After care

General thoughts

As many of you will know social care is a problem in the U.K. Along side this you have (I would guess – but no good stats to prove) a fair few family members in the general population who feel they have an obligation to act as carers to their loved ones and often go under the radar. My Mum for example looked after my very elderly Grandma in her own home for two years before she passed away with limited help. She also looks after my elderly Dad who has battled severe clinical depression on and off for six years with limited help. Coupled with this my family are not well-off but we’re far from poor. So I can’t possibly begin to imagine how it would feel to be immobile, lonely, unsupported, hungry, skint, in pain AND be a parent where you are dependent on your children. This is too often the scenario as people are discharged from hospital and left to their own devices feeling unsupported. I know there is much more that can be done.

Why am I telling you this? Because I am one of the lucky ones. I’ve heard some harrowing accounts from young ladies with BRCA1/2 coming out of surgery and then chemo and Grandparents desperately trying to look after their children, grandchildren, two households and hold down a full time job without support! So I don’t mean to brag but respectfully tell my account whilst seething about the lack of support currently available for those whose situation is vastly different.

My carer (AKA Mum)

My Mum is a force to be reckoned with. We’re similar in some ways and very very different in others. An ex-teacher, a methodical organiser and often militant in style. She is as equally stubborn as me and impeccably clean – which I’m definitely not! I’m not sure how my often laid back, larking around style will go down but we’ll see. I was just so happy she took me in.

We all agreed it would be a good idea to stay at my Mum’s (in Oldham) for two weeks until I had my drains out to avoid the kids pulling on them and jumping on me while I was still very sore from surgery. I’d also been advised not to lift anything. You don’t realise how much you use your chest muscles, even yawning hurt at first! Again I was so lucky this was an option and I never take my Mum’s generosity for granted.

“First thing’s first”

• Medicine log. “We need a list of everything you’re taking and when”. 
  
• Drainage chart. “Show me how to empty them love”. All four drains needed emptying and contents measured every morning and night. They have a vacuum like mechanism and are used to remove excess fluid. They actually look like they’re coming out of my stomach but they go up and coil around my boobs. They’re also stitched in place.
• Sleeping. My mum’s friend, Maureen, lent me a great pillow which allowed me to sleep upright in comfort. There were a few mornings where I couldn’t get out of bed. I’d slipped down and whenever I tried to roll out my sides hurt. I managed it though, slowly taking deep breathes.
• Eating. I’ve never had problems eating so I’m ok on this front. I just can’t do much cooking myself as I can’t lift my pans or fill up the kettle
• Lifting. I am 13 days pre op now and just managing to lift a cup of tea. I can’t lift anything higher than shoulder height and I’m not good at pulling and pushing. Doors are a problem (I got stuck in the loo at Jimmy’s!) and seat belts are a nightmare though I’m adapting. I certainly can’t put my DVT tights on by myself as they’re so tight. I have no idea how someone could put these on by themselves post op.
• Washing. I wasn’t allowed to get my dressings wet. They were only splash proof so I had my showers from the bottom down holding my drains up as best I can while my Mum hosed me down. Because I couldn’t put a bobble in my own hair it entertained my Mum no end creating pineapples on top of my head! My hair was washed over the bath.

  

Outpatient appointment

I had an appointment a week after my op to have my dressings changed, to discuss my drains and to go through any other concerns. My dressings didn’t need changing and other than a strange blister that had emerged under one of my dressings post surgery, I had no concerns.

Whilst waiting, there were two ladies (Sandra and Pam) offering free tea and biscuits to the people in outpatients. My Mum got chatting (as she often does) and the lady suddenly pointed at me and said “I made those dolly bags”. Well that was it. They told me all about their charity Breast Cancer Research Action Group who have done some amazing work for the hospital. This included raising money for a new tomosynthesis 3D imaging mammogram machine, which was the one used on me! They also fund a research laboratory at St James’ Hospital. They have a group of ladies who make the Dolly Bags which hold the drains post surgery. Prior to this they only had plastic bags! Their work was quite humbling and they were happy to see their dolly bags being used in real life.

  

Mini reunion

After my outpatient appointment I went home for the first time in a week and was reunited for a short time with Will, Archie and Elsie. Archie thinks I’ve been in hospital all this time and that Mr Turton had allowed me out on a special visit. He’s incredibly strong and loves wrestling so Will had to prep him for a few days beforehand so he wasn’t jumping on me etc. Difficult given he’d be so excited.

I’d also been very nervous about seeing Elsie. I’d tried five Skype calls with Elsie and she just didn’t react or look like she even recognised me. It was really upsetting. Anyway as soon as she saw me she scurried up to me with a beaming smile, arms open wanting to be picked up. I obviously couldn’t pick her up but Mum lifted her up and put her on my knee. She gave me the biggest cuddle and kept looking up at me. She was also very still which she just isn’t at the moment as she’s into everything and crawling everywhere. 

I of course was in bits. She HADN’T forgotten me.

Leaving

It’s now nearly two weeks since my op and I’m now going home. I have my first appointment with Mr Turton (my consultant) back in Leeds today to hopefully have my drains taken out and to discuss next steps. My pathology results from my surgery may/may not be ready today but we’ll see.All in good time. 

I don’t know anything about the cancer removed from my boob. The pathology guys analyse the tissue to ascertain: the type of cancer; how quickly it grows; the size and whether it has spread to my lymph nodes. From this they will determine the medicine and treatment required. I will almost definitely need chemo – and why would I not want it to make sure everything has a good spring clean?

My story is far from over and this is by no means the end of my blog, but I’d like to say a huge thank you so far to all those who have helped in the period since my surgery. With special mention to my Mum and Dad, Our Cath (who has been living with Will and the Kids. She has helped with the school run, cooked, cleaned and helped with the night feeds!!! 😘❤️😇), siblings: John, Liv, Maz, David, Clare, Rich, Hannah and SG, in laws Jenny and Martin. To all  those who have Skyped, called, visited, sent gifts, brought us food your support has been overwhelming ❤️❤️❤️❤️❤️❤️

And now for the next chapter …

Liz Spice, 4th July 2017