Friday, 4 October 2013

4th October

Since Harry's birthday we have been struggling to comprehend how we ourselves move forward. It's 6 months since we heard that Harry had relapsed disease and he's still here and doing well. He's been into school everyday for part of the day and he is able to enjoy life and participate in beavers and cycling club. We are immensely pleased and proud! However - we feel like we are being given a gift that at some point will be taken away. That is the hard part to swallow. Life is therefore bittersweet. 
Over this last week I have been trying so hard to think of life and not death and i feel better for it. We have to think that Harry is going to remain with us for the foreseeable future and think about Christmas being with him and not possible without him. 
Since the last 6 months has been turbulent and at several points we thought we were approaching the end, then yes death has been in our thoughts. 
It will always be there, but as said Harry has now outlived the life expectancy the medics thought he would probably have. 
We have given everything to the last 6 months to make them memorable, quality and valuable. We have achieved this, but now we need to focus on doing the normal things! Just trying to live and not chase the next big day out etc! 
It is the party season as Harry and Callum's friends celebrate their birthdays too! We have a fair few parties taking up the diary! 
We have also made the decision to have Harry scanned again. It will not tell us the future for Harry, but it will tell us where those pesky cancer cells are and could give us an indication of the level of pain Harry would be expected to be in should we lower the dose of his pain relief medication. I think we have a need to know what is going on too. I know the scan is only accurate for the day it is done and the day after who knows what the cells will do. We accept that though! 
Another decision we have made in conjunction with our Mcmillan nurse and the doctor at Martin House has been to change the type of pain relief patch that Harry has been on. He has been on a fentanyl patch since may, but he had never really got on with them. They make him sleepy, he gets agitated at times, it affects his memory and ability to concentrate at school. Sometimes life can be very hard living with Harry. 
On Wednesday instead of putting another fentanyl patch on him we changed it to buprenorphine. He has 2 patches to make a dose of 45 micrograms. This is slightly lower than the 50 micrograms of fentanyl he was on.
Wednesday night was horrific. He managed beavers, but upon getting home he was tearful and agitated. We got him into bed quickly, but sleep would not come. He usually zonks out! I reread the side effects and one is sleeplessness, restlessness and agitation! I felt like we had done totally the wrong thing changing his medication. I had additional anti sickness medication at the ready, as vomiting is another side effect. At 9 pm Harry was complaining of his stomach hurting and feeling sick, so the anti sickness meds on standby got shovelled in!  This makes him feel better, but he was still restless. Come 11.30 pm I ring theoncology  ward for advice. I am given the number for the on call Mcmillan nurse since the ward were not up to date with his current prescription. I resist making the phone call as around midnight Harry finally settled and sleep fell upon him! Sleep was fitful for us wondering what the next day had in store. However, he awoke as bright as a bobbin at just before 8 am wanting to play with Callum in his bedroom! Lovely! It's been a very, very long time since Harry has awoken so early being so perky!
I decided to take the morning slowly and give Harry time to digest his breakfast and medicines in case sickness was an issue, but it wasn't and it was school for Harry for 10.30 am and today it was 9.30 am! We feel hope is there if this new medicine can help Harry feel more alert, wake earlier and have less fog clouding him! It's very early days, but we can hope and pray that these buprenorphine patches can give greater quality of life to Harry and thus greater quality to all our lives! 
With Harry and Callum in school and nursery we head to the citizens advice bureau. We are confused by the benefits system and the fact that Paul has to make a claim to the newly branded employment support agency (ESA). His HR told him  he had to make a claim with regards sick pay from the ESA. Having been on sick and full pay for 28 weeks he has reached his entitlement that comes without assesment. He now has to be assessed to see if ESA can part pay his continued entitlement to sick pay. Apparently there is a period of 13 weeks assessment via ESA and everyone gets £100 a week, this will be deducted from paul's pay from work untill he's assessed and an actual entitlement is decided. When Paul rang ESA on Wednesday having spent 30 mins in a queuing system and an hour on the phone going through questions that included my details too, we were perplexed! You are probably perplexed reading this too!
Thus our visit to CAB. We wait an hour for our 10 minute assessment slot. Not knowing where to begin, I outline the benefits we are currently on, Paul takes over and very briefly explains why we are in the situation we are in, ie Harry has cancer and now he is terminally ill. The worker dismissed what we said by rounding it up as a 'sad story' but asking what did we actually come for! I was gobsmacked! Paul went onto explain about his work and situation re ESA, but the man though saying how the benefit system is factually, made us feel like we were evaiding work. I ended up in tears and told him how he could show us some empathy, how he wasn't being nice, how small he made me feel, how difficult it was for us to come and ask about benefits and how we desperately wished we could work! He changed after that, became more helpful and apologised for his manner at the end. The problem for me, was once I lost my composure I struggled to regain it, realising how close to the surface my wounds are and how vulnerable I am.
The long and short of it is that Paul has to go through an assessment via ESA. His work will save £100 a week whilst this assess process takes place. Paul will get £100 a week from ESA, plus the rest of his contractual entitlement from his work. Once he has his medical he will be very likely deemed fit for some sort of job with low key responsibilities and he will qualify for nothing. Which is ok for now as his work for the remainder of the 6 months left of sick pay will make the money up! It's a bureaucratic process to alleviate Paul's employer of paying in total £1300, but a whole lot of stress added to us! Oh and ESA don't need all my details for Paul's claim, so what that was about I am not sure!
To round up, we are inbetweeners to all systems! Not fitting criterias etc! Grief, physical and emotional exhaustion counts for nothing in the eyes of ESA. If Paul acted up and tried to strangle the medical officer in his forthcoming interview they may believe he is not fit to work,  he may risk getting arrested or sectioning and that leads to ever more paper work and bureaucratic drivel so not a good plan!
We have had our eyes opened yet again to the benefit system. As the new assessment system tries to flush out the work shy we are assured that we will never qualify for sick pay from ESA as we are, as they would deem us able bodied enough to do some sort of work.
Thus it all goes back to those petitioning at present for an acknowledgment from the government that the monumental loss of a child should have greater than the 3 days paid leave currently granted to get over the loss! 
As you can imagine my scheduled appointment to see Jan, the psychologist  at Martin House was very much well timed this afternoon. Having not seen her since July, I think I was a pressure cooker letting off immense steam! Thank you Jan for listening and giving me all the time I needed! 
I will leave you with a link to an e-petition requesting the government to make statutory requirements around the length of time employers and I feel ESA should give for bereavement leave and pay. Hard to put a time scale on it, but the standard 3 days is utterly ridiculous. Mother's are given 9 months statutory maternity leave and father's are given 2 weeks statutory paternity leave on the birth or adoption of a child to nurure, bond etc. When a child dies outside of those timescales 3 days is what is standard paid time off! This has to change! 

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