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Time for a little break.

Cabin

 

Thanks to the wonderful charity Momentum we were able to take a well IMG_7139earned family break in the New Forest at the end of May. We got to stay in Momentums beautiful cabin in a country park near Milford on Sea and had a fantastic week relaxing, making memories and relaxing some more. We took Eleanor to the beach a couple of times, and thanks to a friend, out on a boat for a day trip to the Isle of Wight.

Keeping a 4 year old child entertained can be a difficult at the best of times but when that child cannot see it makes things so much harder. It was heartbreaking knowing she couldn’t see the beautiful blue sky and the huge sandy beaches. There were some little bunnies that scurried around near our cabin and I would have given anything for Eleanor to have seen her favourite animal hopping around right near her. We did our best to describe everything we could, so she didn’t miss out on too much. We are so fortunate that she has memories of lots of things and seeing the smile on her face when you explain something she remembers makes everything worthwhile.

The week went way too fast and we are hoping we might get to go back again at some point this year!

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Scanxiety…

Thankfully the week following Eleanor’s cancelled MRI scan flew by and before we knew it, it was groundhog day and we were running through our pre general anaesthetic checklist and filling Eleanor with as much food as possible before she became nil by mouth in preparation for the rescheduled MRI.

Prior to the MRI scan we had a meeting with Eleanor’s Oncologist, we hadn’t seen him since February so it was nice to chat with him again and see how happy he is with her progress. She appears to be coping exceptionally well with the chemotherapy and is in very good health considering the toxic chemicals they are pumping into her tiny body.

I have to credit Tim here; having fought his own battle with cancer 10 years ago, he knows so much about keeping healthy when on chemotherapy. Tim is on top of everything and without him Eleanor would probably not be doing as well as she is. I am learning as fast as I can but I can honestly say that without Tim we would not be where we are now. If you are interested in reading about Tim’s experience, here is a link to the diary he wrote shortly after he was diagnosed in 2004 – timstollery.com – just make sure you have some tissues close by!

We talked about the impending MRI scan and Eleanor’s Oncologist told us that he understood how anxious a time this is for us and that he would call us the next day with the results of the scan so we didn’t have to wait too long and worry ourselves.

Tim and I had discussed how we would ideally want the results given to us. I was really against getting such important news over the phone and would have preferred to wait for another appointment with the Oncologist, than take a call which might not be good news.

Tim was happy to leave this decision solely up to me and I reluctantly agreed, providing the call would be from the Oncologist himself.

This also meant we wouldn’t have to wait too long to hear the results or wait for another appointment with the Oncologist. My reasoning behind only wanting to hear from the Oncologist himself was that if I had any immediate burning questions during the call, I would be talking to the best person to answer them.

After our meeting we headed back to the day ward. We chatted with the ward doctor, nurses and anaesthetist, signed some paperwork and spent some time racing Eleanor around the ward in a little car. Tim and I had secret eating shifts where we got to hide from Eleanor and stuff sandwiches in our mouths. We felt that it was unfair eating in front of her, despite her visual impairment her sense of smell is impeccable and especially as she kept asking how long it would be before she could eat something again!

We were just in the middle of putting her new Beads of Courage on the string when the nurse came into the room to tell us they were ready for us to take Eleanor down for her MRI. We grabbed everything we needed and carried a very frightened little girl through the hospital to another waiting room. Here we had a quick chat with the radiographer and ran through some general questions regarding Eleanor’s health and then we were ushered through to the room where she would be given the anaesthetic. By now Eleanor was very upset, she was crying and clinging to me saying she wasn’t ready yet and asking me to not let them do anything. We sat on a chair and she cuddled into me sobbing while the anaesthetist asked some more questions. Fortunately her port was already accessed so they just attached a syringe with the anaesthetic to the end of it and within 3 seconds she went limp and the doctors lifted her off me and on to a bed.

I turned one last time as we left the room and I heard those familiar words “don’t worry, we will take good care of her”. Tim and I headed back down to the day ward together holding hands with our hearts in our mouths, Tim was doing his best to hold back the tears and although we knew there would be no immediate news, there is always that tiny niggling worry somewhere inside which runs through every worst case scenario in fast forward.

After what seemed like forever, we saw Eleanor being wheeled back into the day ward and we got to have a cuddle while she slowly woke up. It didn’t take long and within an hour she was wide awake and stuffing her face full of snacks, after an hour had passed and she showed that she was well enough, we were allowed to head off home. Now it was just that agonising wait for the all important call with the results the next day.

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The next day I had to work but Tim promised me he would call me as soon as he heard anything so I spent the entire day watching my phone, trying hard to concentrate on my work. The anxiety was overwhelming, like nothing I have ever felt. I had a physical pain in my chest all day and each time my phone lit up I thought I was going to be sick.

Surprisingly, we didn’t get a call that day!

They say no news is good news, at least this is what you you try and tell yourself when you are waiting on news like this. Convincing yourself that everything is fine whilst your mind is in overdrive.

The next morning came and went. Shortly before midday Tim emailed Eleanor’s Oncologist and specialist nurses asking if someone could call us with the results. The waiting had become too much, we had a bank holiday weekend ahead of us and we knew there wouldn’t be anyone calling us until at least Tuesday.

Finally, a few hours later we received a call from one the specialist nurses. This was not what I wanted, we were promised we would get a telephone call from Eleanor’s Oncologist by him the day before. I was really disappointed, but by now I was so desperate I just wanted to know everything was okay.

The nurse told us that Eleanor’s tumour has not shrunk with the chemotherapy she has been given so far. This news made my heart sink immediately. She then said that despite this, the tumour has not grown, has remained stable and that we should be very happy with this positive news. I passed the phone to Tim and paced the living room floor crying a mixture of a relief and disappointment. The anxiety and pain in my chest was gone but had been replaced with a heartache of a different kind. I know the nurse said we should be happy the tumour hasn’t grown. It is good news, but I wanted better news, I was hoping for better news.

It took a while for the news to sink in. To be fair we are really only part way in to a very long chemotherapy journey and perhaps we cannot expect things to change that quickly. We have been told that this type of tumour can be stubborn to treat so it may take some time before we see any change.

We will carry on, we will remain positive and hopeful on this roller coaster of ups and downs, but most of all, we will do everything in our power to ensure our daughter keeps her fighting spirit!

 

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