Ray123's blog

A lifetime of cancer July 2013

2013-07-02T21:49:19Z

Well here I am again - IT is back and this time it is very angry. Kidney, spleen, adrenal gland, pancreas and to add icing to the cake its in the liver again. This is only an update as we have been waiting on what the docs are going to do, if anything since 07th May, all up in the air again. 18 years is a long time dealing with this dreaded disease but hubby is not ready to give in yet. So the big bad wolf will just have to keep puffing....

A Lifetime of Cancer Sept 09

2009-09-19T23:53:22Z

Well it should have been cycle 4 this week but hubby was too under the weather to be treated, so he had a blood transfusion, which took over 9 hrs and eventually was brought home at 11.30pm. We thought it would all be over two weeks ago but this is the second time his chemo has been suspended due to him being too unwell. In all the years he has been being treated for cancer/s this 'new chemo' has to have been the worst in its side effects. Even the stem cell transplant was not as bad as this - chemo, surgery etc has never really been able to keep hubby down for too long but this one is nasty. The docs are going to reduce the levels of methatrexate down again next week as it leaves hubby with some bad problems, last week his mouth was so bad that nothing from the mouth washes to oramorph would give him relief and after about two weeks of a really horrible smell coming from his mouth and him being unable to even swallow water he went to try and clean his mouth and basically all of the dead flesh just fell into the sink. The good news is that the AFP is down to 24 after cycle 3 so hopefully it will drop to normal after cycle 4, and then it is on to the daily stuff again, not quite sure of the details yet but it will last another year so that will be three full years of chemo by the time that finishes. Please, please can we have a gold clock at the end of it all because it will be 15 yrs by then. A young man in the shops looked at hubby last night with that look of horror at seeing a chemo patient, I explained that hubby could not follow him at his speed because he has cancer. 'Oh, I am sorry', said the young man,'is it the first time?' he asked. 'No, this is nos 7', I replied in a nonchalant manner. The young man looked astounded and said, 'I have never heard of any one having it that many times, upto three times and then you die'. I thought to myself how little people know about what is now happening in the world of cancer, people are living longer and basically living with a chronic illness rather than critical illness.

The young guy patted hubby on the back and told him he thought he was some sort of hero. Hubby said 'no hero' just someone who is too frightened of the alternative.

Hoping next week goes to plan and all goes well.

A Lifetime of cancer - Today

2009-07-28T14:21:31Z

Well hubby is back in hospital for his second cycle of this regime ( never thought I would be hearing myself say that 14 yrs ago), which is now having ITs dreaded effects, you know, nausea - vomitting - sore mouth - piles etc etc. The two of us are feeling pretty low at the moment, this is something you never get used to even after seven relapses. It is like having your left arm cut off when you are apart, my brain which is usually quite intelligent suddenly becomes mush and I feel like a little child who is lost somewhere unable to find their way home. This bubble that surrounds our life can be suffocating at times, someone else is in control of everything you do, they make the decisions for you. I did however lose it last week at the hospital - I was fed up with the way hubby and others seem to be treated at times - so I ended up in a meeting with the consultant and the nurse manager and boy did I vent my spleen, but they did listen and they are doing something about the issues I raised. Like I said to them, I am not just fed up because of my hubby but I sit with patients day after day for 14 yrs and listened to them and their worries and yet the people who could help them do not seem to hear their worries. Simple things like having to pay to park at a cancer hospital, or being made to pay £2.35 for a cup of coffee from the new machine which was installed to generate monies for the hospital fund - seems daft to me that a fund for cancer patients is being funded by cancer patients, alot of these people have money worries due to their circumstances, it is not a day out and should not cost people to be treated. I sat for the first time last week in the area for patient transport and I was with an elderly gent who had had 5 mins of radio and then had to wait over 6 hrs for transport, which seemed insane as people he lived by had already been taken home early, he told me that some week they were together and other weeks it was like this. The man felt very unwell and uncomfortable and yet was sitting around for hours when he should have been tooked up in bed. There must be a better way for these people. Gosh I could go on forever but at least the hospital listened to me and seem to have taken on board some of the issues. I was told that the hospital wished more people would speak out because until they do nothing will change. These are people who are scared and lonely, they are not a comodity and the hospital should not treat it as a business. I do understand the need to raise monies for the hospital, I do not feel though that people who are already undergoing financial pressure should be made to suffer. 14hrs at the hospital can become quite expensive! A worry most of us do not need.

A lifetime of cancer - 2000

2009-07-02T00:38:41Z

All was well until January 2000. Hubby had been back at work since August 1996, he had gone for all the checkups and each time all was OK, but he had put up with a hernia since the first op and in January 2000 he went to see the surgeon to discuss an op. It was the first time that I did not go in the room with him - call of nature - when he came out from the consultation he was grey. I asked what was wrong but all he could say was get me out of this place. His eyes were full of tears and he seemed to have aged in that moment. Outside the hospital he told me what had transpired - when he had finished discussing the planned op he asked the doc how his blood count from the July before was, just out of interest. The doc flicked through his notes and the colour drained from the docs face, 'Oh ....., your cancer has been back since last year'. At that point the doc told him to go home and wait for a call from the oncologist, they would have to look into this. I was not happy with this and when we arrived home I called the oncologist, all hell had let loose, come back next week was the reply and we will sort this out. The following week came and we found ourselves sitting with the surgeon and the oncologist, they were telling us how the junior doctor had been informed of the raised blood count but had forgotten to do anything with that news. Hubby would need scans to see how far it had gone and then they would discuss it in more detail. The only thing that kept going through my mind was that these things happened to someone on the news, not us! So after the scans we went back again, the bad news was that hubby would now need to undergo intensive treatment and a stem cell transplant as the docs could not be sure that his blood wasn't riddled with cancer cells due to the time lapse. We asked the hospital how this could happen to a patient that was under surveilence and we asked for support. The reply we got back was that if we wanted answers from the hospital then to take legal action and no support was forthcoming. Could this get any worse?

A lifetime of cancer.

2009-06-19T17:36:01Z

Once upon a time there was a young man who had been married to his young wife for four years, their life was full of hopes and dreams for their future. They had a toddler and a baby and they looked forward to all the years ahead of them as a family. They were good people, they did no one harm, they had good careers, life could only get better with time. They dreamt of a day when they could travel the world together, their children would be grown up and leading good lives, so they would be able to go to see the world. They planned that they would do it in alphabetical order, and they giggled at the places they would go with all the strange names. Life could not have been better. But then out of the blue came the 'big bad wolf' - Cancer was his name - and he seemed determined to huff and puff until he had blown the young couple away! He was out to destroy all of their hopes and dreams. Would he succede? That young couple was us. Everything in life was good, we had just had a baby some eight months before the diagnosis and we had a three year old as well. Don't get me wrong we struggled with the things young, married people do, finding the money for the mortgage, clothing the family etc but all that was OK because as we said there was always someone worse off than us. I remember the day hubby was diagnosed as clear as though it was yesterday. He had gone the hospital for a check up because of a car accident he had been in some four months before, that same day we received compensation from the other party, it was two weeks before Christmas and the money would be handy for the kids to have a good time. I was in our kitchen washing the dishes and the tv was on, the programme 'This Morning' was on and a lady who had left her family because she was dying from cancer and she did not wish to put them through it, was being interviewed. The tears were streaming down my face as I listened to that woman speak, how did someone cope was all I could think. The next moment the back door to our home opened and because I was crying I turned to face the sink - hubby used to say I was too emotional so I did not want him to laugh at my distress - all was quiet as he walked into the kitchen, he did not speak, so I turned to see why and the look on his face will stay with me until the day I die. 'I have cancer and they want me in hospital on Monday', he said. I remember feeling like the world was starting to sufficate me, the room seemed to be getting bigger and I felt like I was in a void. This did not make sense to me, four months before the docs had said he was alright and to go home and have another baby, he was only going for a check up and to be discharged. I also remember thinking that doctors did not tell people they had cancer when they where on their own, never mind let them drive home with that news. I kept waiting for the punch line to come out of hubbies mouth but it did not come and from that day forward our life was turned into a chaotic mess. Little did we know back then that this would become our life for the next 14 years. Hubby went in for surgery on 11th December '95, the surgeon came to see him the day after the surgery, I was sat at the bed with one of hubbies old school friends. I remember the doc telling me we had to leave as he wanted to discuss things with my hubby, I was that dumb struck that I actually got up to leave and it was the old friend that looked at the doc and said she's his wife! 'Oh', came the reply, 'I thought she was your girlfriend, so sorry'. He told hubby that it looked as if they had got it all and that he would only need a week of chemo and then back to normal. He was going to refer to a cancer unit but did not forsee any issues. Oh, how wrong he was! On the 22 December, hubby was told that the scans had not been carried out correctly at our local hospital and hubby actually had another eight tumours and he would need 6 cycles of chemo and then more surgery. Could it get any worse? That Christmas was one of the worst we have had, the kids were too little to understand and everyone around us was so upset that all the festivities turned into a wake. 4th January - Off we went for the first week in hospital for chemo, we had never been in a hospital like it, but local knowledge from when we were kids was that if you went in there you were not coming out, so we were obviously terrified. The first sight to hit us was a chap who was totally green in colour and across the bed form him was a young downs syndrome lad, who did not understand what was happening to him. It was so upsetting that my sister in law had to leave the ward. I had to try and be strong for hubby, but all I wanted to do was to run and never look back but my heart would not allow me to. Hubby was linked up to a drip and then it started, the sickness - back then the anti sickness was not like today, it actually made you vomit - the hair falling out, the sore mouth, the piles, the weight loss until in the end hubby looked like a person from a concentration camp. The chemo lasted 16 weeks and even now it is hard to disquingish one day from the next, the only day that sticks is the day of our childs 4th birthday, the nurses bought a cake for him and because it was easter by then all the patients sent to the shop for eggs for him. We both felt distraught at our child having a birthday in those circumstances but he had a lovely day, the patients and staff went above and beyond for us, thinking back it was lovely really and it taught our child about the kindness of strangers. I think somewhere in that 16 weeks we just shut our minds off to what was happening, we knew he had to have the chemo and come out the other side and that was all there was too it. Naive maybe but we coped. Three weeks after the chemo ended we went on holiday, a break before the surgery. Hubby had a full head of jet black hair on his passport photo but when we arrived in Spain he was totally bald, we got stopped by security and boy it was fun trying to explain that one when none of us spoke Spanish, but in the end he seemed to get it and let us go through customs. Two weeks later, the sun had made hubbies hair grow quite fast and even though it was very thin he looked different again, low and behold we got the same officer coming back and he did end up laughing with us at that one. Hubby then went in for a RPLND, this is called surgery in the UK but in the States it is known as butchery because it is so traumatic. Again it is funny how the brain shuts out the bad memories, we laugh about how hubby thought he was a chicken being cooked (he had one of those metallic sheets around him after surgery and was on a morphine drip), he opened his eyes, looked at all of us distressed relations and said, 'turn me over in 30 mins and baste', with that he became unconcious. I was so proud of him at that moment, he has such a strong sense of fun. Eight weeks after surgery, hubby told his medics he was going back to work and that we were moving home. At first I thought he was mad, but it was his way of getting back on the horse. The consultants had told us that if you went more than three years without relapse of this type of cancer then you would be clear. So that became our aim. We got passed that time and everything looked great for the future. Unfortunately fate had more in mind for us, but that is for another day.