Okay so here we go with the full background of ‘Warts and All’ first. This is going to be a very long post so you have been warned, no reading in the loo or in the bath!
Although I was discharged from hospital on 27th October, Rebecca and I on the 29th October returned via a taxi to the A&E department. I was in so much pain in my back due to the size of my tummy which has been caused by the lymphedema that I need to know if there is any medical reason why I can’t go to the toilet. X-rays were taken which left me in total bits as they insisted that I lie on my back and I can’t move. The pain is unbearable and I come out of the department sobbing as Rebecca knows how much pain that I would be in as they made me lie still on my back. The results showed that there was no medical reason why I couldn’t pass any bowel movements however the X-ray did show a mass of excrement that needed to be moved. I was glad there was no medical reason why I couldn’t go and so it was up to me to make this happen. We returned home via taxi and that cost us £60 that evening but it was quicker than waiting for an ambulance.
I talk about the £60 as this comes out of the awarded PIP money which the Ian Reenie nurses organised for me. Its a benefit which is awarded to any terminally ill people with less than a year to live. It is not means tested and I have been given the maximum amount of £139 per week. The taxi money was what this benefit was designed for, supportive expenditure that you would not normally have to pay out on a weekly basis. This money has also funded the cleaner that I spoke about in yesterday’s post. Now the cost of the cleaner will take all of the weekly amount awarded but it’s worth it to reduce the stress to my loved ones and it enables me to focus on looking after myself the right way this time to ensure I am as healthy as possible.
As you know, I was lucky enough to be able to release some money from a pension fund due to my diagnosis. This has enabled us to do some work to make our home more comfortable for me. Daisy Den and the Hot Tub you all know about. I have also helped Steve buy a car as if I died we would not have a family car, as my car is a company car. I brought new furniture for the front room, this furniture reclines and is essential as it means that we can all be together as a family in our front room. I’ve ordered myself a new phone as my current phone is broken. Garden work to our home so that I can get around it safely. New patio doors for in my end of days room. New furniture for my end of days room. New office furniture for Steve as he works from home so much now and it is his responsibility to comply to with H&S. A new bed has been gifted to us by the BHS SOS fund. Finally a new fire to complete the front room.
Here are some of the photos of those changes taking place:
A few months ago I was given a prognosis of 18 months from diagnosis when we knew that the first chemo treatment hadn’t worked. More recently Dr Weaver was asked to write a report regarding my prognosis for our life insurance company. He is now saying that on the balance of prognosis that if the new chemo works and that the extra KRAS treatment layered on top of the chemo treatment also works that my prognosis may now be 2 -3 years. It is great to know that not only do they think my prognosis of life expectancy has or will improve and that as long as the cancer is not in my vital organs I could actually after completing treatment be one of the 9% that actually survive and beat Bowel Cancer.
My decision to take a sick note is massive for me as I have continued to work apart from the following dates. Signed off for one week on 7th Feb, signed off for two weeks from 11th Feb and finally signed off for 4-6 weeks on 28th March. Apart from these dates previous to that I didn’t have a sickness issue at work and I want to continue to work and contribute to the company that I love to work for and is so important to me. So I sent Amanda Taylor in HR this email to explain the plan to her.
It was lovely to talk to you today and here follows the plans proposed for the next two months:
Chemo starts on 18th November until then I have an enforced break from treatment to ensure that I am able to cope with cycle 5 of the planned 12.
If I can cope with the normal chemo then at some date they will administer the extra KRASS chemo which could extend my life by up to 30%
Last date of intravenous treatment at home is 5th November. Then no more treatment at home at all until we start again on 18th November, following suitable blood tests.
I have attached a PDF file of a sick note which covers me from 03/11/2015 for two months and then I will be in contact as regards my health and the possibility of returning and commencing with project work at home.
I will be taking a long weekend break somewhere before my treatment starts again as a short holiday and I’m telling you this as I want to be open and honest with you all.
I will post the original sick note into yourself tomorrow so that you have it for my file.
Please could you inform Kingston BHS of the sick note so that my wages can be processed correctly.
I hope that this is acceptable and that this email completes our paper trail for your records.
I would just like to add a massive thank you for your support and understanding throughout this difficult time.
This PDF is a copy of the doctors sick note
So yesterday morning I had my bloods taken as well as intravenous treatment. As this treatment is due to finish on 5th November I also had a home visit from my Doctor who brought me my sick note, she checked all of my vital signs, which were all fine. The District nurses arranged a prescription for the enema which I was comfortable to do myself as the pain I am in is putting pressure on my already swollen tummy due to the lymphedema and if I can open my bowels then we believe this will relieve some of that pressure plus I have to be able to control my bowels on a daily basis. The enema was successful and finally I was able to move my bowels.
3rd November, yesterday I had already contacted my mom to inform her of what was going on and that I would call her later. She was worried that I had left this so late, so update with her complete I was just about to return to Steve when the phone rang. It was a doctor who had received the results of my bloods and that he wanted to come and see me, this was about 10 pm. My bloods were showing that I had a very low potassium level. He arrived and took all my vital tests again, blood pressure etc and asked if I was short of breath. I explained that I do struggle to walk around the house as I am weak on my right leg due to the lymphedema but this hasn’t changed. He said that the levels were so dangerously low that I may be at risk from a heart attack which would be fatal. Steve had to go before midnight to a pharmacy to collect the potassium prescription and that I must take straight away. He said that the blood tests would be run again tomorrow to see if the bloods changed or if the levels had returned to normal and that in the event of any symptoms of accelerated heart rate or shortness of breath I was to call 999 immediately. So after putting down the phone to my mom saying everything was fine I was back to a potential life threatening prognosis. After taking the potassium within about 1/2 hour I did actually feel better within myself. It’s now 3.30 pm today and I have just received news from the Doctors that my potassium levels are completely normal and I am not at risk of dying at any moment! How much stress can I take? Plus I was advised to stop taking the prescription.
This morning I had a delivery and I had no clue what it was. It turned out to be a present from all of my BHS family the HR team at Head Office just to cheer me up and here are the presents.
Last night prior to the doctors call I was arranging the planned break to one of the nominated stores to do a weekend away as pre arranged with BHS. Honesty is very important to me and we now have a delivery date to my house of the Calendars for this Friday, 6th November. All 10 stores will now receive their full promotional packs by Tuesday 10th November, confirmed today by Leanne Sinclair at Beating Bowel Cancer and the Calendars will be on sale in the 10 nominated stores by Wednesday 11th November. The plan for the 11th store, is for me visit the Isle of Wight. The hotel and ferry are booked. The photo opportunity, signing of the calendar my Mrs October herself will be a fantastic promotional opportunity for BHS as a company and the Calendar sales. So it’s all systems go with the planned visit to the Isle of Wight, the agreed treatment break but with BHS aware that I am going away, and will be continuing with my blog.
I’ve also just had confirmation that the new bed will arrive on 25th November and the new fire will be installed on 27th November.
So there you have it complete transparency and honesty with everyone.
Final thanks to Rita who upon hearing all the good news has gone to church to say prayers of thanks. Thank you my Angel.