Sorry this is going to quite a long update, so much has happened since our IVA finished…
My last update ended with finding out hubby had lung cancer and our last payment leaving my bank account, hubby went into hospital and had his upper lobe of his left lung removed and as it was only a stage 1 (less than 3cm) tumour he did not need chemo or radiation therapy. So he was discharged from hospital with just regular check up to go for, to start with every 3 month then it went to 12 months. We duly attended each one and after each appointment with scans etc we received a letter saying ‘ Congratulations you are still cancer free etc. ‘
During this time because of him not being able to ride his motorbike again I took driving lessons and passed my test in Aug 2015, (not bad for a 54 year old), we applied for and got a Blue badge as hubby was unable to walk more than 10 yards before having to stop because of his breathing.
We carried on with life feeling positive for the future, our debt worries were behind us we received out completion certificate within 3 months of our final payment which we were surprised at but pleased it meant at long last it was all over. Hubby’s breathing was still not improving but we assumed that was because his whole left lung had been damaged, the accident had wrecked the bottom half and the top half had been removed because of the tumour, so he was actually only able to use one lung, we kept getting told by our GP that the right lung would compensate given time. This was around Dec 2015.
By April 2016 his breathing was still bad and when we went to the Midlands to see family, hubby was that bad with the Midlands air we ended up staying 30 minutes before bringing him home again. He eventually stopped going to the Dr’s as much he felt they were not really helping him, the Dr could see he was deteriorating but couldn’t seen to find the reason why.
He had his cancer check in June just before our holiday, which again we had the ‘congratulations’ letter so we went away feeling good, if we could just get an improvement with his breathing everything would be fine, We bought him a mobility scooter for our holiday to Egypt which was a great help although he was unable to do a lot but lie by the pool at least we managed to get away and feel some warmth. Once we got home he seemed to get worse and was even unable to walk around the supermarket, I used to take him and I would go and do the shopping while he waited in the car, his quality of life had gone down so much, but he did enjoy going out for car ride to the countryside and see some fields and animals, living in a city it is not something we see very often.
In July the compensation for his accident came through and we decided to buy our council hose, hubby was worried if anything happened to him, (the motorbike accident made him realise he is not going to live forever and accidents happen), because I am only 54, I could be evicted from the house and be homeless so he wanted to make sure I was OK, so we started the process. The bank gave us a mortgage for the difference and after the discount had been deducted I needed a mortgage for £87K hubby used 10K of his money to reduce that amount so the mortgage payment will be the same as the rent we are paying. , we did tell them about the IVA and even took our CC in but they were not that bothered, the IVA was not mentioned in the credit reference reports etc.
By the end of September he started complaining off his back aching a lot so I bought a new mattress thinking that might be the cause as our mattress was a few years old. He also seemed to have periods of confusion which was worrying, and he started sleeping a lot more than usual, I put this down to him not getting a lot of sleep at night because of his back so he was dozing when he could. The Dr still had no idea why he was like this and I got the feeling he seemed to think hubby was exaggerating his symptoms etc. He thought it might be his heart as he had a heart attack in 2009 and he had got a very irregular heart beat. We were waiting for an appointment to see a cardiologist, this came through for Jan 17th 2017.
On the 23rd November I was due to have a parcel delivered, I had received the notification of delivery text so telephoned hubby who always was up by 7.15am to let him know, as with his hearing if he knew something was going to arrive, he sat in the living room keeping an eye on the front door so he didn’t miss it, as he doesn’t always hear the door knock. I couldn’t get him to answer the phone which was really unusual, by 10am I was getting into a bit of a panic so went home to find him still in bed, when I woke him he complained of his chest hurting so I rang an ambulance. The paramedics kept getting abnormal ECG recordings so they took him to hospital, even though hubby was adamant that nothing was wrong , the hospital had the same ECG problems and also noted he was very slightly jaundiced, they kept him in overnight and diagnosed that he had Gilbert’s syndrome ( I had to google it as well), it is a liver problem which can cause jaundice but there is no treatment and you have flare ups occasionally and then goes till the next one, the cardiologist checked his ECG and stated his heart was fine nothing to worry about, so on the 24th November they discharged him. During the next 2 weeks his health went down at a startling rate, he was sleeping up to 20 hours a day, he was only getting up when I came in after work and then only lasting a few hours before going to bed again, I was having to walk upstairs behind him as he was getting really unsteady on his feet.
On Tuesday Dec 8th he went up at 5.30pm (I had been home from work for less than an hour) by 6.15pm I could hear him calling so I went upstairs, he just said “ I’ve had enough now, get an ambulance”, I rang one and because his ECG was still bad etc they again took him to hospital, our youngest son came with me, the nurse had a real problem getting blood from him and they ended up getting it from his foot, which when she first got the needle in it oozed out like jelly crystals, we should have realised then something was really wrong when she said she hadn’t seen that before, but she was a very cheerful big nurse who just laughed about it and we assumed it was nothing to worry about as she didn’t seem that worried. As they were unsure what was wrong they decided to admit him to an observation ward, when I telephoned the next morning I was asked if he was always this confused, at long last someone else had noticed, I felt like I had been banging my head against a brick wall with no one listening to me for months. My work were fantastic and I arranged to go in at 6.30am every morning but leave at lunchtime so I could go to the hospital as the visiting was 2-8. I went in on the Thursday afternoon for the ward Dr to ask to speak to me in a private room, she told me his lung cancer had returned, she would not tell me which lung or how large etc until the respiratory people had done the rest of the tests and as soon as they arrived they would come and see me but it would probably be the next day as they had some more tests they wanted to perform on hubby, she also said they would be keeping hubby in until they had found the cause of the confusion etc as the lung cancer would not cause that. I explained what had happened 2 weeks previously with the Gilberts syndrome diagnosis etc and she apologised and said he should probably not have been discharged then without further investigation.
When I went in the next day within 2 minutes of getting there, I was taken again to a private room and told that the lung cancer had returned in multiple places in both lungs, plus it was in his bones, his liver, his kidneys, his blood and they suspected his brain but they hadn’t done the scan to check, basically everywhere, the prognosis was he had weeks more likely days. Hubby and I have always known each other’s end of life wishes, so I was able to tell them exactly what he would want, pain control, no unnecessary tests, unless it is going to save his life, if it would make no difference then don’t do it, no resuscitation at the end as it wouldn’t make any difference, and no treatment if an infection etc occurred as it would not make any difference to the outcome and would prolong it and just to be able to pass away with dignity and at peace with no pain. I told them this so they were aware of his wishes. I then had the painful job of informing my sons, family and friends. The only request we made of the hospital was could he be moved to a single room so he could die without strangers gawping at him and a nicer environment without other patients coughing etc. He was not in a huge amount of pain which was controlled at that point by only paracetamol , the hospital did not feel the hospice would be beneficial for him when he could get the same care there, so we decided to leave him there and not move him. We also had both said neither of us wanted to die at home, we did not want the memory of someone dying in a room which is what you would think of everytime you went in there afterwards, so him coming home was not an option either. I won’t give the details of what happened during the next days but hubby passed away on Dec 15th at 3.40pm. 6 days after we were told that the cancer had spread.
I have slowly been rebuilding my life, the house sale completed in February so I am now a home owner after being a council tenant for over 35 years, Hubby made sure I have been left financially secure so now it is a case of getting used to life without him, it is the hardest thing I have ever done it is like have an arm amputated, we were together for 32 years and it is difficult to somehow think like a single person again, shopping is the worst, just having to think about enough for me and no-one else, portion control on meals I am still cooking for two even though there is only me.
I do have the knowledge that I did everything I could for him and fulfilled all his wishes even down to having his eye used by the transplant team, as he had signed a donor card, I was surprised they could use the anything as the cancer was everywhere but apparently his corneas was able to be used. I received a letter from the transplant team last month, they went to help 2 people regain or improve sight.
I urge any of you reading this, please please have the conversation or if you don’t want that write down what your end of life wishes are, I found it so much easier knowing exactly what hubby wanted, and I have the calmness that I did what he wanted, there are no whats if’s which is such a good feeling, it has defiantly help with the grieving process. The only thing I didn’t know was the music for the funeral, I knew everything else so we just played 3 of his favorite songs.
I am so grateful we did the IVA, as with hubby's compensation I have been left financial secure without any debts.
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