his Covid swabs have been negative thankfully.
I have noticed now that this is taking it’s toll on me, I am having mood swings, strong one minute and tearful the next, I am even having angry outbursts even though I am normally a placid person. I am having physical symptoms too, I was diagnosed with seborrhoeic dermatitis today even though I have never had a skin condition in my life before
I have always been a strong and positive person but everything that has happened this year is beyond my control, how do people cope with this?
I don’t know, Anne. I’m coping on a functional level but feel traumatised by personal circumstances during the last three months. Like you, I’m emotionally fragile now and physically unwell. I’m generally a positive person but I can’t remember when I last felt in awe of anything.
I think admitting so much is out of our control is a start. Asking “what can I do in THIS moment?”
I keep telling myself this is an opportunity to “grow”, but really I want to curl up and hibernate. Like a seed, and rise again next Spring.
We will rise again, I’m sure of it.
I’m sure others will have lots more to offer; I just want you to know you have a fellow wonderer waving here across the internet.
You have been through so much, as of course has your husband, it is hardly surprising that you are now suffering the after effects. In a sense, I would say that you are suffering from PTSD, not that I am a medical expert.
As for how people cope with the level of care and responsibility, I guess we cope because we frequently have no choice. The worst times for me was the responsibility of deciding whether to call an ambulance, whether to go the GP route, how to battle with Social Serivces, all single-handed. In my own case, I ended up at the GP and after some delays, had both counselling and anti-depressants. In fact, the latter were a life saver, they did not make me happy but they did take the edge off and allow me to function. For the first two weeks, it was awful with bad side effects but then it did help.
Also, less dramatically, talking to people who had gone through similar events on this Forum was a life-saver for me and why I am still here even though my caring situation has ended.
I wonder if Macmillan would provide any counselling for you if the GP route is not available? Anyway, whenever you want to talk or just have a moan, we are here.
Take care, Another Anne
Hello Anne_2007. Sorry to hear about your troubles.
Dealing with Cancer is already enough without all the complications and poor support you seem to have suffered.
All the best to you and your Husband.
I just thought I would mention something, it would be wise to check if your skin condition is not SHINGLES rather than dermatitis as the treatments are quite different. Shingles is often brought on by stressful conditions and has cropped up a lot during the Covid period for that very reason. My Dad had it, and it was at first misdiagnosed.
Anne, is your husband back home again, or still in hospital?
I am not in the least surprised that you are feeling like this, it’s just all too much.
I cannot understand why you haven’t been given any support at all. Have you been in touch with MacMillan?
Do you have a local hospice? Ours does all sorts of things around cancer and life limiting illnesses. Give them a ring and ask if there is anyone to talk to. You are going through a form of grieving at the moment, grieving for all your plans that will never be realised now. Be kind to yourself. Your own health and wellbeing are vitally important now.
How old is your husband? Has anyone told you that he is probably entitled to a disability benefit, either Attendance Allowance, if he is over pension age, or PIP, if under pension age?
Before he was discharged at any time, did anyone come to see if the house was suitable for him now, or discuss with you whether there were any aids or adaptations that would be helpful to you or him?
Does he have a comfortable reclining chair? I’ve had 8 operations, and found that my recliner was much more comfortable than my bed, especially whilst the abdomen was healing.
Can he manage to have a bath at the moment, if allowed yet?
There are “rise and fall” bath seats, my mum had one, that just sit in a normal bath, very good indeed.
Do you have a dishwasher and tumble dryer? Both will help.
Don’t try to be Superwoman and do all the work you did together. It really doesn’t work!
Weeks after my husband died, I was nearly killed in a head on smash, couldn’t walk properly for 5 years. I did away with every single border in the garden, and had a larger patio built. So much easier to manage, my son cuts the grass, with no borders it only takes about 15 minutes. You could have a gardener to do this for you (paid for with the Attendance Allowance money).
Feel free to ask the forum about anything at all if you think we can help.