Thats what them bird watching people do isn’t it, ????
Oncology, Ornothology do they really sound similar, well they both start with a O and end with ology. I think the point i am trying to make and hopefully comes across in the photo is that i have probably known since childhood what a person who studys birds is called. I did not have a clue until two years ago what the study of the killer disease that is going to affect one in two people if you believe the tv adverts was called. If somebody had mentioned the word oncology or oncologist to me two years ago, i probably would have thought wrong pronunciation of bird watcher or twitcher. Little did we realise what these words relate to and the shear fear and terror that you feel when the cancer word is mentioned. I hope by sharing some of our experiences it can help somebody along the road if it ever comes your way. Two years ago i would have probably got about as far as this, thought, thats a shame and went on to read something else. Please stick with it because a little bit of info goes a long way when this scummy diesease comes calling, and it affects somebody who is held dear and important to you.
So we recon the start of this was about three years ago, Kim developed a niggly cough that would not seem to shift, the trouble was her father Maurice was suffering from dementia and his condition demanded a lot of attention which made her put this cough on the back burner. Maurice died three years ago september and this promted Kim to go and seek medical advice from the doctors. The doctors thought it was asthma and sent her to an asthma clinic for a diagnoses, the clinic said that she did not have asthma but as the steriod inhaler was giving her some relief they continued down this treatment route. We went on holiday in february 2017, I returned to work for a four week shift and first day back home i took Kim to the doctors as she was very poorly, the doctor arranged a chest x-ray and then a ct scan, she knew by this time there was someting serious wrong with her. Kim’s condition deteriorated and i took her to A&E at Derriford hospital where she was put into one of the examination beds, the doctor went away to have a look at her scan, when she came back she uttered the words nobody wants to hear ” I’m sorry its cancer”. Bang !! somebody has just hit me in the face with a sledge hammer, then came the tears and there would be lots of those over the next few months, this was just my feeling, god knows what must have been going through Kims mind. The next hardest thing was telling our two daughters, i told our eldest, Samantha and i am afraid that i left it to her to tell our youngest Carly it was just so hard. Welling up now even as i write this bit.
The next few days were like an unbelievable whirlwind of emotions , hospital, doctors and just dealing with people concerned about Kim. The doctors initially thought they knew what type of cancer it was and it had a high cure success rate but unfortunatley this was not the case. Lesson one for us ,there are many different cancers and all can be treated differently. Whilst Kim was in hospital they took a biopsy and drained fluid of her lungs which was making her breathing difficult,after a stay of about four days in hospital Kim was discharged with out any diagnosis of the type of cancer she had only that it might be in the lung or stomach, oh and i was given a demonstation by the nurse of how to stick an injection into her stomach, which she required daily to help thin her blood due to a blood clot. When we got home i think that is when it really hit Kim hard and she became a bit withdrawn and would not talk or see people. That is when we went to the macmillan mustard tree centre at derriford, they were so good and did their level best to help us with well being chats talking to a therepist and just being there for you. They have also people who help you fill out goverment forms for things like PIP allowance, again they are there for cancer sufferers and familes use them. Our daughter Carly has done three of the macmillan coffee mornings and raised over £2400 for them.
Time went on and Kim saw another consultant who informed us that the cancer was incurable but they still did not know where it started, so Kim had a breast MRI scan and then an appointment was made to see Dr Rebecca Goranova who has ended up as Kims main consultant, I must admit i wasnt that impressed when this tall lady with a mane of long flowing copper hair told us that Kim had an incurable cancer which was going to severly shorten her life. Brutal or what I thought, but after knowing Rebbecca for I suppose nearly two and a half years now we can truly say what a wonderful caring compasionate lady she is, who gives you the feeling that your care and comfort is her primary concern. So Kim’s diagnosis was stage 4 metastatic cancer of the unknown primary, probably lung but unsure, wow I thought we really need to understand what is going on here, so that is when I started frightening myself by reading as much as possible on the internett, with the intent of trying to understand a little bit of what was going on. So what does it all mean well cancer is split into stages where stage 4 being the worst, metastatic is that the cancer has spread, which then can be split in metastasis, the development of secondary growths and metastasces, where the cancer has spread from one site to another, cancer of the unknown primary really self explanatory. When the cancer does spread it likes to move to large objects ie: the liver, lungs, brain and the skeleton. You might hear the term primary breast cancer with bone metastasis, basicaly it means your breast cancer has spread to the skeleton but even though it has spread it will still be breast cancer.
What i would say is no matter how much emotions are going through your head try keep your finger on the pulse as to what is going on around you. We have found doctors and nurses to be fantastic but they are under so much pressure that things can sometimes go by the wayside and what a consultant might prescribe will not always come through on the shop floor.
Kim was admitted to hospital again after a routine appointment with Rebbecca due to the amount of fluid build up in the lung cavity, called a plueral effusion this is due to the spread of the cancer cells, which aggravates and causes the body to produce fluid. Kim was very poorly inbetween hospital appointments and i had to call the gp out, and knowing what i know now i think the GP should have admitted her to hospital then, as it was when Rebbecca did admit her they must have drained 3 or 4 litres of fluid from her lung cavity which was making breathing very difficult due to the fact that the fluid in her lung cavity would not allow the full expansion of her lungs, Kim was also prescribed her first chemo in hospital but that nearly didn’t happen due to a loss in commumnication from the consultant to the ward staff, nobodys fault just the shear volume of work that these people do.
There are a lot more things that i could write about relating to what has happened over the last two years but i dont want this to be like a book. Kims cancer was stable but we have suffered a bit of a setback recently where she suffered a siezure at home and had to be rushed into hospital where upon having a scan it was found that the cancer had spread to her brain, or technical term brain metastaces, bit shell shocked but on we go. Kim now has undergone whole brain radiation therapy and after speaking to Rebecca her oncologist she will be starting another chemotherapy treatment soon. Rebecca also told us she had other treatments that are available to her as well, so we left feeling quite positive.
I had returned to work after a year but more or less on a part time basis to work around the treatment sessions but it will have to go on hold again until we find out where we are heading.
As i said there is a lot more i could write but i think the things to take out of this is to stay positive, understand the terminology of what they are saying during your appointment with the oncologist, dont be afraid to ask any questions and stay alert to what is happening around you, it really is the biggest emotional roller coaster that is going to affect you, but try to stay on top of things, if you are not happy with a GP’s diagnosis get another one, there seems to be a lot of missed or late diagnosis about, I turned on sky news recently and they were reviewing the news papers, the first article being how GP’s are missing up to 60% of early cancer diagnosis, so being a nuisance is better that being dead. Anyway we are getting on with our lives, it can still be a bit emotional but i hope our story can be of help to somebody just starting the cancer journey. One last thing I would like to say is that the support we have had from family and friends has been outstanding and we like to thank you all from the bottom of our hearts.