Wednesday 23rd – D Day! Have delayed updating this cause my brain has been in a total spin. Bob and I arrive, I check in, so far so good. Other people then arrive, all men so in my head its prostate cancer day, well after all I am now visiting a medical oncologist. Hang on, one guy disappears, suggest to the loo I think, oh dear I really do have a
warped mind. Now my husband disappears, oops is this catching, no, he’s officially working so has to duck out to take a call. So now we are down to 4, me and 3 others. 1 middle aged man and 2 younger guys who I decide are twins with one just very thin from treatment. Naturally me being me, have to chat, easy opening, “is there always a delay this long?” well we are waiting ages, older man replies that this is his first time in these rooms, again I think, newly diagnosed, but he continues to say that he has been attending John for the past 4 years but usually sees him in the hospital. My twins, ah I am so wrong, they are brothers, John is treating their mother and they are in to review her situation with him. Oh God, stop dreaming and making up why all these people are here, still it keeps my brain occupied. Eventually after an hours delay, Sinead, John’s oncology nurse calls me so off Bob and I go. Same bloody questions again, how many times do I have to keep repeating myself, I like to chat but this gets boring especially when it’s the same person asking them. I’m weighed, ok haven’t put on anything despite being completely
immobile nor have I shrunk!!! She eventually takes off and finally the man himself arrives. It is important to me that I like this guy as I suspect we will be seeing a lot of each other in next while. He starts, hang on till I find my brain please, ok I’m present and correct continue. Oh oh this isn’t good, plan was to move forward with a PET scan, but my
insurance company have decided since the beginning of February that while breast cancer patients can have multiple PET scans I am only allowed one per lifetime. This I find extraordinary and wondering if my brain has flipped I actually ask him to repeat himself. Why is my cancer any less serious? I know it’s not, actually I know it’s even more difficult to get a handle on than breast cancer. This can’t be right but it is. John says that at some stage I will have one but he doesn’t want to order it yet because of what’s coming. The excitement, have I been declared such a brilliant patient that they’re going to give me a free face lift, with liposuction and Botox for life, come back to earth you’re dreaming again! So now the serious stuff begins, my lymph glands are apparently lumpy and they were in the scan prior to surgery too. This could be because of the biopsy which was done on the 6th but he’s not so sure. He’s going to allow me a few weeks grace then I will be called for an ultrasound of the lymph nodes in the groin area with or without a needle biopsy, that pleasure will be decided on the day. Following that I will be referred to another surgeon who will admit me to perform a sentinel node biopsy or a lymph block removal depending on the ultrasound results. Then I will return to see John and we will discuss treatment. The drug of choice is Ipilimumab which due to the state of the economic situation in this country isn’t available here yet, further down the line it
might be a possibility, let’s hope I’m still bloody well here to try it. The best form of treatment for me is genetic, however, it is extremely unlikely I will be accepted onto this programme at the moment either, there is a meeting on 4th March when my case will be
discussed but I’ve been told not to hold my breath – that’s funny I feel not I haven’t actually been breathing at all during the past 20 mins. John continues to discuss the possibility of lymphedema, Bob now completely lost so in fairness explains to him in exact
detail what it is, I know what it is and really don’t need/want to hear it again now. So we’re back to the interferon. The plan is to get me to the maximum dosage which is 9 million units injected daily. I start at 2 million 3 times per week, with dosage increasing by 2 million also frequency to see how my body can tolerate it. There will be regular blood tests and scans, flip I’ve absolutely appalling veins. Some weeks the dosage may have to be reduced then increased again. When I get to the highest dose I will then be on it for a year which in effect means that I will be on interferon for 15-17 months. Help someone; I’m now on the floor. When this bloody thing came back I was prepared for surgery, knew it would take a few months, then heard about the interferon, ok so that’s this year gone but the way he’s talking about it this is going to go on for most of 2012 too. I’m not happy!!!! Actually that’s an understatement I’m completely shell-shocked. John said it is the only chance I have of it not returning but did also say that there are no guarantees this will work and that some oncologists don’t recommend it as feel the side effects outweigh the benefits. However, as this is my 6th recurrence and having such an unusual history for someone so young he feels it’s worth a shot but still keeping the Ipilimumab in the background. He brings me to his secretary, where Sinead with the big sympathetic eyes, go away, is there, I ask her can I drink while on interferon. She now thinks I’ve
totally lost the plot!!! I’m in such a daze I forget to pay, the secretary reminds me and for the 2nd time I’m picked up off the floor when I hear his fee. I do ask what the next one will be, half the cost for a repeat apparently, well that’s ok then, well no not really but don’t
have any choice.
Off into Eccles Clinic and my 2nd man of the day, Denis, for dressings change and review.
My head is just spinning, I know the silver nitrate is out again, I ask about golf, I ditch the crutch and leave. I really can’t believe all this just can’t take it in. We head off, me walking unaided, ok it’s sore but I can manage, to get support for my knee to allow me play golf. My big plan now is to get as fit as I can and to improve my stamina so hopefully interferon won’t affect me too badly.