So sorry that it’s late tonight but after a very big meal for me tonight I just fell asleep and I have woke up feeling so much better for it.
So this morning I didn’t feel well at all and Steve was very concerned as I just couldn’t focus or keep my eyes open. I really didn’t feel well at all. My day continued to improve though and this evening I do feel so much better :-).
Mom returned to us at midday and I’m so happy to have her back with us all.
So many special things have happened today that have made me so happy. Firstly I had two very special gifts for Daisy Den from two very special friends, thank you both so much.
The new front room furniture will arrive next week and so after the longest time we can at least all sit together as a family and have quality curfew time, whatever we want that to be but we can all be together and that’s so important to me.
Parcels have been delivered for our new bed and I just can’t wait for this to be fitted so that I can sleep again with my Mr Wonderful.
The Calendars arrived and OMG I am so proud of what Steve has achieved. They are so professional looking and I even made my first two sales to Sue our new cleaner, who has been a life changing addition to our team here.
So this post is again short but sweet as I am so happy that everything is finally coming together here.
My final thanks is to my BHS family who have been so supportive and made things like the calendar possible and the changes our my home.
And final final thanks to my Angel Rita and everyone else who is praying for me and continuing to support me through this journey, I can’t thank you enough.
So this morning after another sleepless night I really didn’t feel very well at all, everything was such an effort. I called mom this thing and she was worried but she is back down tomorrow and I’m looking forward to that. I had a call from the hospital to say that I wasn’t doing as well as I should be in terms of fighting off this infection and whilst the intravenous drugs being given to me at home every day were due to stop tomorrow I have to continue the treatment for another week. This will possibly delay me starting chemo again but I have to be strong enough to be able to cope with that so I have to be guided by the experts.
Just before treatment started the wonderful Emma from my BHS family in Kingston came to see me. She stayed and helped me set up Daisy Den, well we made a bloody good start. It was so lovely to be with her again and we had a lovely time.
Now these are only the first photos and I need shelves for all my Daisy Den gifts but at least it’s the first chance for you to see inside Daisy Den. It’s so warm and cosy in there and I’m going to love it. Molly Moo already does LOL.
Now tomorrow we will have our allocation of the Calendars arriving, I’m so excited as Steve and I haven’t seen them yet. I’m so proud of what Steve has achieved through this and we will potentially raise £14,000 for Beating Bowel Cancer. I also have to thank my BHS Family as without them funding the print run the profit to the charity would have been reduced so thank you so much BHS XX
So that’s you lot up to date for today, again sorry it’s short but it’s sweet and I need to rest. Love to you all xx
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.
Okay so hearing about the experience of the past two weeks and seeing it is completely different, so here we go with the experience of the horror on Ward 10.
Firstly this noise went on all night long
Seeing how I am now in terms of the Lymphedema and the state that I was in whilst in hospital, again very different to see.
Just to cheer you up
Now this post maybe short in terms of length but it’s all about the experience. The sounds that went on throughout the night that meant that apart from the bed I couldn’t actually sleep. The visual look of my body and what state I’ve been left in.
I hope that the short post will again back up the need for me to withdraw from you all for those few days.
I have also been now signed of sick for a period of two months from work with a review period so that if fit and well whilst on Chemo I may be able to commence project work at home. If not then this sick period will be extended.
Whilst on my treatment break I will be taking a long weekend break with my Mr Wonderful and you never know I may turn up in a store near you
If Chemo is going well then at some point the extra KRAS gene funded treatment will be given and this could extend my prognosis by up to 2 years.
When I say that I’m doing things properly this time, I mean that I will take responsibility for my recovery and for once I’m putting myself and my loved ones first. A cleaner started today and this will mean that neither me nor my mom nor Rebecca will have that extra pressure and we will be taking more of those picking daisy moments when we are together as a family.
Internet orders for food shopping will be placed weekly so that this takes away the stress to Steve of yet another job that he was doing.
Changes to our home are nearly complete so that I can manage the best that I can at home whilst recovering. Pictures to follow.
I will be following up the estimated delivery times of the Calendars tomorrow and I will post up when they will be available at the chosen 11 BHS Stores.
I will continue to raise awareness about Bowel Cancer with your help and support by sharing my blog but not at the expense of my health any more.
I will attend Parliament and continue to challenge the unequal funding between Scotland England and Wales. Do whatever charity work I can do, to include interviews, press and any other form of media but again only if it isn’t putting my health at risk in any way at all.
So there you are ‘Wart’s and All’ as normal and that was always the deal with my blog. I hope that you will now understand the whole picture.
My BHS Family have been so supportive and I am so pleased when I read the comments left on my blog on how you now see BHS in a completely different light as the fantastic company that I know them to be and love them for everything that they have done for me, for fund raising and for the massive amount of love that they have given me. So many people facing this awful disease lose their homes or are dismissed as part of the process of employment rights, for example a contractor would just have their contract ended and this happens to people. I could have been facing all of this, losing my home but instead I consider myself very blessed.
The next iBook will be free as this was never about making money for us. Your words via the comments pages will form part of that book, I have already had fantastic reviews left on iBooks regarding this so thank you for leaving your reviews.
And finally thank you to you all who have sent me extra soft furnishing presents for Daisy Den. Karen Brindle AKA Potter sent me today the most amazing hand made bunting which is just beautiful, again photos to follow when it’s up. And I have also received a handmade Daisy Den sign that is already in place, photos to follow.
And really really finally I must thank my Angel Rita Jackson who championed me for the SOS fund that has provided the NASA state of the art bed that will change my life with Steve and again this has been given to me by my BHS family. Sometimes there are just never the words to say thank you but I am as is my family eternally gratful for what my BHS Family have done for me.
Well hello to you all and I’m so sorry that I haven’t been blogging but I’m back and ready to go.
I have missed you all and I just want to thank you for all your comments and good wishes. I just needed some time to get my head around the last week or two. What a whirlwind of emotions and trauma we have had. My poor loved ones have suffered so much and seen me so ill. We went on Friday the day of the Abseil from at 10.30 to you can go home at midday to a Doctor coming to see me at 12 o’clock and saying forget cancer if this infection and the abcesses are around your heart you won’t survive two weeks, emergency scans followed and I’ve got the all clear. How do you process all of that?
Sepsis is awful and I was paralysed, I couldn’t move my body at all. Being in hospital was just terrible and I didn’t sleep at all whilst in there, or eat.
I love being at home with my loved ones and behind all the trauma they have been working so hard on Daisy Den and so that I’m happy when I get home. I am so blessed, I’ve cried so much, been through so much and yet at every turn there just seems to be a lucky angel looking after me. I think I was within hours of death with sepsis and when Steve called the Ambulance. Apparently our house was full of medical team within 4 minutes and can you imagine Steve standing and looking at all of this this unfold. I was out of it and as they suffer you don’t remember just flashbacks. The stress and worry day after day has taken it’s toll on us all.
So where am I now? Well grateful to be at home. The whole experience has left me in a bit of a sad state, I’m bruised and battered physically but that will get better every day. I’m left with a very attractive set of legs. My right leg has lymphedema which is where lymph nodes are removed and your body is fighting an infection it can swell up, very sexy and I have to wear a special stocking all day. I can only fit into my UGG boots so it’s a good job winter is here. The nurses come in everyday and I’m hooked up to a drip of antibiotics and then that’s it for treatment at home until 6th November.
Steve and I saw the Oncologist on Friday and we have a plan. They need me to be fit and well enough before we start Chemo again so I get a treatment break which I’m both happy and concerned about as the longer I’m not on chemo the risk of the cancer getting into my organs is higher however they are the experts and they say if I start chemo again too early I may get sick again and I don’t want that. So the plan is that I start chemo again on Wednesday 18th November and this will be cycle 5. That’s the normal chemo and then they will layer the extra chemo on top of that. The KRAS test being returned to me as having the Wild type of cancer which is good for me as I can have the extra treatment that may extend my life by up to 30% and not good for Richard and Rebecca as I have left them with the potential to have the inherited gene. Now I have told them that annual paid for tests is the only way to go. They have to be aware of the risk to them and their children. This is no bad thing actually as we all take are health for granted too much and think bad shit will never happen to us but it does and if you are aware of the risks you have control.
Now I’ve got to say how overwhelmed I have been by my BHS Family. They are paying for me to have a ultimate, state of the art Superbed which will mean that after months of not being able sleep with my Mr Wonderful I will be able to. How on earth do you ever say thank you for that? The price is unbelievable for a bed but like the hot tub it’s a life changing piece of equipment for me and Steve.
The other thing that they have done is to agree to distribute the Calendars to all stores from our house as we were going to have to do this ourselves to save you all the cost. How fantastic is that? Plus they have agreed to Merry Hill being an extra store so this takes all the pressure off my mom. How wonderful is my BHS family? They are just so fantastic and I can’t begin the thank them enough, sometimes there are no words big enough.
So I’m back to you all as I get so much love and support from you all, and it’s slowly but carefully fightback time
I’ll be blogging again every day, don’t you worry with photos of Daisy Den. Thank you all for your love and good wishes.