Tough Time at home

Firstly sorry for the long time between posts it has been a tough time at home over the last few weeks.


Steve finished his 3rd course of Sutent last week but even though we thought being back on Sutent would mean that his cancer pain would go away it did not and Steve struggled through with the side effects of sore feet and struggling to eat, due to everything tasting awful and on top of that the cancer pain in Steve’s side and total exhaustion, we were counting down the days for the Sutent to stop!

Steve was and is his amazing self with all of this and kept on going, focussing where he could on other things and when he was well enough has been out in the garden, which is now looking so beautiful! But other times struggling to get out of bed and to deal with the pain.

As much as we have been so looking forward to Sutent stopping and the 2 week break the pain has really started to take its toll on Steve. He is now having to take many different pills and luckily we have a great pill box so myself and the girls can sort it out each week into the little compartments!

Over the last week, Steve has had a new complication! He has had the most terrible pain in his stomach and chest, which would come on morning and evening. We were able to control the pain with liquid morphine but each time it took more and more.

Sunday morning, the pain reached a whole new level and Steve struggled to breath. His breathing became more and more shallow, with each breath came more pain and it was more and more difficult to manage, the normal amount and some more of morphine did not help.

At 10:30am I had to call an Ambulance, it was the most frightening thing I’ve ever seen and had to do in my life. Steve was laying on the sofa struggling to breathe, whilst holding his heart, getting more and more pale. Luckily Steve’s parents were here so they could help whilst we waited for the Ambulance, with Steve’s Dad outside desperately looking for them and Steve’s mum holding Steve’s hand whilst I rushed to get myself dressed and all Steve’s medicines together. Oh and Megan who had to sort out putting the dog away, as Ambulance crews wont come into your house unless all animals are shut away.

It seemed like forever for them to arrive but I know now that it was only about 5 minutes but in that time Steve’s breathing really became difficult and everyone was trying their best to be strong but faced with a situation that you know nothing about and your loved one in so much pain made the whole of time seem to stop.

Steve was taking to St Peters hospital by Ambulance, with his Dad and myself, Louise and Muriel (Steve’s Mum) following behind in my car.

I realised at this point I had simply not thought through what I would do in this situation I was totally unprepared and above all I was so scared.

As awful as it was for me and Steve’s parents and Meg I cant imagine what the feeling must be like when you simply cant get a breath. Steve was so strong and calmed down once the ambulance crew arrived. I went into auto pilot telling them exactly what Steve’s history was and explaining how he had blood clots previously. To the point the ambulance crew thought I was a nurse! Not a nurse of course just someone who has been with Steve through every step, knowing when he is in pain, even when he is trying to hide it from the rest of the world. Knowing the large array of drugs and operations he has had and above all trying to help and support my best friend and someone who I love so very much.

Once at the hospital Steve was assessed by an extremely laid back young Jamaican doctor. They did rule out any problems with his heart and sent him for an x-ray and CT scan of his chest. Both showed that he didn’t have an blood clots. Which was a huge relief but they did of course show Steve’s cancer but this of course we knew about. Steve’s x-ray did show however he has serve constipation, with a build up all the way through his large bowl up to his diaphragm

This they think is definitely the problem with the stomach pain and possibly causing the breathing issues.

The trouble is that Steve has to take so many tablets for his cancer pain that this has a side effects of constipation. Constipation to most is an inconvenience and slight pain but when it reaches the level as it has in Steve it is a serve pain and terribly hard to manage.

They have given Steve some more medicine! Another one to add to the list, which apparently will help. However it tastes awful! And I can say that as Steve made us all taste it!

We left the hospital late in the evening with Steve still in his dressing gown and no shoes! I must remember to take some shoes for him if this ever happens again.

Since we have been home we have had the district nurses around and they have been trying to help us and we saw the doctor at the hospice yesterday that is also going to help us. What I didn’t realise was that there is a whole network of people who can help, you just need to know where to look and to most importantly not be afraid to ask for help.

I will post more regularly as I know people are keen to know how Steve is. It just sometimes with everything going on its hard to find any time in the day, to get just the basic things done. I’ve got to the point now where I need more help. Steve isn’t really able to be left all day, not that he needs help with personal things, its just simple things like making sure he has take his medicine and that he isn’t struggling too much with the pain. I cant be here every day as I have to work but equally it is very hard to leave the house knowing that Steve is in a bad way.

Oh and its about 2 and half weeks away till I do the bike ride to Paris! I cant believe it! I am now starting to panic about that! But more of that another day! But if you can sponsor me and haven’t done so yet, then please use the link at the top of this page