It's taken me a while to be strong enough to share my story and I’m sorry if its too long, but this is the only place I’ve found where I feel that I can share it and that people will totally understand. I hope that by doing this, it will help the endless thoughts that go round and round in my head, constantly re-living the situation and bringing me to a point that I wonder if the pain will ever ease and I’ll be able to carry on in a normal way again (whatever “normal” is).
My mum collapsed on the 31st October and was rushed to hospital where she was mainly unconscious for the best part of 4 days due to low sodium levels. They managed to sort this, but couldn’t tell us what the cause was, and whilst she was tired and weak, having had pneumonia and a kidney infection at the same time, she was doing ok and was up and out of bed helping other patients with their meal trays (that’s how mum was, always helping others).
Before they discharged her, they wanted to do another scan, and from that they advised us that they’d noticed something that, could possibly be cancer, was having an impact on her kidneys, and she needed to be referred to urology.
Mum was discharged and we duly waited for the appointment which came through at the end of November, where they advised us that there was a blockage in the tube to one of her kidneys, they couldn’t tell, but it could be cancerous, so the best thing to do was to remove the tube and the whole kidney. This seemed quite drastic but as her other kidney was healthy, mum signed the forms in the hope that this would solve her issues and we went home to wait for the appointment for surgery.
This never came, the next appointment was back at Urology at the beginning of December where they told is that another scan had showed that mum’s other kidney was now showing signs of stress, so they believed that it was more likely to be an infection and they would prescribe antibiotics. This actually came as quite a relief, and we went home thinking that we would see some signs of improvement in 7 – 10 days.
Unfortunately, this wasn’t the case and shortly after starting the antibiotics mum kept being sick and was feeling really nauseous. She wanted to give the antibiotics a chance so when a couple of days later things hadn’t improved, we contacted our assigned nurse in the urology dept.
She came back to us quite quickly, this was a red flag for them, she was in the process of finding a bed and wanted us to get mum into the hospital as quickly as possible. On assessment they told us that both kidneys were basically failing, and she needed stents fitted as an emergency.
This surgery was cancelled twice and when she did have it, nobody could really tell us if the procedure had been successful or not.
The following day we insisted on speaking to a Dr and he told us that the procedure had been successful on one kidney but not on the other and therefore another procedure to fit external drains was required. However, he also informed us that during the procedure, they’d found a mass in mum’s pelvis, which had high tumour markers, and that she’d need to be referred to gynaecology. This totally wasn’t what we were expecting to hear, but as he’d showed us on the scan, we knew it was serious and hoped for it to be treated with some urgency.
Mum was discharged, complete with 2 external drains to her kidneys 3 days before Christmas. I live overseas, so at her insistence, I came home for a week to spend Christmas with my family whilst she and my dad stayed with my niece and their great grandchildren as they’d planned.
I got back to the UK on the 29th December and there’d been no news, despite her case having been discussed by the team on the previous Friday, I just couldn’t understand why there was no update or no appointment forthcoming.
Once passed New Year, I emailed the urology nurse and she advised that an appointment had been booked for the 15th January for an aspiration as they needed to remove some fluid from mums pelvis to confirm if it was cancerous.
We stated the mum was in a lot of pain so it would be a struggle to get to appointments, we’d had to buy a wheelchair because she was worried she’d not be able to walk the distance through the hospital, and we couldn’t continue with her suffering in this way and needed assistance with her pain management, to which she suggested that she get the palliative care team from the local involved in order to provide some extra support.
In the meantime, the DR was contacted who suggested some liquid morphine to assist with pain management which mum agreed to.
On 15th January We went for the aspiration. The Dr said that he was expecting there to be more fluid in mum’s tummy/abdomen but he was only able to take a small sample. This was concerning to us because we mums abdomen was by this point so swollen that she looked as if she was in the early stages of pregnancy. She was so slight and frail it was heartbreaking.
On 24th January 2024 the nurse from hospice visited to try and find out what the situation was and how they could help us. Went through everything that had happened, in detail, and advised her of all mum’s issues, bowel pain etc, but it was very difficult for her to advise on when we had no clear diagnosis. She suggested some other drugs that might be worth trying to help manage the pain and ease mums bowel troubles.
The following morning we were contacted by the Urology nurse who confirmed that the aspiration had confirmed it was cancer but in the gynae area, so we would now be transferred to their department and should be hearing from someone shortly. Whilst we’d waited all this time for a clear diagnosis knowing that it was something serious, the reality of it hit us like a ton of brick. How do we process that news as a family, but I can’t imagine how my mum must have felt. After the initial tears her first thought was for my dad and what he’d do if the worst happened.
The next day the gynae department called us and confirmed that it was gynae cancer and that the treatment they would offer would be chemo. Gave us a rough idea of how much chemo would be required. Mum asked about side effects etc and was advised that these could be harsh so in some instances chemo wouldn’t be appropriate as it could do more harm than good. Mum expressed that she wasn’t keen on chemo and was concerned about feeling worse than she already did. They explained that an appointment would be necessary to meet the consultant so it could be explained in full and assess if mum was fit enough, this appointment would likely be the following Friday. We asked what stage the cancer was, but all they could tell us was that the cells were high grade which meant rapid.
Two days later on the Sunday mum started to feel really unwell was sick in the afternoon, this continued through the following day when the new drugs suggested by the palliative nurse were available for collection.
The following morning we contacted her for guidance on how to use these new drugs along with everything else mum had. Explained to her about mum’s sickness and how it had now become a pale brown colour. She was very concerned about this and gave us a number at the hospital to call where they would do a phone assessment and establish what was needed.
We called the number and the gentlemen did a full and detailed of assessment of mum and said that they needed to see her and that we should bring an overnight bag in case she needed to be admitted.
As we were preparing to leave for the hospital, someone from the gynae department called to advise that we had an appointment on Friday 2nd February to discuss chemo. Advised that we were on our way to the hospital with a possibility that mum might be admitted.
We managed to make the journey by taxi and just got mum in the wheelchair when she was sick again. We arrived at the ward where they showed us straight to a bed that she literally collapsed out of the wheelchair onto. Dr came and took some details and said further tests and x-rays would be required to see if she needed admitting. Errrrr there is no way you are not admitting her when she’s in this state.
Dad and I had to go and wait in Costa for hours, and it was 8pm before they finally confirmed they’d admit her, although it wasn’t clear what they’d found. They also advised that due to Covid restrictions we shouldn’t be visiting and could only drop some bits off for mum – not good enough when we didn’t know what was going on!
The following day Dad and I arrived on the ward to “drop some things off” for mum and met a very nice nurse who said we could see her. The Dr also passed by as we were talking to the nurse, and she grabbed her and asked her to give us a full brief.
We went to mum with the Dr and at this point I can’t remember exactly what she said, but I don’t recall it being clear details. Someone came to do a scan or something so we left with the Dr and at this point I broke down and said it wasn’t good enough and we needed to know what was going on. She was sympathetic and took us too a side room where we explained everything and gave her the full picture of what had been going on. She quickly realised that we needed clarification and support on a lot of things and went to find the senior registrar.
She came back and took us to where mum had been moved to where we met the senior registrar. She explained that mum’s condition was serious as her bowel wasn’t working properly. Mum promptly threw up a bowl of black liquid which was like something from a horror film. She said that they needed to try and rest the bowel for a couple of days to see if they could get it working again, if they couldn’t we might have days. This was a total shock to all of us. They would need to give mum different drugs to assist with this, reduce the nausea and limit her intake of liquids and food etc to aid the bowel, but there was also an option to put a tube down her throat which would basically extract anything that went in, if mum could tolerate having it inserted. I then went to a side room with the registrar and Dr and had a further meltdown. I couldn’t understand how this had been going on for so long and whilst they had been discussing mum’s case every Friday since the 22nd December, nobody (other than the Dr that did the aspiration) had seen mum since then so they had absolutely no idea how she was doing or her visible state, that we saw in her every day, and now we were basically in a critical position!
We met the Consultant two days later on the Friday and other than resting the bowel, all she talked about was chemo and getting mum up and out of bed!
I can’t get my head round what these Dr’s were thinking. In front of them was an 80 year old beautiful woman who was very sick, very weak, on nil by mouth who’d clearly stated that she didn’t think chemo was something she could take, so how on earth they thought they’d get her back on her feet was beyond me. In mum’s own words, before she was admitted this last time, she felt that when she stood up her insides were going to fall out, which was clearly the mass in her abdomen taking its toll.
The following days were a blur and whilst we had to face the reality of the situation, we also wanted to try to get mum as comfortable as possible and she wasn’t in hospital. She couldn’t brush her teeth without help, she couldn’t get out of bed to use the commode because her legs had swollen to 3 times their normal size and she couldn’t lift the weight of them and she couldn’t pull herself up the bed when she kept slipping down because she didn’t have the strength.
We contacted the palliative nurse from the hospice as we needed help and guidance and she very kindly contacted the MacMillan team at the hospital and put us in touch with a lovely nurse (Marie), who agreed to be with us the next time the Consultant was due to see mum and helped us through everything. She talked to mum to find out exactly how she felt, how much she wanted to know about everything etc and she helped us voice all our questions and clearly understood where our confusion with all the mixed messages were coming from.
In fact I believe it was her who on Friday 9th Feb actually had a word with the consultant about being realistic of mums situation, because when she arrived that day, she suggested that as mum didn’t want chemo, but as her bowel seemed to be working, it would be better to move her to the hospice. The reality was, mum’s bowel wasn’t working, it was no different to when she was admitted to hospital, and when I actually asked the question, she didn’t really know it was as if she’d just assumed, and I thank god for Marie who asked if they could actually check to be sure! They said they would, but they didn’t.
Mum was moved to the hospice on the Tuesday morning and when we arrived in the afternoon, it was the first time in weeks that she actually looked comfortable, was smiling, and wanted to try a Pringle and a small piece of chocolate.
That was the last time mum was really mum, on the Wednesday and Thursday she slept mostly, on the Friday she was awake but really confused, couldn’t speak properly, thought she had to get out of bed as they needed it for someone else, and was generally unsettled. On this day as we said “Cheerio” (mum never wanted to say goodbye), the last thing she was smile and give a thumbs up.
On the Saturday she was asleep all the time and in the early hours of Sunday the hospice called to say her beathing had changed so we went immediately and she passed away later on Sunday morning.
My heart is totally shattered. Whilst I live overseas I’ve always been so close to my mum and I’m lost without her. Coming home after the funeral was when I think it hit me most, it’s as if I can be here and she’s still there in the UK, but obviously she’s not and I miss all our messages and calls like nothing else.
I feel like I spent 4 months in the UK watching mum die without realising what was actually happening. All the mixed messages and signs of hope when in front of our eyes she was deteriorating and it was like nobody cared, nobody was doing anything quickly enough and now that plays on my mind as guilt and if I did enough to get the care she needed.
I know the NHS are massively understaffed, but I can’t get my head round the situation of having a weekly meeting to discuss cases and then not having any contact with the patient to discuss the outcome or issues. I can’t understand them taking so long to find it was cancer. To this day they couldn’t tell where it actually was, and would only say the gynae area. None of it makes any sense to me, and now it never will because I’ll never get answers to these questions and even if I did, sadly it wouldn’t change anything now.
Our only comfort from this was that mum was in the hospice when she passed and we couldn’t have asked for a better place. The staff were so kind, caring for both mum and us and couldn’t do enough for us. At one point mum slipped down the bed and I asked if when they had a moment they could help us lift her back up. Within 2 mins, 3 nurses were there, they extended her bed lifted her back up and made her more comfortable, we couldn’t have asked for more.
I found this site whilst trying to track down an email address for our MacMillan nurse Marie so I could write to her to say thank you, and whilst reading some of the stories on here it’s made me realise that we aren’t alone, and many, many families have had the same awful experiences, it saddens me that so many people have, and so many others are struggling with the same feelings as me.
I’m not sure where I go from here, people keep telling me I need counselling, and my work have offered this to me (I was lucky, they were very flexible with my working hours whilst I was in the UK, and whilst getting up at 4:30am to work until lunchtime wasn’t ideal, it gave me the time in the afternoons to visit mum, or do things around the house to keep on top of it all), but I’m not sure if it’s the way to go.
My mum was very realistic, she said she was 80, she’d had a good life, lots of happy memories and that there were people far worse off than she was, and she said to me whilst lying in her hospital bed, not to be sad for too long, but to just get on with it – easier said than done eh.
She was also telling one of the nurses what she wanted for her funeral, and later we’d found 2 notes she’d left at home about what she wanted – “as early as possible, no hymns, 1 prayer, no going on about my life, thank everyone for coming and commit me to whatever.”
We did it was early as we could and kept it as simple as possible, I’d like to think we did her proud, I hope she thinks so too.
I’ll stop rambling now, thank you for giving me the chance to get this all off my chest. To everyone else out there that’s suffering in the same way, I’m so sorry for your loss and I really feel your pain, take it gently and be kind to yourselves. xx
Hey Fallingleaves,
I so appreciate you taking the time to read my story and respond. Read and hearing different experiences is heartbreaking, but it really does help.
I'm so sorry for the loss of your dad and your colleague, that's a lot to deal with in a short space of time.
Thanks for sharing what your other colleague said about cancer not always being easy to detect, that was something I definitely couldn't understand. When we asked where it was in the gynae area, they said it didn't really matter because the treatment is the same, but to me it does. I understand that certain cancers could be genetic, and ovarian I believe could be one of them.
I tried to get the Dr aside to ask, and she said if mum was in her 50's there might be a chance but she didn't think so now because of mum's age. However this was the same Dr that thought mum's bowels was working when it wasn't so it does fill me with confidence, especially as I'm in my mind 50's now. I think it's something I will need to get a second opinion on at some point.
I really admire you for going to the grief talk, that takes a lot of strength, but I feel the same, I want to feel better too and I think your inspiring me even more to get the help I probably need, so thank you for that.
I can also totally relate to the brain fog, I find it I'm not kept busy at work I have the attention span of a gnat and find myself drifting off, so I'm trying to take on a couple of extra projects to keep focussed.
Like you, I also try so hard to focus on happy memories and images of mum, Sundays are always bad days as it was the day she passed, 3 weeks after was Mother's Day, but I'm trying each week to focus less on the time it happened if I can and keep going.
Going through this journey is something I never imagined having to do, and mum would still be telling me that we should consider ourselves lucky for the time we had, and she is right about that. She used to tell Dad and I not to ask the Dr too many questions as they were too busy, and it was a struggle to explain to her why we had to and why it was important, just because she was 80, it didn't make her less deserving of their time and care.
This is a long journey for us both and I can't thank you enough for your support and for sharing your experiences as you go
, hopefully we can keep in touch as we progress.
Sending you big hugs and all the strength I can muster to help you through.xx
Px
