minerva's blog

The Waiting Game

2009-11-27T13:11:08Z

In april this year my partner Bob was given the all clear from Lung Cancer and everything was "rosy" again. Now, he has lumps in his neck which came up in the last 5 weeks, he has had the CT scan and now the waiting begins.

We waited before when he first had the whole problem but now the waiting is more horrendous as we had the all clear once and now it seems we are waiting to hear if its all gone pear shaped once more....

We have had a chuckle tho amongst all this because before the CT scan we went to the hospital A&E to have the neck lumps looked at because they were so painful and Bob had all sorts of tests which came back showing normal, blood, xray of lungs, spine, blood pressure, heart so we were pleased with that, but for the pain they gave him pain relief tablets which made him violently sick so sick he cracked a rib in the process of hurling...so back to the hospital to get that checked and they gave him a leaflet which told us about all the things that can go wrong with a chest injury!

Life hey! what can you do but go along with all it chucks at you...

Hey ho, there I was lying awake at night worrying myself about the lumps in my beloved's neck and what they were, worrying about the results of the scan, waiting for the letter or phone call and now I'm adding worrying about the chest infection he could get or fluid on the lungs as well as the results of the scan - I'm like a little hampster running around in its wheel...

Yet today, the sun is shining with some blue sky up there and my babey is brighter today than at the beginning of the week and who knows what the weekend will bring.....

Wishing you all a smile amongst it all and fingers crossed for all of us waiting for results.

Hillingdon & Hayes Chat & Share

2009-11-06T12:52:15Z

Hello all - I did start a group called Hillingdon & Hayes Chat & Share a while ago and notice I got some members - I just wanted to say thanks for joining but I was a bit "tied" up with my own health getting myself back on track after Bob's treatment and didnt do much with the group for which I am very sorry. If there are any out there who want to join me and have a chat about our problems, carers and cancer suffers together then I will be monitoring my group alot better now since (touch wood) I'm alot better. Take care all ...

Carers private time

2009-11-05T12:17:23Z

I wanted to respond to every one who wrote to me after my blog with my thanks to them all - in particular the lady called Sally who said "I feel like I've lost him already" and wow did that hit home - that's how I felt every day that he was already gone, already shrivelling away infront of me especially after the radiotherapy which was agony for him. My Counsellors said to me something that put it all in perspective "you are grieving while he is still with you" and that made me think about it all and that he was still with me and for that I should bless the day. I found it so hard to get my head around the fact that he was so sick he could die and it took a long time for me to come to terms with that. Another thing which the Counsellor asked me was "what do you do in your private time, time alone" I was confused - I didnt have any! "how do you relax" she said - again confusion because all my time was being used up - all my emotions were being spent and she was asking about spare time! It was all such a rollercoaster - the whole cancer thing is so devasting - nothing ever prepares you for it - nothing ever will. But amongst it all "private time" is essential - 15 minutes with a newspaper, a long bath, a walk around the block is even a good break. Anything we can grasp as we need to refresh ourselves and sometimes just step back from it all... Thanks again for all your comments and chat its lovely to hear from you all.

When the Rock crumbles (by a carer)

2009-11-03T12:23:35Z

I am writing this Blog page to all of you out there caring for a loved one to pass on my message about how important it is to take care of yourself. Amongst all the things that go on in that process of care, we tend to forget ourselves. I know I did…

My partner Robert diagnosed with lung cancer Summer 2008 and our worlds were blown apart.

There were hospital appointments, websites, books, leaflets, brochures to read, medication/treatments to understand and in the centre of all this was the heart breaking worry about the man I loved coupled with still having to go to work, do shopping, pay bills and all the other normal stuff that still goes on.

After his treatment of Radical Radiotherapy and he was back at home another nightmare began – the pain he was in, getting him to eat, watching him loose weight, me not sleeping because I lay awake listening to his breathing wondering "was he ok". And still having to get up early, work, do the shopping, pay the bills, and prepare his special diet, read a small mountain about what food he could eat, should eat, not eat! I remember many times only having 3 hours sleep and then having to get up for work to start it all again.

I bet there are many out there who identify with this and its you I want to say – “take care of yourself”.

I wish I had done so sooner because during the “waiting” period for his results I finally broke.

Everyone I worked with said I was unbearable, snappy and tearful – yet I do not remember being that bad! I thought I was normal and coping well.

During the waiting period, (which was 3 months until we knew if the Radical Radiotherapy had worked) I could not bear the waiting any longer and went to my GP for something to help me sleep.

He checked me over took my blood pressure which was high; and I cried like a baby, broke down in tears. He recommended Counselling and quick.

I was prescribed blood pressure tablets and a mild sedative and after speaking to our Macmillan nurse Lucy the Counselling process commenced.

Within about 3 weeks I began Counselling and started to feel human again – it was like a cork released and many times I just sat there cried my eyes out and my god did it feel good.

If you need help talk to Macmillan, they know the ropes, they will help in any way they can. The Counsellors at Hillingdon Hospital were fantastic and after the first meeting, I truly felt relieved like a weight had been lifted. I stood at the bus stop after my first session and felt “lighter”.

I wish I could convey that feeling to you in words but do not think I will be able to. This website is a fantastic place and I got lots and lots of support and sympathy here but simply talking it all over in one session face to face had such an amazing effect on my emotions and outlook.

Do not be worried about any stigma or people laughing because you are seeing a “Counsellor” that’s their problem, don’t worry what others will think – ask for Counselling if you feel the need for it – it’s there and I wish I had gone sooner.

At home, with family, with Bob and others at work I felt like I had to be strong and not really show any fear, any weakness, any tears – most of all I didn’t want Bob to see how his illness was hurting me. He had enough to contend with without having to deal with my frailties.

If you are going through the caring process, please do not be afraid to ask for Counselling or help for your own health, in fact demand it – you are that person’s rock and without you they would be left to handle their illness alone or without the person they love.

Today, several months later I have been diagnosed with Diabetes II, which is very common I’m told, many millions of people do not know they have it and just live with it until something happens or it shows in a blood test (like mine did).

Some doctors believe that stress can contribute towards developing diabetes and I know deep down that the past year with Bob was the most stressful in my entire life.

Of course, I am not apportioning blame to anything I just wish in the midst of all that cancer stuff when it was at the height of its treatment and pain factor that I had taken a few moments to get something to help me cope. I wish I had squeezed in a doctors appointment for me before I reached the crying phase.

I wish I had those mild sedatives to help me sleep.

I wish I had noticed how snappy I was with Bob and everyone else at work and family.

And most of all I wish for all of you carers out there to avoid the “breaking point” I reached and say “I need help too”. Being strong and being the rock is no good if the rock slowly cracks…

Painful Eating After Radical Radiotherapy

2009-01-13T08:09:00Z

Hello, my name is Helen and I am fiance to Bob who has Lung Cancer and has just come through the side effects of radical radiotherapy. During that time eating was absolute agony for him and in his words "like swallowing razor blades". I am going to post on here all the tips, information and recipes I found out to help him eat 2200 calories a day when on some days he couldnt even swallow his own spit. Am off to work now but will be back with some helpful ideas on how to boost the calories with minimal food. Take care everyone best wishes to all.