Hi all,
I've been watching this group for a while and have been putting off writing this, because somehow, sharing this with a group of people who know EXACTLY what my family is going through, makes it more real. I can deal with the casual aquaintance or colleague asking me how things are going because my reply feels like a script of a story I've seen on TV.
My mum has stage four Stomach cancer. She's had four cycles of chemo (ECF), out of possible total of six. They've stopped because she was started to feel so bad, they decided she'd had as much as her body could cope with. It feels like we are on a countdown, but without knowing how much time is left on her clock.
My parents separated (and then divorced) over ten years ago and my mum was a total wreck. She started drinking a little more than was good for her and was verging on a breakdown. My father had left her with no income and no way to pay the mortgage and kept stalling on the divorce in order to get his lump sum pension and spend it before she could have her share. But that's another story. My then boyfriend and I decided to move it to the large house she was living in in order to cover the bills (which allowed us to save for a deposit of our own) and to support her. We became very close during this period, and when I have my son in October 2004, Mum seemed to finally come out from under the shadow my father had left her with.
Just after my son was born, my mum was taken ill and was diagnosed with pancreatitus, caused by a combination of not eating, drinking too much and having a lot of gallstones, one of which had got trapped near the pancreas, causing an infection. She was very ill, but a life long aversion to doctors/hospitals meant that once she recovered, she prefered to address her gallstone issue with diet rather than an operation. She stopped drinking completely and life got much better.
About two years ago, my mum started suffering with ther gallbladder again, she wasn't eating as well and she was suffering from really bad indigestion which at the time was diagnosed and part of her gallstone issue. In July 2012 she has another bout of pancreatitus and this time was persuaded to see a consultant and finally agreed to have her gallbladder removed. She had her pre-med at the end of November 2012, but on December 2nd, was rushed back to A&E with another bout of pancreatitus. she was discharged and readmitted three times over the next week and she became so ill this time, we thought she might not pull through, but she did and was discharged on Christmas Eve. The operation was scheduled for 14th February and while she was waiting mum started losing weight as she was so scared that she might eat something that might trigger another gallbladder attack.
The operation went ahead and she was disharged within 24 hours. And that's when things started to go wrong. 72 hours after her initial discharge she collapsed with a suspected liver bleed and was rushed back to the hospital. It turned out a small part of her lung had collapsed, but other than that they couldn't find a cause, although her blood results were flagging an infection somewhere. They only thing that sticks out as unusual about this time is that when Mum had her drainage tube removed after the operation, she was told it would be uncomfortable but painless, but in actual fact she found in excruatingly painful.
After a week on antibiotics, she was discharged and started to make a 'full' recovery. I think we had one week in March when she wasn't in any pain. Then 'it' started.
It started with increased indigestion and stomach pain. Blood tests still showed that she had an infection ' somewhere' and she was anaemic. She was already taking lanzoprozole for the indigestion and guzzling gaviscon like it was a soft drink. The doctor suspected a stomach ulcer and suggested an endoscopy, but mum wasn't keen so he suggested they treat it with medication and increased the lanzoprozole and told her to take gaviscon at regualar intervals.
Between the end of March and the middle of June, mum was admitted to A&E for severe gastric pain approxiamately nine times, at least three of which were by ambulance because she was so bad, I couldn't get her in the car. Only twice was she moved to a ward and both times discharged within 48 hours. She was finally persuaded to have an endoscopy - the consultant on the last ward she was on suspected both a stomach ulcer and an duodernal ulcer.
By this time Mum could barely eat anything without it causing pain. She'd gone from 11st 7lbs before Christmas to 8 stone.
On 27h June, she was readmitted to A&E yet again. This time, frustrated at the lack of a proper diagnosis, I flipped and demanded the cause be investigated. Mum was admitted and the consultant on the ward (who had not seen her before) promised that she would not be discharged until she had a diagnosis and a treatment plan.
On 2nd July, I was called to the hospital and we were told that the results of the endoscopy and the CT scan confirmed that my mother has stomach cancer. They told us that it was confined to the upper area of the stomach and that it did not appear to have spread. Her case was refered to the MDC team and she was given an appointment for 18th July.
We spent the time waiting for the appointment in shock, but totally reassured by the fact they seemed to have caught it 'early'. Reading up on it, this was a relief.
at her appointment with the consultant oncologist, I had loads of questions, but found myself totally lost of words, when he apologised that there was little that they could do - the cancer HAD spread (to surrounding tissue and lymph nodes), that it was inoperable and at stage 4. He wouldn't talk about timescale, he said he didn't like 'averages' . We went home in shock. On 29th July we saw another oncologist from the team and they confirmed that while they could only offer pallative chemo, they hoped this would give her more time and improve her symptoms. In the condition she was in, without chemo they gave her weeks to months. She was down to 7 and a half stone and not eating at all. They hoped the chemo would give her 2-3 months with an overall average of 6 months. Of course, they told us about the people that survived up to two years, with and without chemo, but warned us these were the exceptions, not the rule.
Mum started chemo on 8th August and as I said earlier, she's had four cycles. She lost a little more weight to begin with, but as the chemo started working, she began to be able to eat again and has gained weight - she's now just over 8 stone. The chemo did relieve a lot of her symptoms and the pain meds kept her pain in check, but as time has gone on, she's needed to use more and more oramorph on a daily basis to treat breakthough pain. She's starting to find that its hurting again when she eats, though not everytime. I'm scared that this is the start of her symptoms again.
She doesn't need to her oncologist again until 5th December. A lot depends on these next few weeks. The chemo finished on 7th November. They can't tell us how much time she might have left, but that six month prognosis is approaching fast. They have said that she is unlikely to still be with us for my brother's wedding next July. She will possibly still be here at Christmas. They can't tell us anything else, except that when it comes, her decline will probably be over the course of weeks rather than months.
My two children are heartbroken. My youngest in three and a half, and more perceptive that I had realised. He keeps telling me that he doesn't want Nanny to leave him, that he doesn't want her to be dead. That Big Nanny Ward (her mother) mustn't take her to the starts. It's breaking my heart that I can't reassure him that it will be ok. My eldest who is nine, has gone quiet. He is withdrawn and trying to be so brave. I'm supposed to be able to make them better when they hurt but I can't do that now.
Mum lives 50 yards from us so we see her every day. The children love helping her - especially when she's having her daily clexane injections (small blood clot on her lung). My brother lives a six hour drive away and he's burying his head in the sand. He only heard 'i'm fine' and thinks she has years. My extended family aren't much better - they all live 200 miles away, so its just me, mum, my husband an my boys. I understand being positive, but they need to be realistic.
I'm so scared of being without my mum. I'm scared for her, for me, for my boys. I've held it together for the last few months - I've been strong because Ive had to be, but know I feel like I'm falling apart. i start crying at the drop of a hat. I can't sleep. I've put on weight, due to not eating all day and then binging on rubbish at night. I'm trying so hard to keep staying strong and holding it together but its getting tougher. Its the not knowing.
I'm overwhelmed at how many people are battling with the awful, awful disease. so much pain.
I feel like i am already grieving even though she's still with us. We are making the best of the time we have, while we can.
Thanks for reading. I'm so sorry to read about your own losses and battles. I hope you all the very best.
xxx
