I did say that my next blog would be about how my most recent diagnosis came about so here goes.. Now that I am sitting here thinking about what I am to write I think that I need to go back a little further than I originally thought. As mentioned previously I am generally quite aware of what is going on with my body, so perhaps I should have thought back late last year that something wasn’t quite right but I guess without the lump being felt then it would not have been able to be diagnosed anyway.
From July last year I had a reoccurring pneumothorax (punctured lung) on my left side. This has not been the first occurrence and over the years my lungs seem to have become a little more susceptible to these. Although my lung had not collapsed enough to require hospitalisation it did cause enough grief in the fact that I was a lot shorter of breathe, in a little bit of pain especially when trying to go to bed, was tired on a regular basis and it impacted on my life in the fact that I had to take it quite easy and I was also unable to fly. I had five occurrences of this in total until February and it may have been that each time my lung was just not given the right time to heal but I had also had quite a few family emergencies within that time and believed that the stress I was under played a little on my ability to heal.
In November/December I decided to have some elastomeric treatment at home (Intravenous (IV) antibiotic distributed over a 24hr period by a balloon type device) we believed my lung function to be down but were unable to test due to the pneumothorax, my chest had been grumbling along with sputum increasing and I had periods of just feeling generally unwell and the on and off again pain from my lung was getting a little frustrating. Normally I may require hospital IV treatment but I do tend to be quite stubborn and try my absolute best to stay out of hospital. So 2 weeks of treatment at home with daily physio and I felt a hell of a lot better, not as great as I would normally feel after such treatment but significantly better than I had. A few weeks passed and if previous history was to be I would normally be feeling on top of the world and have improved on my lung function. This time I found myself at my regular physio session saying that I just hadn’t got that remarkable improvement and I just didn’t feel any better than I had. We went through scenario’s that may be causing me to feel unwell and thought that a lot had to do with my environment. We had put a family pool (indoor) into our home when we renovated and I believed it may have been causing havoc on my lungs (I still believe this played a significant part but perhaps was not the only instigator ).
My husband made changes around the home in hopes that it would help. But come March I was still grumbling along it felt like I had two weeks of feeling good and then 2 weeks when I didn’t and it just kept playing on repeat. One night when showering before bed I was drying myself and rubbed the towel past my chest I noticed that it hurt. I did it again and again it hurt. I looked down expecting to see a nice little pimple or bite but could not see anything. I had broken out a little on my chest anyway (my body tends to break out on my back and front of my chest when I am starting to or have a chest infection, it’s always my 1st indicator that things are not 100%), So I went to bed and told my husband I think I have the biggest ingrown pimple brewing as my chest is quite sore. I didn’t think anything of it.
My next appointment with my CF team I decided to bite the bullet and request a hospital admission, things had not improved and I knew the only way to sort my pneumothorax and get on top of everything was to undergo hospital IV treatment. I completed 2 weeks of regular treatment I received in hospital and in that time had noticed that the so called pimple had not gone away. It also hadn’t appeared above the skin. It certainly wasn’t as sore though so I didn’t really think too much of it.
I had been home a week or so and going to bed one evening I had a joke with my husband and said to him “my breast cancer has not gone away yet!”. He replied with I don’t think that’s the way it works, is that lump still on your chest?. Yes it was! Again I thought nothing of it or what we had been joking about.
I went to my regular physio appointment again and was having a general discussion as I normally do with J. ( I will call her J, I would normally refer to her as my guardian angel as she has always been a major part of my life and seeing her most weeks for physio she generally gets a huge insight into my life). J and I were discussing recent events and I had made mention of hubby and my ability to forget absolutely everything and then I had mentioned the joke we had the previous evening. J then asked if there was a lump and had I had it looked at? How long had it been there? Why had I not mentioned it before? So I gave the details as above. J then asked me to go and get it checked and made me promise (she had obviously been thinking of my family history more than I). So I made an appointment for the GP for two weeks time.
Two weeks arrived and the GP had checked my lump advised that she was unsure as to what it may be and thought it was best to have an ultrasound. An ultrasound of my groin was also arranged as I had had a hernia that appeared almost 2 years ago and was only now getting larger and thought she would do a check on everything. So within a week of leaving the GP I had appointments with Womens Imaging and Radiology Tas. My Appointment with Womens Imaging was relatively quick, I had gone in and they decided because of my family history (we had had instances on both sides of the family of Breast Cancer) that they would also do a mammogram (I was dreading this one as I had breast implants almost 3years ago, I’d heard so many things about mammogram’s I hoped that they weren’t going to pop them). Mammogram was completed and only showed my lump slightly as it was sitting quite high on my chest above breast tissue. Ultrasound showed the lump and enabled them to measure etc but they couldn’t determine what it was. They referred to the Dr and the Dr stated that they would like me to come back for a biopsy as they couldn’t determine what the lump was. Normally they would have a rough idea but this one just threw them! They had said they were 90% sure that it would be nothing but because of the family history they would rather be 100% sure. My appointment was booked for the following Thursday. I didn’t really think anything of the appointment coming up and just got on with day to day. Thursday came about and being the sook that I am when it comes to needles I rocked up to Womens Imaging with patches of Emla cream across my chest. For those who may never have heard of Emla it is a topical ointment with anaesthetic great for use on skin when you are about to have needles! Hubby was with me for support! Thankfully I had used the Emla in the right spot and my needle biopsy started. 3 needles and whilst I had used Emla and they had used local anaesthetic the fact that they can’t put the lump to sleep was not so nice. It was decided that they would then need to do a core biopsy to ensure they had enough of the lump to test. Ouch Ouch and Ouch although by the third time they used the core tool you don’t really feel it as its still stinging and hurting from the first two goes!. Procedure was completed and they advised that we would have results possibly Monday as the weekend was coming up!.
Friday hubby and I dropped Brady to school and then decided to head into Salamanca (popular food spot in Hobart) to get some breakfast and enjoy a coffee. A couple of friends headed down also. Whilst having breakfast I received a phone call it was from my GP office asking if I could come in that afternoon as the Dr wanted to discuss my results. I questioned the receptionist are you sure? I only had the tests done yesterday surely they are not back yet? She advised that they must be back as the Dr wouldn’t have requested an appointment otherwise. Before hanging up she asked if I could please bring someone else to the appointment with me! I hung up the call and immediately tears came to my eyes! I knew the results couldn’t have been good! Who asks to bring someone with you to a Dr’s appointment? I’ve obviously dealt with a lot in my life and have had many not so great discussions around my health but I have never in my life been asked to take someone with me to a Dr’s appointment. I turned to my husband and he asked who was on the phone? I replied Dr’s office we have an appointment this afternoon! He could also tell by my face that I thought having such a quick result was probably not great. I then had 4 hours before my Dr’s appointment! 4 hours for my head to go off racing and for me to be thinking of all sorts of scenarios, so much so that when the 4 hours was up and I was sitting in the Dr’s room the only feeling I had was complete nausea! And I was right to feel that as soon as she sat down the diagnosis was out! I cried. Of course I cried but not a lot as I felt like I knew this was coming. I think maybe they request you bring someone else so that you are already thinking that it can’t be a great diagnosis!. I think we were in her room a whole 10mins and then out into the world of disbelief!. We walked out to the car and Hubby looked at me and said “what do you want to do” (knowing that we had to pick our son up from friends as they had collected him from school for us when the Dr requested an appointment right in school pickup) thankfully we were only seconds from the nearest pub! Pub please I need a tequila!
We went to the Pub for a quick drink. We then went to the bottle shop and grabbed a variety of alcohol to take to friends. On arrival our son was waiting and it was very hard to keep any emotions from our face I was not going to be having that conversation with him today and perhaps not any day soon. Even with CF he knows mummy is sick but doesn’t have any idea on the details and I prefer to keep it that way whilst I believe I am reasonably healthy as I would prefer he has a chance to live his childhood and not worry about what mummy might be dealing with. We had tea and quite a few drinks (I believe one would call it drowning my sorrows!) I had called my best friend to come and visit to explain my diagnosis to her and she also took Brady home with her so that I could continue fuelling my feelings with Alcohol. (Which I might just say I don’t highly recommend!). I would go as far as saying I had drunk myself stupid and made myself quite sick. But on a positive note it brought out all the emotions I was feeling! After a long wait for a taxi we arrived home to bed where I spent majority of the next day and was so so sick. Whilst I don’t recommend drinking that much I guess in some way it helped me work through the news and after feeling sorry for myself because of my hangover not my diagnosis I was able to pick myself back up and get on with what was to come next. Including telling my family…………..