A Harsh 2 Weeks and the Role of a Carer….

I bring this blog, part of it written a few weeks ago but very significant for the last 15 or so days. Complete harsh and rough few weeks have been had with added mental torture bringing stress and anxiety. We seem to have turned it around slightly, well I think that every morning. The mornings start off well and I can decline over the course of the day.

After major symptoms last week, I was seen by a doctor and sent home with a massive stash of meds to control my pain. This included liquid morphine, liquid paracetamol, high dose steroids and more sleeping tablets, amongst my regular meds. Liquid meds as food and drink weren’t going down well.

The contents of my bedside drawer!!

I am now on herceptin which is working to break down cancer cells. This may lead to uric acid build up in the body causing gout so further meds to break that down.

With me scared completely out of my wits and being told all this, unable to eat or drink to flush anything out, complete lack of energy, a belly the size of a watermelon and chronic pain….. things were just getting worse. I am also losing weight.

I was asked if I would like the hospice team to be called in to manage where I was and just get me through whatever this was. I instantly agreed as this didn’t seem to be something I could manage by myself. I am no longer scared of the word hospice and know what help I can get there when I need it.

Anyway….. me being me wasn’t going to give up without a fight. I prayed lots, slept lots and rested for a few days. As soon as I was able, I started back on my biomat and epsom salt detox baths to flush out all the meds that I needed to take.

On Saturday, a dear friend took my kids for the entire day so I went to a reflexology and reiki session, did a biomat session, detox bath and slowly turned things around. On Sunday we went to the Gurdwara and prayed.

Today for the first time since beginning of September, I have woken up with the kids in the morning and managed to see them before they headed to school. Suraj noted this significantly as I was up and about. He needs to see well mum as well as poorly mum for him not to be in constant worry. I have had 2 glasses of water already before 8am….. this is significant progress for me.

I am off any pain meds and the hospice team have not been required at this point. The meds carry a lot of sugar also, something I am trying not to feed my cancer with. You have to monitor everything that passes the lips.

This brings me onto the topic of this blog, as if all above wasn’t topic enough!! Its harsh but I bring it to you like it is …..

Some time ago, a very significant member of my medical team from my previous cancer looked me straight in the eye and said straight up….., “You have a good partner here, the majority of them do not stick around, you are one of the lucky ones!”

It was not a flippant comment, it was true fact said with so much meaning. I was shocked at the sheer transparency of it. That comment, never ever left me. I know so many cases within my two cancer groups where the partner has just jumped ship. It just got too hard. As harsh as it seems, there was a better life somewhere else to be had. Abandoning a cancer patient…. it happens. It is reality.

Cancer is hard….. it changes life for ever. The patient at times, looses themselves in treatment, for weeks, for months on end. The role of husband and wife becomes one of duty. There is a disconnect. Life just doesn’t carry on as normal, no matter how much you try.

Gurveer has gone above and beyond and soared over the line of duty. At times, I have wondered how he managed, if roles were reversed, would I have managed to do the same and stay as sane as he has? Gurveer has been the pillar that has kept us altogether. As a family and as a couple, I don’t think we have fallen apart and I do wonder how we havent. I know just how easy it is to fall into that hole.

Our recent holiday has really highlighted his role as a carer. I really wanted to get away. I tried my best to get myself organised but there is no planning at this stage. The day before we flew, I just slept and rested. I was physically unable to manage much. You know all that last minute organising, cleaning up, packing the kids stuff, cleaning out the fridge. I did nothing. It all just happened around me.

I felt guilty but I couldn’t do much to help. I’d just have run out of steam a lot sooner. My role as a mum….. well I try but my 3 boys are rallying around and doing my jobs too wherever they can. I didn’t carry a single bag, I only packed my own stuff.

The last day of hols was also a washout. My 3 soldiers packed us all up! Well mostly Gurv, followed by mighty muscles Suraj followed by a lazier Amar but given that he is just 11…. he really does pull his weight.

All the memories being made at the moment….. the fun, the smiles, the pictures….. its all because of Gurveer. He is literally carrying me through life at the moment, going along with my plans, driving me from place to place, be it a hospital appointment or a hair appointment, I don’t struggle much more than I need to myself!!

To that I owe the world. I am one of the lucky ones in one of the most unluckiest of situations but couldn’t be more grateful. I know Gurv has me covered. I know he has the boys covered and outside of that we have our close support network.

Some days are easier than others, some weeks fly by and some pound down on our brains so much that we just hold on and wait for them to pass. From the outside, it looks doable but if I am honest, it is just about doable!

I always just bypassed the word carer….. just didn’t give it much thought. I now know that role too well. It is a vital part of the healing process. It has made my life so much easier, I just can’t put it into words. I am this strong because I lean on Gurveer and the strength he carries for us both. Cancer hits the entire family, never just the patient and you carry the burden together.

Last year when we did the campaign for Breast cancer now, we met another dear couple, Sam and Jason. What we didn’t understand fully then was that specific role that Jason was playing. Jason became a good friend to both of us and I’d say guided us through the first few months of chaos, just checking in with us, letting us know that they have been there, living that life….. we were ever so grateful for the support we had and that friendship evolving when it did.

Folk often forget about the carer but in our story, there are a few strong uns who keep checking in with Gurveer. I know they have him covered. It all just fits together and that is how you get through your days.

I have definately given him a few grey hairs and a fair share of worry but hey we have had and are still having our fair share of fun along the way!

It is really what you make of it!!! You can crumble or you can smack cancer in the face and live life twice as hard each and every day possible.

I’m fine, because I have a mighty strength carrying me along. I’m fine because he has me covered x