Once you or a loved one becomes seriously ill, it is amazing how much extra knoweldge you collect. To be fair, I didn't know what the Bile Duct really did but now Gary had an issue with his, I made it my business to find out everything I could. Many a night Gary & I would lie side by side in bed, each of us staring intently on the mobile screen researching everything we could. Depending if I was happy or sad would determine if I would be looking at cures for cancer or "how to cope with the loss of a loved one". I know the latter was being extremely pessimistic but as I said before, if I thought the worst, I really believed it would not happen. Bizarrely, Gary and I never spoke about our late night Googling sessions. Neither of us acknowledged the findings, particularly if they were not favourable. I guess both of us wanted to battle the demons in our own way. Gary's was to remain upbeat and positive at all times. Mine was to be pratical and be forward thinking.
After the diagnosis we had a couple of weeks of waiting to find out when the treatment would start. Luckily it was Easter Holidays so with Nathan at the Grandparents, Gary and I spent a week bobbing in and out of Maidstone Oncology to get the paperwork and treatment starting.
Now this is where I become a little bit selfish (so please bear with me). Being almost 9 months pregnant now, I was used to the fuss being made about me. It was therefore a shock when suddenly I became invisable (no mean feat considering the extra bulk I was carrying). Gary went to have his pic line fitted (basically a connection into the veins for the chemo to be attached to, to save being injected at each session). I went with him and as Gary was offered tea, sandwiches and a comfy chair, the young fat one (Me) was virtually ignored. I remember waddling as quick as I could down the hospital corridor as Gary and the Chemo nurse stridded ahead talking about treatments and chemo routines. In my pregnant state, I needed the loo quite often but the toilet in the Chemo ward was only for patients. Fat women with babies in their tummies had to waddle back up to the main reception and search for the toilets down there. In my defense, my hormones were all over the shop but I recall feeling really put out that nobody was interested in me.
The whole act of putting me 2nd was strange for Gary too. All his life, Gary put me first. So, to suddenly be the focus of attention was a strange scenario for him. Those who know Gary would think this was odd. After all, trying to get a word in when he was on one of his infamous drinks at the bar session was virtually impossible. However in the world of hospitals and Doctors, Gary would have prefered to be anywhere else and thus was strangely quiet.
I promised Gary I would go to all his Chemo sessions, so together we set off one Thursday morning to find out what all the fuss was about. This was my first visit to Oncology and I don't think I was really prepared. Oncology at Maidstone has it's own entrance. We lived just around the corner from the hospital which was a godsend. My heart went out to those patients who have to travel miles to get there. There must be nothing worse than having to go through the trauma of the Chemo each week and have to travel a fair distance for the pleasure.
So, back to the story, we walked into Oncology and immediately I felt a rush of heads swivel in my direction. I guess it is not every day the patients see a heavily pregnant lady in this part of the hospital. The lady on the Reception was lovely and over the next few months she knew us rather well, calling Gary and Darcey by name. What about my name, I hear you cry. Don't forget, I was invisable and usually only refered to as Gary's Wife or Mrs Molloy.
Reality really hits you when you arrive in Oncology. There are patients waiting for blood tests, various tanoy announcements for CT Scans and then names called out to head down to either the Radiotherapy or Chemo ward. My first thoughts when I walked into the waiting area was just how many people were there. I know Cancer is a very well known illness in all its various forms but until you sit in Oncology waiting room you don't really understand how many lives it affects. The majority of the people there were over 60 and I did feel a little bit of an anomilie. My other first thought was that most people had hair. Now, this is probably a bit of a weird thing to say but I automatically thought that Cancer = hair loss. Later in our Cancer journey (I refer to our journey as we were both affected) both Gary and I realised that hair loss was due to the Chemotherapy and it depended on which Chemo you were given.
Gary's name was called and we headed downstairs to the Charles Darwin ward. Gary's new home for the next few months. After being weighed and measured, Gary was escorted to a large comfy chair to wait for the nurse. I hovered in the background carrying coats, bags and newspapers and looked around in the hope there was somewhere I could dump everything. I noticed there was a small plastic chair next to Gary's throne, so I perched there.
It is at this time that I must mention the staff at Maidstone. Everyone has their own opinions of the NHS and mine is nothing but favourable. The staff in the Charles Darwin ward were happy, infectious and talked to the patients without any condescending voices. Considering the hours they put in, there was always a smile and they made everyone feel at home. Gary immediately perked up when the nurse came over and opened conversation. Gary loved to talk and now had his private audience for the next 8hrs.
I meanwhile, had lost the ability to talk. I looked around at his fellow ward mates, each with a partner perching on the plastic chair. Some looked nervous others bored. Their partners all trying to keep up a polite conversation but with the haunted look of somebody with the world on their shoulders. It was a very surreal place to be. I tried to talk but my voice kept switching to a high pitched squeal as I hid back the tears and the extremely large lump that kept forming in my throat.
Initially, Gary had to attend hospital once every 2 weeks for Chemo. The session took approx 4hrs and when he left he had to be attached to another chemo drain for 24hrs. This was weird to get used to, particularly at bedtime but we soon got used to it and after a while I didnt notice the tubes coming out of Gary's chest and the baby size bottle that was sleeping next to me. Before each Chemo on the Thursday, Gary had to have blood tests on the Tuesday to check that he was well enough for the next session. Every other week he had a consultant appointment or check up meeting with the Oncology nurse. In between these days, Gary suffered sickness and extreme tiredness. To start with I remember thinking that surely Gary could go to work and still attend Hospital. However as the sessions continued, I realised this would be impossible. Gary was using all his strength to get through the Chemo sessions, then once home he had me, Nathan (and very soon Darcey) to cope with.
It was after one of the first Consultant visits that we were put in touch with MacMillian. There is a MacMillian office in the Oncology area of the hospital so we went around for some advice. I say "we" but once again my lack of speech took over and all I could do was mumble hello as Gary explained the diagnosis and our situation. We basically wanted to know what financial help was available to us. I was off on Maternity Leave and Gary's statutory sick pay was pityful to say the least. We went through all our finances and the MacMillian person said sadly, that we were probably not entitled to anything. "But we won't be able to pay the rent" I exclaimed, shocked that my voice had returned. "unfortunately the benefits you are entitled to do not take account of your outgoings. You may need to move to a cheaper place".
I could not believe this. Not only was Cancer here to ruin my husband, because of the illness we would need to move house and put even more pressure on the very fragile family that was very slowly being torn apart. I stroked my belly again. "but I'm almost 9 months pregnant" I exclaimed. "irrelevant really" was the reply.
I was about to break down and let the tears flow when the Macmillian adviser casually mentioned that the only way to get access to the benefits woud be if the Doctor could get Gary a special form. "it's for those with a terminal illness, usually if there is only 6 months to live. Your Doctor might be able to get one but it will obviously depend on your situation plus you may not want to ask for the form as you may not want to ask that question".
Then Gary spoke....."you mean this form? Yes the Consultant gave it to me, I have it already" "Oh, great" said the Macmillian advisor, in which case you can apply for.....".and she reeled off various benefits. Now I don't know if Gary realised what he had just acknowledged but I certainly did. If we had "the form", this meant only one thing. The Doctor's think my husband is going to die. My son will be without a Daddy and my unborn Daughter may never even see the man that made her. Silent tears, if ever there was a time for them to flow, then right there in the Macmillian office, I must have cried a river.