Harry has been on increased anti sickness drugs and by lowering his patch again we have managed to get on top of his sickness.
I have been a driving force behind decreasing the fentanyl patches, feeling confident that when Harry experiences pain again we will increase the rate. It seems pointless giving him radiotherapy then not decreasing them, to see if he can have a little respite from being medicated so much and experiencing all the side effects that go with that.
So we set off at 6.40 am on Saturday 3rd aug and having just one stop arrive at 1.45 pm. We get our keys at 2 pm and after unpacking head to the beach which is 10 mins walk away. Perfect! The boys love the beach so much and we discover that the sea is warm enough to paddle comfortable in!
We spend Sunday pottering around and visiting places along the coast. I also realised upon getting up that I had forgotten Harry's fentanyl patches, due to be changed later in the day. I had remembered all the bottled medication, the emergency medication, but sadly not the patches! I was so cross with myself as i had organised repeat prescriptions for everything earlier in the week! I contacted the on call McMillan nurse in leeds and he contacted Southampton hospital whom have been given our details! It all turns out ok and we even get the patches delivered to our holiday home by the ward manager on her way home from shift, whom lives nearby. The nurse whom dropped the patches off just so happened to be the sister of the ward manager at Lgi ward 31, also the oncology ward! We felt blessed to have such a seamless service and it is nurses that go out of their way that make the NHS what it is. Without these nurses going the extra mile the NHS would be more on their knees than they are and it is the dedication of these nurses that try and continue to provide such a high level of service despite all the recent cuts in funding. The only error was that bad communication meant we only had been given the 25 mg patches and not the 12 mg patches as well, as Harry was on a total of 37 mg. We had thought about decreasing his patch rate again, but in the end we had to! However, the next eve the same nurse dropped off the extra patches so we had them on hand, just in case.
We've had an amazingly busy, but lovely week!
The boys have enjoyed racing each other on their bikes on the promenade, we dodged torrential rain at the national car museum on monday, with rains breaking enough for us to have a Go - Kart race!
Then since Tuesday we have had glorious weather.
We went to the Isle of Wight on Tuesday. Beautiful blue skies made us feel like we were abroad. The boys were very excited about the ferry crossing. Then on arrival at the island we went straight to the needles park. We went on a cable car down to the beach, where you can view the coloured sand cliffs. We decided to take a short boat trip to get a closer view of The Needles. The boys decided they were pirates and loved it. I got some great photos too.
We then went back to the park and whilst daddy and Harry queued for water zorbing, Callum and I headed for the coloured sand shop and filled some glass shapes with sand. Funny though that as a childhood memory of doing this, I don't remember the everlasting queuing!
We return to the sunshine just in time to see daddy and Harry do the water zorbing and capture the event on camera! Daddy was about the only adult to do it! Probably because the small pool would have been empty of water! Trying to capture a good picture, Callum and I stood close to the pool, where daddy and Harry were trying to manoeuvre these giant bubbles, but we ended up drenched by a wave of water that daddy produced! Such fun! Afterwards Harry too filled some glass shapes with sand and mummy was left queuing again to get the shapes sealed whilst daddy took the boys on some rides!
We managed to get to Blackgang Chine theme park for the afternoon too! The pirate play park was very much enjoyed by the boys with water filled cannons to spray each other with!
We also managed a short drive on the island. We had a brief look at Ventnor. A beautiful place, with cafes along the seafront. It felt like being abroad and having spent 15 mins there, I would definitely like to go back for longer. We finally got on our ferry at 7.30 pm with the sun still shining! A fantastic day had by all!
Wednesday was a quiter day. Harry was desperate to go to a small aeroplane museum, so daddy took him there in the morning, whilst I had a lovely morning with Callum on the beach. In the afternoon we trialled the outdoor pool on the site, which was heated. With the beautiful sunshine I really felt abroad! Callum loved it, but Harry found it hard and was soon cold. We head indoors, but Harry wasn't up to swimming. Even when we ventured into the splash baby pool, which was as warm as a bath, after initial excitement Harry just sat on my lap and nearly fell asleep. It is at these times that we are reminded that Harry has cancer. The comparison between the lively Callum splashing about and his elder brother lifeless, indicates the presence of the disease. Once Harry was back and dried in our lodge he fell asleep for a while.
Fortunately he awoke on Thursday well enough to visit Marwell Zoo! Yippee. We met friends their, The Kaye family. We haven't seen them in a few years as they moved to Southampton for work and well lives get busy! Their 2, Sam and Lucy really got on with our boys, which really makes for a great day out as they happily played, whilst us grown ups could have a catch up.
Harry wasn't quite himself, but had a great day and huge stamina to still be going strong at 7 pm as we went to a pub for tea after and the children found a great overgrown area that was their 'den'. Dens will never go out of fashion and make the imagination come alive. Harry said this den was a Lancaster bomber! Still mad on planes and still into airfix models. He has started a red arrow model whilst on holiday!
Callum loves animals and loved the zoo, particularly the monkeys, whom were always my favourite too!
So we come to Friday, our last day. We were debating whether to go to Poulton park or not, the home to peppa pig world! Callum had continuously seen signs for it and had seen an advert for the park on YouTube some time ago! He knew Peppa pig world was nearby! Harry awoke though with some pain in his spine. I gave him some oral break through pain relief and we had
a quiet morning. Harry seemed to perk up towards lunchtime, so we made the decision to head to Paulton Park. However, once inside and queing up for rides, Harry had no patience and was quite snappy, a side effect of the medication. He also struggled to wee again, another side effect. He also nearly fell asleep in some queues! I thought Callum would have struggled with the queues, but it was Harry whom was quite emotional at times.
Peppa pig world I would say is over rated! Great for really little children 2-3 and I know Callum is still only 3, but it seemed quite tame! I think having been to Lego land where Callum clearly loves a few adrenaline rides, we actually didn't spend too much time in Peppa pig world. It was also so very busy, but the rest of the park quiet in comparison!
We went on quite a few rides, splitting up whilst daddy and Harry go on a roller coaster that Callum is too small for and Callum and I go on the log flume and another spinning ride that Harry and daddy wouldn't like!
A good day was had and Harry livened up towards the end of the day!
On our return back to the lodge, Harry's pain had returned and I decided to increase his fentanyl patches. Particularly as these seem to create less side effects for Harry.
We were sad to leave our holiday home, as we really had a fun week and I guess completed more adventures on our bucket list for Harry.
For the majority of the time Harry has been 'the old' Harry, which has been so brilliant to see. We have felt recently that we had lost him at times, due to pain and medication, but it has done us all good to see our fun loving action hero be, well Harry!
We broke up the long journey home with an overnight stay at my sister's who lives near London.
Upon arrival they were in the process of putting up a play house for Olivia age 15 months. The boys loved playing with the boxes and once built loved playing on and in the house. Lovely to see the cousins interact and have fun together.
We have finally made it home and it is very evident that Harry is struggling with pain. This time it's in his tummy. He has tried so very hard to put a brave face on today, but he has slept a lot and is in a lot of discomfort. This is where we are filled with sadness and I really think that Harry has a lot of cancer cells in his upper body now. I will be liaising with our Mcmillan nurse in the morning and I will keep you updated too.
We are so very grateful to everyone's continued support.
We have had the best week, we could have hoped for, created many more happy memories, but I think very, very sadly Harry won't recover from this new spell of pain, but we shall see.