feeling lost and its feeling real.

The past month or so has been a real tough one. I have been unwell again with my heart filling up with fluid again. This time I left it as long as I  could without getting it drained off.

In the end I felt that breathless I called for an ambulance, I have never felt that breathless in my life. It was a frightening experience, one I hope to never experience that bad again.
I was ambulanced to our nearest hospital and was looked after very well. I was very lucky I didn’t have to wait too long before my treatment started. Chest x-ray, bloods taken. The following day the pericardial effusion was drained, 1.5 ltr was removed. I felt much better, I was on total bed rest, every time I sat up my heart rate would jump from 88bpm to 105bpm. my blood pressure was fine, most of the time. Over a period of nearly a week my heart started to recover and settle down. I was in the high dependency unit for some days and as I became better I was then put in the ‘step-down’ unit, I had my own room with a view and en-suite, I felt very privileged. I came home after 5 days in hospital.

I have since found out from seeing my heart surgeon that if I was transferred over to another local hospital which does the ‘window’ heart procedure whilst my heart was full of fluid the window could have been put in then. As this hospital was only told after my heart was drained, I now have to wait until it fills up again before this can be done.

After I saw my surgeon, I then had a pre-op done, so when the time comes to get it drained again this process had already been done. One of the questions I was asked was: ‘where do you have cancer?’ I took a deep breath and replied ‘my chest, lymph’s, ribs, heart, lungs, spine, pelvis…. I think that’s it’
I then realised how much this disease is eating away at me, I am becoming weaker and needing more sleep. I don’t feel motivated to do anything.

last night (thurs) I had my 1:1 time with Vince. we had a lovely time Christmas shopping for other children, went out for dinner, the time we spent together was great. whilst he was getting ready for bed he sat and cried, we spoke about lots of things, his biggest fear is me dying. He wants to be with me all the time, when he isn’t with me and his mind is distracted when he is playing with Noah and Daniel, he seems ok.
This isn’t and its not going to be easy for any of the five children or the two parents that will need masses of support, weather its professional support, family or friends.

I talk about my death and dying very openly. I compare how well I was last year to this year, what about next year? will there be one for me?

I am going to give myself a slap and shake myself out of this self-pity.

chow for now.

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A Year later…

I am a year on from my terminal diagnosis, it is nearly three years from my primary diagnosis.

I really don’t know how to feel about it all at the moment if I’m honest. The year has flown by, we have recently got into a new routine where the children stay with Paul and Becca two days per week. This is a great amount of time for me to recharge and relax knowing they are in safe hands. this then gives me a lot more energy to get through the weekend without feeling exhausted. All five of the children seem to be settling well with the new routine.

I have started writing down all the important information in a little book for when I’m no longer here. I am hoping this blog will continue with all the great things the children will do and become, so they can read it, so it can all be shared with everyone. The children then can show their children.

The GSO (Guardianship Order) has started, the children have been interviewed. Vince especially fund this painful and cried as he wants to live with me always. He knows this cant happen. They all have amazing times making a family of four to seven. I get sent lovely updates and sometimes pictures of what they are doing. I will post some on here soon. The GSO will enable Paul and Becca to make decisions about the children if needed, for example. in an emergency situation  I give them permission to make a decision on my behalf. The GSO order is a very complex order. lots of professional bodies are involved and this isn’t cheap, its approx. over £1000.  Nothing is simple in the process of dying young. when the GSO order is complete I will then focus some of my time on organising my funeral.

As you can probably tell by this jumbled blog that I have so much stuff in my head that I need to ‘file’ it soon.

I would like to thank Claire Searle, a mum at our school who is running the Great South Run at the end of the month and trying to raise money for us. It is really appreciated Claire. Thank you.

My ‘nerve ending pain relief’ I am taking is on maximum dose. My Rowans/Macmillan nurse is letting my Oncologist know this. I am having pain in my pelvis and pains going down my legs. It is likely I will need Radiotherapy again, this will hopefully help with the pain, its just a ‘wait and see’ for me with that one at the moment.

That’s all for now folks,

Please can I ask you: if you wish to ‘make a comment’ please can you do this on the blog and not on social media, this gets ‘lost’. I would like the children to be able to read them at a later date. Thank you 🙂

 

 

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The Emotional Pain and The Physical Pain of Cancer

Upon reflection of the past 3 years, from finding the lump in the shower on my right breast, to having it totally removed with my lymph nodes too. Two months later I started six months worth of Chemotherapy which then followed 3 weeks (daily visits) of radiotherapy to the inoperable areas around my right breast, collar bone, ribs etc. From there nine months later I had breast reconstruction, basically a tummy tuck. The skin, fat and blood vessels from my tummy reshaped to make a breast. Six months later (Oct 2015) I was diagnosed with secondary breast cancer, basically the cancer has spread to other areas of my body. more radiotherapy. Two weeks later I had a total Hysterectomy. Four months later I had 1.7ltrs of fluid in my pericardium (the sack in which my heart sits) this was an emergency removal of the fluid. I then had 5 rounds of chemotherapy as cancer cells were shown in the fluid, which means cancer has spread further.
So, basically that is what has happened to me in the past three years.

The emotional pain of all that has happened is such a big load, thankfully I have seen a therapist the past 18 months to off load to. It is all starting to sink in and its starting to feel real. I think now that I am unable to do as much as I used too. I do push myself at the weekends when the children are home with me as I cant have a snooze to recharge these worn out batteries.

I have in the past few days been listening in on the children chatting and playing (on the whole) and how lovely it is. I stopped and listened to them, such precious moments.
It breaks my heart to think I am nearly a year later from my second diagnosis, how much longer do I have? how many more conversations am I able to listen in on?  Is this emotional pain I feel comparable to the physical pain I am in? Yes, I think sometimes it actually is.

I am mourning for my death before I have even died, how can I miss the future that I wont experience.

Before I was told I had cancer the second time, I always had a ‘niggle/fear/worry’ at the back of my mind that it would return. Any ache, or pain, any headache… was it back? for anyone who is in that situation, my heart totally is with you.

I know there wont be a day in my life where I am not thinking about cancer or the destruction its causing/ it will cause amongst my family.

When I see/hear how much fun the children have when they are with Paul and Becca it reminds me how inadequate I am now to them. I am truly grateful I can give them the kisses, cuddles and story times. Its a different kind of fun. I will never be able to thank the amazing new family who look after us, even now.

The physical pain I have is in my knees, spine, chest, feet and sometimes in my hands and ribs, I am on a good cocktail of drugs to keep me mobile, since the children have returned to school I am trying to walk everyday. it does exhaust me but the exercise does me good. I cant cram activities continually/consistently in the six hours that the children are at school anymore. I know that and have accepted that I cant and I only do one activity in the day to enable me to rest or I pay for it.

I try my best everyday to see the positives in everything,
I try my best to think positively about myself and that I have woken into another day. One of my biggest fears is not waking one morning and the children finding me. I really cant think about that for too long.
I do find waking in the morning very, very difficult. Waking/being woken before my body is ready is something I find increasingly difficult. I have to motivate myself, I really do try and I do get there in the end. I am much slower in the mornings and find things, taking a shower and doing the school packed lunches too time consuming now, so they are done the night before.

If I think too much about what the future holds for us I will crumble, then I’m no use to anyone. so that part of it is locked away in a box somewhere in my head.

sleep well and thank you so much for reading.

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Letting Go

I have really found letting go of the children such a painful experience. Physically and emotionally hard letting them go. knowing at some point (maybe soon) I wont be able to care for them full time any more. I know in  my heart that I have made the right decision for my three children. It still doesn’t feel real. How can this be? I should be looking forward to a great future, I’m 36 and shouldn’t be sorting out my funeral.

I now struggle to have the children all the time without a break, I struggle to ‘parent’ them in the way they need. two days in the week the children will stay with Paul and Becca, except on the Thursday in which one of the children will have 1:1 time with me after school and overnight.
This week I have had Skye 1:1, Skye chose to go out for dinner to her favourite restaurant, she invited her Aunty Kirstie and her cousin Shannon. Where the restaurant is situated it makes us feel like we are on holiday. Sitting by the water, watching the boats moored up in the marina, lovely warm evening. It was such a treat to just have some girly time.

My body is getting weaker, I get worn out quicker, I need much more sleep, my memory is awful, I need help cleaning around the house, gosh reading this I sound like a right lazy thing. In a few weeks time it will be the first anniversary of my terminal diagnosis. I feel very lucky that I have got this far, I wonder how much more quality time I have left. that is a question no one knows the answer to, I am determined to make the most of every day I have left. Even if it means I sleep/rest more.

One thing I really do miss, is girly time with the mums from school/any of my friends. cancer is so isolating and a lonely  place. Its been 3 years now and I fell as if I have missed so much. – Sorry for the moan –

I hope the children remember the things we did together. That all 3 have a close relationship, I hope they talk about the fun times with each other. I would love to be remembered as a mummy that tried her hardest. I hope that the children tell their children about all we did when they were children. I wonder what the children will grow up to be. As long as they are true to themselves and are honourable and true. I don’t mind what they will be.

Next week I am really looking forward to going into my friends jewellery shop and she is teaching me how to make some jewellery for each of the children. I took Skye in there this afternoon. She looked in every cabinet and chose one of the most expensive rings in there. She tried one of them on, Nikki educated Skye about diamonds and what size is acceptable to receive. (it wasn’t a serious chat)

Take a day at a time peeps.

that’s all for now. Thanks for reading

 

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Centre Parcs – Longleat and The Safari Park

Loads of laughter, some tears, some stress, lots of swimming. Happy Times

We were blessed with a mini break to Longleat Centre Parcs. We had never been before, a new adventure and our 15 year old car served us very well. The accommodation was amazing, the best I have ever experienced in a self catering accommodation.

we had the opportunity to bring an amazing family friend with us, Denise. She oozes love, patience, experience and much more. The first evening we arrived we had dinner in Hucks, this was inside what felt like its own climate, it felt a little like paradise. With waterfalls, fish, a bridge over the water. Palm trees, shops, restaurant’s, swimming pool. All under one roof. I appreciated it all, knowing how expensive it is to stay there and all the extra activities. Without the help of a friend Susy we wouldn’t have had that break. Thank you Susy, we truly appreciated it.

We enjoyed feeding the squirrels from our patio door, so close they came. Very friendly little creatures. They seemed to enjoy the grapes more than the apple or bread.
The children went out on an adventure with the walkie talkies, not realising the station that they were set on was the station that the park was too. some funny conversations the children had with the workers. Blake spoke down the walkie talkies “who are you? identify yourself” we were in stitches of laughter. lots of fun we had.

We went to the pottery lounge and had our hands imprinted in a playdoh of some sort. We waited 24 hours and they had been finished off beautifully, framed in a light oak and our hands had been painted gold and the background black. IMG_2082

I had booked with the massage parlour to have a back-neck and shoulder massage. I was thoroughly looking forward to it, I had the transport arranged, so off I went. I really enjoy a massage, its a luxury I really enjoy. I arrive at the centre, I was politely welcomed, look my coat off, was told to get changed into a dressing gown. I was advised to walk through the restaurant and to sit and wait in the waiting area. A lady approached me and asked me to fill out a questionnaire, so I did that and went through to the massage room. It was beautiful, soft lighting, a shower cubicle, beautiful relaxing music, you’ve got the picture. The lady sat me down and told me that unfortunalty because I have cancer, on medication and had a DVT they aren’t allowed to treat me. its their policy, I couldn’t even have a manicure. I broke down, the tears were flowing. I felt like a leper, I got changed trying not to show my face to others, my bloodshot eyes from crying. Another thing cancer has taken from me, the freedom to relax and enjoy myself. To have an hour or so for me.

IMG_1690 IMG_1775 IMG_1683 IMG_1714 IMG_1718 IMG_1719 IMG_1732 IMG_1740 IMG_1746 IMG_1748                We enjoyed adventuring around the park, We absolutely loved the swimming pools. The wave machine. We swam outside at night which was absolutely amazing. The pictures here are of when we played adventure golf. The children tried to remove the sword from the stone. This was an enjoyable 9 holes.
the children loved toasting the marshmallows on the open fire, learning not to heat them up too hot.

We went to a pancake house. this is where the children  had crazy drinks but they loved it. This was on our last night.IMG_1831

On our last day we took a trip up the road to Longleat safari park, we had an amazing experience. The monkeys jumped all over the car. The Male lion was roaring, we went on the boat ride and fed the sea lions. we saw the second eldest gorilla at 54 years old. He was massive. We saw and stroked a skunk, he wasn’t too smelly. Whilst we were driving around the safari park we saw the Tigers eating their breakfast. This was a real treat for us as we were so close to them.
I would really like to take this opportunity to thank those who have made this dream come true and given funds to enable me to make memories with the childrenIMG_1943. IMG_1941 IMG_1940 IMG_1935 IMG_1933 IMG_1893 IMG_1894 IMG_1895 IMG_1897 IMG_1900 IMG_1879 IMG_1862 IMG_1858 IMG_1837 IMG_1836IMG_1752

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Honestly… Life Is Crazy

Thanks for reading this, my latest Blog (16-08-2016)

I apologise for not writing for sometime. Firstly because I have not been well, physically or mentally. Lots has happened so I apologise if I jump about from one thing to another, ill try and keep it together.

Firstly id like to start with my recent hospital visit to Dr A. my recent brain scan showed no evidence of disease, The Mri scan on my spine showed cancer in/around my 8th vertebrate. Lastly the CT scan showed no further advance of the disease spreading. My Pericardial effusion is clear (the cancer cells in the cavity around my heart). The Bone treatment which I have injected every 4 weeks is working, its hardening/strengthening my bones and slowing the spread of the disease.
Before I went to see Dr A. I had decided that if she wanted me to have another cycle of Chemotherapy (which would have made it 6 cycles) I would refuse as it would be the summer holiday and I want to feel well. I had explained to her how much the chemo was effecting me. I struggled cognitively, I would go into a shop and not be able to think or remember what was needed. My brain was literally blank. I wasn’t able to cook a meal, putting the ingredients together was a real task, I didn’t know how to do the simple tasks of cooking a meal.
The Drugs that I am on make it harder for me to wake early in the morning, so the school run is a real challenge.
Anyway, back to Dr A. I had explained all this to her and she wanted me to stop the chemo and start on steroids, to help bring me back to ‘normal’ I think I was on these for 5 weeks.
After I had finished the steroids I was very sick for a couple of days, hot and cold. 3 days sofa/bed bound. A huge thanks to Nise for coming over to the rescue and sorting the children to friends for me whilst I recovered. Thank you so much Emma and Kirsty for having Skye and Blake. Thank you to Jan for helping me with the housework. Thanks to those of you who have brought a delicious meal round to us.

I really wasn’t well, I felt so cold but I was sweating so bad. I had shortness of breath, umoungst all of that I was having really dark thoughts. To end all this, to take all the drugs, it was all too much for me, the being weak and ill. The thoughts of having terminal cancer. The impact my death will have on the children. At that point I realised it would be them who would find me if I had gone through with ending my life. That was the point that I realised they need me to carry on fighting. Fighting the pain daily, taking the drugs, being absolutely shattered and the demands on my body that being a lone parent of 3 very lively children bring. Thankfully those thoughts come round very few and far between. My children really do ‘get me up and keep me going’.

So, currently I have cancer in: My Clavicle, lymph nodes in my chest, my heart, rib no.8 on the left side, my pelvis, nodules in my lungs and tumours in the tubes to my lungs. I think that’s it.

The days are getting better, I am feeling stronger, not just physically but mentally happier too. I am starting to get the feeling of wanting to get my sewing machine back out, to use it, to be creative, to feel ‘normal’. I am enjoying being able to do the housework, so is Skye, she has helped mop the floors.

On the up side. We had a photoshoot done very recently and I would love to share one of my favourite photos:

A massive thank you to James Anderson who took these pictures, we had a great time.

That’s it for now, thanks for reading
IMG_9731 IMG_9749

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Living Two Lives

For me I’m living two lives. 12-06-2016

(I am truly sorry if I am repeating myself, this is where I am at)

Last Fri (09-06-16) I had bloods taken from me, my right arm is now allowed to be used for taking bloods only as it so far has shown no signs of having Lymphedema (fluid filling the whole arm as lymph nodes have been removed). After having my bloods taken to check my Cancer markers, Calcium levels, etc. I went and treated myself to a hair cut, to then be told my hair is thinning, due to the chemotherapy. Note: This is a rare side effect of this drug

Later that day I went for my 12 weekly CT scan. Thankfully I had already drunk 1ltr before getting to the unit, this brought my scan earlier, I just needed to drink another half a litre and then I could be scanned. Little did I know at this point that the A&E CT scanner had broken and wasn’t going to be fixed for a number of days. I was very lucky to be scanned as quickly as I was. It was bedlam, rhesus teams, RTA accidents, it was something out of casualty. All the staff were amazing and coped extraordinarily well considering the pressure they were under to get everyone through 2 CT scanners. Anyway, I was then canullated in the right arm (same place as earlier in the day). I was gowned and canullated and all ready to go. I layed down on the CT scanner bed head first, I was hooked up to a machine which pumped this contrast into me, the bed slid through this huge polo. I was injected with this contrast…. in all honesty it makes you feel warm and tingly all over and makes you feel like you’ve wet yourself. I then had to do this again as they wanted to scan my head. more of this contrast pumped into me.

All the while this was happening, I was missing the school celebrations of our Queens 90th birthday party. I really didn’t want to leave them, watching them play with their friends and having fun. I absolutely hate it when my two lives clash!
My hospital life interfering with my home life, it not only impacts my time with the children, they don’t like me leaving them to go to hospital. It has been our lives for nearly 3 years now.

I am Tired, I get tired quite quickly now. I’m not sure what makes me so shattered. The emotional side of everything or the concoction of the hundreds of tablets I take a week. I sure need a nap in the middle of the day, I feel like an old granny 🙂

The Children are great, they let me sleep in later at the weekend, I seem to spring to life around 3pm. which is absolutely ridiculous.

Tomorrow (13-06-16) is results day, results from my bloods and results from the CT scan. I know the results wouldn’t have been ‘written up’ but they will be on my file to be seen. I’m really hoping my pericardial effusion is ok (my heart problem) no fluid around my heart. That the nodules in my hillier (right and left) tumours (the branches that go to the lungs) have stopped growing, the nodules in my lungs are still that. my bones are still strong. Even though I have ground cavities into my teeth in which I now need fillings on Tuesday, the first fillings ever! I am now very prone to bones breaking. I have an injection every 4 weeks to strengthen my bones, as I now have no hormones rattling around inside of me anymore. It is the same treatment that ladies have that have osteoporosis.

The good thing is that I am not short of breath, which is a good sign that my heart hasn’t filled with fluid again.

This part is the horrid part. The Waiting. The What Next…… Am I responding? Do I carry on with the Chemo? so many questions and so many cant be answered.

I am getting used to this waiting game and it is my new ‘normal’ my life revolves around my gorgeous trio and the hospital. I am trying to get to see my friends more, when I can and when I have the energy.
We are eternally grateful for our meals we have a few days a week and our amazing helpers, without those id struggle even more.

Chow for now xx

 

 

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Just a Quick Update

Just a Quick Update (25-04-2016)

Hi all,

Today I had a midday appointment, not realising I would be waiting nearly 3 hours to see my Oncologist. She must have had an emergency earlier on in her clinic. The waiting for your 3 digit code to be called is emotionally tough, to pass the first hour I sat and partially got through a puzzle which someone had previously started. As I say that passed the first hour….. then chatted to a few people…
Dr A. my Oncologist is very happy that I am responding to the Chemotherapy which I am currently on.
Comparing my last two CT scans, the latest one shows that my first Cycle of Chemotherapy I am responding to. My markers have dropped by two to 30.

I informed her that I have recently been suffering from shortness of breath so I need to go back in a couple of days to have another Echocardiogram to check all is well with m heart. In the recent CT scan it showed I had a happy heart.

My bloods can now be taken from my right arm 🙂 As I have now gone past a two year period and I have been lucky enough not to have had lymphedema, she is happy for me to take the risk and have bloods taken from my right arm as the veins in my left arm have ‘had enough’.
The start days of my chemo will be changed from a Friday to Monday, as when my bloods are due to be taken, I am close to being neutrapeinic, by having blood taken on the day I finish a  two week session of chemo doesn’t give my body time to recover to give a true reading to see if I am well enough for my next lot of chemo.

The children are really happy of my good news, especially Vince as he is that much older and understands more than Skye and Blake…

That’s it for now…. I am aiming to defy science

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The Legalities

IMG_2154

Wow, there it is. My Will is now a legal document as has the Guardianship for my children became a legal document this morning (13-04-2016) I can’t thank Paul and Becca enough for offering to love, care and nurture my children into adulthood and beyond. That is truly a selfless and a massive thing to offer. I would like to also thank those of you who have contemplated about finding a way to do what Paul and Becca are. I am sure there have been lots of conversations amongst you who want to but cant for your own family commitments, I thank those of you, with the deepest of thanks.

I would like to thank Lynn, Lynn you are a very special lady to me. We have been through some tough times together, we have had many laughs, lots of tears along the way. This morning was an emotional one. Sorting out my Will with you sat by myside, sorting this out is something that I have been putting off for sometime now. With thanks to you, I did it. I have not wanted to face the reality that this piece of paper will be need to be used at some point, possibly soon.

Today we shared some more tears, tears of all of this “rubbish”, tears of all of this being unfair. Tears of fear whilst I lay in a black bag in a morgue, cold and on my own. I know I will be dead then but its still a horrid thought I have.

The past couple of weeks I’ve felt overwhelmed by the sheer volume of thoughts I’ve got in my head. Every single element in my life needs sorting. I am feeling exhausted and yet I forget I am on a good dose of chemotherapy everyday – twice a day in fact, 2 weeks on the drugs and one week off for my body to recover, then back on it again. The drugs seem to be zapping my energy levels a lot. I have recently stopped taking one of my night time painkillers which made me very drowsy, even through to the next day. I am feeling much more alert and less “drugged”. I have started to notice my mouth is changing again from being a healthy and normal mouth to one that is starting to loose the skin in the inside and starting to grow ulcers. I have noticed a tingly feeling in my feet but not noticed anything yet in my hands. All of my insides are starting to change (I’ll spare you the gory stuff).

I had the optitions today for a contact lens check up. He remembered me from last year and commented on how much more hair I have, he asked how my health is now doing. So I explained the progression.
Much to his delight, considering the drugs I’m on, my eyes are coping remarkably well. They are tolerating the contact lenses very well, although the further along the course of treatment of Chemo I am on the worse my eyes get and feel like my eyes are full of sand this then stops me from wearing the lenses and to give my eyes a rest for a day or so.

I suppose the next thing for me to organise is my funeral….

Thank you all so much for all your love and support x

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More Bloods, More Scans, More Results.

More Bloods, More Scans, More Results.

So, I have finished my first Chemotherapy (by tablet form) 2 week session. One week off from chemo, then two weeks on etc.

Yesterday (04-04-2016) myself and a great friend Carole, went to the Hospital to get the blood results which I had, had done a few days previously. The day I had my bloods taken (which took 3 attempts, my veins have had enough) was the morning in which I had only just finished taking my last chemo tablets. Not realising/remembering the results from the blood test may show that I am neutropenic (not enough white blood cells to fight infection). I was borderline neautropenic, so I was asked to have my bloods retaken in a few days time to give my body time to get the levels back to normal.

Within that blood test the levels of my CA15:3 (cancer markers) have dropped further. Initially the started back in October 2015 at 127, now they are at 32.1. The markers are continuing to drop, this indicates that the treatment I am continuing to have for my bones are working!!!!

A couple of days before seeing my oncologists senior registrar, I had a CT scan performed, this needed for me to have a cannula in my arm (this took 2 attempts in the same arm, as the day before) so in my hand it went.

I was scanned from my eye brows, down past my pelvis. The results of these hadn’t been ‘written up’ so I’ll get those at my next appointment.

 

 

 

 

 

 

 

 

 

 

 

 

 

above is my heart now              above is my heart a month ago
with no fluid present                  with 1.7ltrs of fluid

 

When I get the results of the Ct scan I will let you know.

 

Thank you so much for all your support, a big thanks to my parents whom have had my trio the past few days to give me a rest.
Another massive thank you to a dear friend of mine who suddenly and very sadly lost her daddy, he fell asleep and didn’t wake up. Thank you Carole of giving us all the freedom of your daddy’s mobility scooter that happily fits in my boot. Rest Well Peter, you were an amazing dad, a great English teacher, a brilliant taxi driver to hockey matches. I have many fond memories of you Peter, We will have fun and freedom with your scooter.

Thank you for reading my blog x

#HHH

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