The cancer returns

So I haven’t posted for quite a long time now. But I have had a very eventful and eventually distressing couple of months which I will explain now. I am writing this from Queen Elizabeth hospital in Woolwich.

A couple of months ago I started getting pain in my right arm and shoulder and put this down to a recurrence of RSI due to all the blog-writing I had been doing. So I stopped the blog for awhile. The pain came and went but wasn’t too bad. I continued to do Pilates and keep fit and occasionally felt a strange pain in my abdominal area – but figured it was just the exercise and maybe I’d pulled something.

Then my little family and I went on a 17 day holiday to Spain, where we met up with my sister and 11-year old niece from Vancouver. The day after I arrived I started getting a little short of breath. It got gradually worse until I couldn’t lie on my back or right side as it felt like I was suffocating. I went to 2 Spanish doctors who said my lungs sound fine. By the end of the holiday I couldn’t walk more than a minute and had trouble climbing stairs. I somehow managed to get on the plane back home, which is pretty miraculous now that I know I had a collapsed lung and fluid on both lungs.

Anyway, the day after we returned I went to my GP who took basic stats and listened to my chest and sent me right up to A and E with a referral letter. One chest x-ray later showed the fluid on both lungs and they drained the right one immediately, bringing out 2 litres of fluid. I still didn’t think anything major was up – maybe pneumonia or pleurisy. They kept me in hospital and 2 days later my husband and I got the shock of our lives when the doctor said that my breast cancer had returned and was in my lungs, liver and spine. How could this be? Until the trip I was feeling absolutely fine. (I since learned that the pain in my shoulder is referred pain from my swollen liver or perhaps lung fluid pushing on the diaphragm).

So the plan was to start chemo immediately, but unfortunately 3 days later I ended up back in hospital with my lung filled with fluid again. So I have been here now for 8 days, 4 of which I had a drain inserted into my right side to drain the right lung fluid. The drain is now gone and I have a permanent drain in my left side. This should help me to breathe, at least. I had my first chemo on Friday and am still in hospital waiting for somebody to discuss a going-home plan with me. As I can’t get up stairs right now we may need to make some modifications to the house And I will probably need my own supply of oxygen.

And the heat! Seriously – I get lung cancer and breathing difficulties in the hottest weather since 1976? WTF? Could my luck get any worse?

Anyway, I am not one to give up easily so am now armed with CBD oil and all sorts of other supplements for the liver. I figure if I throw as much as it as I can then maybe something will work.

And diet – of course diet is soo important but let me tell you about hospital food. I have a gluten intolerance so they bring me gluten free meals (Wiltshire farm foods). They have 4 which they rotate. You’d think they’d be healthy right, being in the health care industry? Surely if they got people in the habit of eating healthy food then it would relieve some of the stress on the NHS. Or am I dreaming?

Yes, dreaming. I looked at the ingredients and the supposedly healthy meal is full of sugar, dextrose, rice flours, preservatives and all sorts of other crap. So I thought I’d have a yogurt. Can’t go wrong there. Well, apparently you can. The yogurts in the hospital are all full of sugar. Can’t find one without. Can’t get plain yogurt or Greek yogurt even.

And drinks. No cold drinks. Not even in this weather. The water is luke warm and even the Costa in the restaurant ran out of ice. The come around very few hours with hot drinks, but nothing cold.

Anyway, back to the gluten-free dilemma. Last time I was here, the day I was discharged a dietitian came around to see me and gave me a gluten-free menu. With proper food on it like soup and salads. So this time I knew and 5 days ago requested a dietitian. 6 days later and They finally appear. 6 days! What if I had a serious allergy? The problem seems to be that the hospital has a lot of good services but the departments don’t communicate properly and nobody knows about them. Anyway, they gave me a gluten-free menu to order from but every time the helpful nurses place an order they are told the food doesn’t exist. And I am sent another Wiltshire Farm Food meal. Makes me wonder if the dieticians even bother to see what goes on in the kitchen.

So, needless to say, I am not following my low-carb, high fat diet when I am in here and during chemo will probably have to give it a miss and start eating more liver-healthy food. Any recipes and suggestions would be welcome.

As for the care I have received – the doctors have been great but there are far too few of them. I can’t really fault them however. They acted very quickly in getting me the care and tests that I need. One in particular from the pleural unit was terrific. She visited me about 3 times a day. And actually seemed to care.

The nursing and care staff however have been another story. I have had some terrific nurses who are on their feet all day, checking on their patients constantly, showing concern and sympathy and can’t be faulted. Then there are some other nurses, mainly the night staff on Ward 1, that just don’t seem to give a rats ass about the people they are supposedly caring for. My first night in the night staff chatted outside my door all night long, yet told me there were unable to change a bandage on my cannula. I waited 2 hours and eventually had to have a row with one of them before she went to get somebody who could do it. It turned out that they thought I wanted the whole cannula replaced, despite me telling them over and over that I just needed a new bandage as mine was bloody and not very hygienic.

A few days ago one of the nurses fell asleep in a chair in our ward and snored loudly for an hour or two.

There were 2 very lovely old ladies on my previous ward who told me that one of the nurses told one of them to shut up and stop moaning and another was told to wait as she has other patients. Neither of the ladies are shrinking violets so told them where to go. I heard one nurse getting told off for swearing the other night. I have seen nurses come in and tell a patient that they will be right back with a commode or medication and then not come back for 2 hours. We all have to constantly chase every request that we make and everything that we need. But again, I will re-iterate. The majority of staff have been terrific and deserve medals for getting through their 12 hours and very draining shifts. A minority of them seem to be here only because they need to and don’t have any respect for the people that they are supposedly caring for. I know it is a hard job, but if you can’t do the job and still treat people well then you shouldn’t be doing it. You might not want to be here but you can be damn sure that we all want to be here a lot less than you. I can stand up for myself but a lot of patients here are too elderly or too ill to take matters into their own hands.

Now I am on the cancer ward the care has improved tremendously. All nurses are great and the facilities are much better. We even have a freezer for ice!

Anway, rant over. Without the NHS I probably wouldn’t be here right now so I’m still a fan of it as a whole, there’s just a lot of kinks that need ironing out.

So that’s my story. Obviously I have my moments, mainly when I think about my 3-year old son when I break down but then I pull myself together and try to save my energy for the fight I have on my hands. The hope is that the chemo will help with my lungs and stop the advance of the disease but it is not a cure. But whatever time they give me I plan to double, or triple and enjoy what I can.

X0x0

JustJen

Author: Jen

Jen Ainger is a 47 year old cancer babe, previous Pilates instructor and owner/manager of Eltham Pilates & Pilates 4 Scoliosis. Born and bred in Fredericton, New Brunswick in Eastern Canada she moved to the UK in 1993 (and now would like to tell you that she knows her “pants” from her “trousers”). She trained with Body Control Pilates in 2004 and opened the Little Pilates Studio in Greenwich soon after. The studio was sold in 2014 and she saw clients in her home studio until being diagnosed with terminal breast cancer in July 2018, a life-changing diagnosis that set her off on a whole new path in search of healing, a journey being recorded in her blog. Jen is currently living in Eltham, Southeast London with her husband, whippet and 4-year old son. (Jen is now trying to raise money to cover the escalating costs of supplementary treatment as mainstream medical treatment can only offer palliative care. You can help out by donating through her GoFundMe page by clicking on the link in the menu at the top right).

3 thoughts on “The cancer returns”

  1. Well done Jen. A positive attitude must go some way to help!!! Wishing you all the strength and stamina you need to cope with whatever lies ahead. I have a lovely friend Jackie Reed – an Eltham girl. Her husband was diagnosed with a brain tumour some moons ago. She wrote a book called ‘How to Eat a Rainbow Diet’. It’s on Amazon – I downloaded it in the hope I could share it or print it out for you but it won’t allow me to do that. Anyway here’s the link and I don’t know but it may be a bit helpful!! How to eat a Rainbow diet https://www.amazon.co.uk/dp/B00BXJCR3A/ref=cm_sw_r_cp_api_apBxBbE13FD24 In other news, Charlie wanted to bring you home a Peppa Pig cup cake on Friday and I told him it had too much sugar in it and you weren’t allowed to have it but I’ve promised him we’ll make a sugar free gluten free low carb treat for Mummy when I get back from holiday. Hope you’re feeling ok and can get home quickly x speak soon xxx

  2. Hey Jen. That sucks! Big hugs and boundless positive vibes from me! Wish i was nearer I’d bring your food in myself – although I’d need the help of the dietician (and probably a sous chef to get me going).

    The NHS does have its moments and they have been brilliant wih my family when needed but there is always room for improvement, specially in patient care from nurses and support staff on occasions. I’ve seen patients be extremely rude to staff too. When do we begin to think that being rude is acceptable? Probably when we need to take a break and it’s not always possible.

    I hope you are able to go home soon but remember you are in the best place at the moment – even if it does frustrate the heck out of you.

    Make sure you’re strong enough.

    Big hugs Jo

  3. Ah, yes… the problem of the caregivers who are unable to care for the people who happen to be patients… it’s the same here in Canada. The majority of hospital staff are lovely and doing the very best they can in a broken system. But those few who are just “checked out”
    to a point where they no longer see patients as people and treat people poorly. It’s bad enough when this behaviour shows up in workplaces like a shopping mall where people can come and go at will, but when it happens in a position where people are vulneranle and in need of help, it’s heartbreaking & damaging. YES, you and the feisty older ladies are able to self-advocate, thank goodness. Self-advocacy or patient advocacy by family or friends is very much an underexplored factor in receiving the best possible care, and I believe it actually affects our ability to heal and recover to our best possible condition. Dear Jen, I am so glad you maintain your feistiness, my friend – keep on keepin’ on, woman! ❤️❤️❤️

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