Road to recovery
I was due to have my surgery on the Monday but got a phone call on the Thursday to go into hospital early and have my op on the Friday.
Of course I jumped at this as the sooner this was gone the better. I went first to theatre and had agreed with my husband there was no point him coming to the hospital that night as I’d be groggy.
bearing in mind I had the back of my head shaved, skull drilled into, opened like a hatch door and the tumour removed which is a pretty big op. You can imagine everyone’s shock when I started texting jibberish texts from the ward late afternoon, informing my hubby to bring me food! A few hours later I was propped up in bed eating chicken sandwiches and minstrels Although I was still debilitated with catheters and drips.
Saturday I managed to get out of bed and was just wanting to get home by now, so on Sunday morning I knew my surgeon was doing the rounds I got myself up and showered and was sitting up in bed fresh as a daisy when he came in. He agreed I could go home. So two days after brain surgery I was walking out of the hospital and going home to my own bed and family.
I continued to recover well from the surgery and managed to come off the steroids a week later and reduce the painkillers. I had heard and read a lot about Stereotactic Radiotherapy which is a very precise radiotherapy using laser beams to pinpoint the exact location rather than Whole Brain Radiotherapy which has severe side effects as it targets the whole brain. Gammaknife and Cyberknife are the widely used terms however these are the brand names of the instruments which perform stereotactic radiotherapy.
I was very keen to get Gammaknife just to mop up any cells which may have been left after the op, however the Multi disciplined team (MDT) did not agree so unfortunately I had to put up and shut up, even though I did refer my neurosurgeon to a paper which had been literally been published and presented at a Radiology conference in Boston to say that Stereotactic Radiotherapy should be given after all surgery as a mop up. To be fair to him he knew what paper I was referring to and agreed with it however his hands were tied as the hospital I had surgery in did not offer Stereotactic Radiotherapy so he had referred it to another hospital and it was that MDT that had refused me Gammaknife. but my follow up plan was to have 3 month MRIs to monitor for anything new my next one was due in Dec.
As I continued to heal well I started to have major headaches, I lived on Naproxen anti inflammatories so of course I was anxious that something else was going on, however I did get reassurance from my neurosurgeon when I had my six week review when he explained to me that he had cut through all the nerves on the back of my head so it was completely natural that I was having headaches.
I had made the decision that I would return to work in January so in November I attended a meeting with personnel who told me I had an option to apply for I’ll health retirement. I was sort of taken aback by this as I was a career person and had worked since I was 14. I couldn’t imagine not working so I dismissed the suggestion and said I fully intended to come back to work in the New Year.
Over the past few months I had put on a lot of weight with the steroids I had been on so I decided now I needed to start excercising and joined the gym at the local leisure centre. I went to the fitness suite and started to swim again. I managed one Pilates class then started having back pain. This went on for about a week and seemed to get worse at night. Of course anyone who has had cancer will understand how I had myself convinced the cancer had spread to my spine. I had myself so worked up I contacted my breast care nurse who I had seen once since my secondary cancer diagnosis. Yes while I’m on the subject of the breast care nurse (BCN) I rang my BCN in September to get an appointment to talk about my secondary diagnosis and she didn’t even know I had been diagnosed with brain mets! Talk about lack of communication or a case of my secondary diagnosis not being important enough to be discussed at a MDT meeting!!! As I’ve probably said before the difference between being diagnosed with primary breast cancer and secondary is night and day. Primary breast cancer there’s a cure secondary breast cancer there is not. Since my secondary diagnosis I have started raising awareness and fundraising for Second Hope www. Secondhope.co.uk which is a charity set up and run by women with secondary breast cancer specifically for support and research for secondary breast cancer. The support I have been offered by the health service since my secondary diagnosis has been non existent!it is absolutely shocking and only I have been proactive in finding my own support groups I would not know of any. Therefore anyone women who is not on social media or the internet must feel extremely isolated.
There is a general feeling amongst patients that the care and support available to women with secondary breast cancer is second class which is so wrong and needs to change. I am determined to highlight these issues and lobby government to ensure women who are most vulnerable with death sentences hanging over their heads are treated equally to primary diagnosed women.
Ok getting back to my back pain my BCN told me that she had spoke to Dr J who said if it was that bad I should go to A&E. So after another night of taking Naproxen Diazapam and codine I went to A&E. I must say the Dr was very good and thorough and sent me for a MRI.
After a few hours wait I was called back into see the Dr who informed me she was due to finish her shift but wanted to see the results of my scan before she went and was pleased to advise that I had two bulging discs! Now I know to a lot of people this wouldn’t be good news but to me it was the best news I could get. So I left the hospital that day still in pain but a lot happier.
The next few weeks I went to physio and started preparing for Christmas. The last Saturday in November I received such sad sad news that a young beautiful lady in my Inflammatory Breast Cancer support group had passed away. Although I had never met her we had talked on line I knew her chemo had stopped working and she was going away with her family for a holiday to the Lake District then coming back to discuss options with her oncologist. She passed away peacefully with her family around her! It broke my heart I shocked at how quickly it happened and was so sad for her and her family. It also reminded me of the reality of what was ahead for me and my family and others I had met.
i had my follow up MRI on 17th December the same day I had my works Christmas party so after my scan I got my party gear on and went out for a good time. I was out the following day too with a crowd of girlfriends so it kept me occupied over the weekend and I didn’t think about the scan results much.
Tuesday 20th December I went for my appointment with dr J to get the results and to give him a Christmas present being the sarcastic cow I am I had got him a mug with a glass half full on it and No Doom and Gloom allowed in 2017! And a big sun with the caption “I’m a freakin ray of sunshine” As you all know by now he is so not a freakin ray of sunshine! So after he opened it and I told him that 2017 was going to be a positive year he told me that my brain MRI had showed an area of significance. However my neurosurgeon would see me snd explain everything to me.
i had already decided that I wasn’t going to tell anyone apart from my husband and B who was with me at the appointment and that everyone would have a really enjoyable Christmas including me and whatever was showing on the scan could be dealt with after Christmas.
I was starting to get used to this news I suppose it’s a case of the more you get kicked in the stomach the easier it is to take.