I've not written for a while but feel that i just want to share some of Colin and my journey over the last few months to see if i can at least help anyone else out there in the same position as us and i know it will make mee feel better to speak about it. In September we were told that the immunotherapy treatment wasn't working so stopped. This was after Chemotherapy then Radiotherapy and a spread from the throat to the lungs. Obviously we were really disappointed and all that could be offered would be palliative chemo. Our wonderful consultant at Dundee suggested that Colin take three months out and go and do what he was able to do and then we would look at where we were after that.
We went home and booked a trip of a lifetime to Canada, we went to Goodwood revival and Duxford Airshow and in the lead up to Christmas had a busy time with friends then a wonderful family Christmas. We even got away with friends for New year and started 2022 with a bang...
We saw the consultant at the end of January again and there was nothing to offer still but at least we made the right decision not to have the chemo as we wouldn't have been able to do all those wonderful things together had he been having chemo. it was suggested that Colin could have some steroids to help with his energy levels and maybe give his appetite a boost so he has been taking them and we went on a long weekend to Rome the other week too so we have been busy. The steroids made such a difference and it was great to see him eat a bit better and enjoy the sights without being Knackered all the time.
We have enjoyed walks, nice meals (well i have enjoyed the nice meals and Colin has tried his best to eat despite having no appetite). We have had some lovely movie nights at home, gone to the cinema, we went to the Scotland V England Rugby on Saturday which made his day and to see him in his kilt with tears in his eyes when Scotland won was absolutely amazing.
We are lucky that colin had an insurance policy which he cashed in and we are able to do these things and we do appreciate that so much, i work in the family business so am able to take the time off to do these things too and we have adopted a - just go for it policy and are determined to do all we can while we can.
The dark cloud looms over us though and sometimes i cant seem to make them go away and when i think that the only outcome is that i am going to lose the man I love in the not to distant future i have to give myself a shake and try to be brave for him.
His dream is to go back to Africa, we have been lucky enough to go a few times already and it is our place so we are hoping that with the aid of the steroids we will get there soon.
Now i know that reading this it seems that i am just bragging about what we have done but that wasn't the aim. I just want to express that if you are lucky enough to be able to tick off bucket list things then do it. It doesn't have to be trips it can be simple things too that bring home how lucky we are to have had the time we have had together and although it isn't as long as we wanted we have at least had the chance to sort things out and make plans. I don't want to pay off the mortgage and sit and watch my soul mate fade away. I want him to get the good of the money and time we have.
No being tied to hospital appointments and doctors or scans has given us a wee bit of freedom which we will make the most of.
Colin is one of the unlucky, untreatable ones and we don't know what time we have left but we are going to make the most of it until we cant. We have always had busy lives doing loads well before Covid and now we are going for it as Covid is the least of our worries.
Please if you are in the same situation, watch your favourite movies, go to your favourite places and be with your favourite people and don't hold back your feelings, I've tried that and ended up in a mess. If you need help ask for it and be kind to yourself. As a carer there is no manual as every one of us is living a different chapter but we all have a wee something in common that brings us together here to vent.
Take care all and try to be strong
Liz x
Hi Liz,
This is such a lovely uplifting post, despite Colin’s heartbreaking diagnosis. Unfortunately we were in complete lockdown when my loved one started to become unwell & how I wish we could have enjoyed his last few months.
Keep up your trips & I hope you get to Africa soon.
x
Thank you Hubert, im sorry to hear that timing wasnt on your side. This pandemic hasnt helped with trying to do bucket list things.
I do realise how lucky we are right now.
Liz x
Louise
Thnak you for that. We are in a terrible situation and trying to make the most of things. How are you ?
Liz x
Hi, Louise here I start my treatment on Monday at the Western General Hospital, 1 week cemo/ radiotherapy staying in hospital, 3.5 weeks radiotherapy then last week in hospital again cemo/radiotherapy.
I have Anal cancer, never heard of it in my life, it’s not common so they say but there are plenty of woman on this web page that have it. It’s very painful, and the treatment due to were it is is meant to be horrendous.
Needs must so need to get on with it. I’m 62 years old with 3 wonderful grown sons and 5 grandchildren all under the age of 4.
My middle son Peter is getting married in June in the Balmoral Hotel Edinburgh I’m hoping I’m on the mend by then.
Louise xxx
Louise
Good luck with the treatment. I know from my partners treatment although not the same. ( It seems that no two cancer patients have the same treatment) even for the same cancer. It was a relief to get started and once you are in that whirlwind you have a new focus. We too are grandparents and it is so lovely.
You have a wedding to look forward to and that will keep you focused on fighting this.
I wish you well on your journey and there are always lots of people on here for support.
Take Care
Liz x
Hi Liz
I found your feed really useful and uplifting. We found out on Friday that after 3 courses of chemo his final cycles can no longer continue due to his blood levels. We are heartbroken as there is no more treatment available. We have been told he probably has time left in months. He is now very unwell, tired and weak and we probably won't get to do the holiday trips we had wanted.
However every day now is precious. We will enjoy our time together being close and enjoying the simple pleasures. Family is a priority and I will absorb every little breath he has. I'm so happy you have managed to have your travel etc and wish you every blessing and happiness for your time ahead.
Sx
This is similar to my wife’s she was diagnosed HPV P16+ throat cancer all the Drs were so positive and we just found out it’s spread to bones and lungs. She starts immunotherapy next week once every 28 days for 3 cycles then will be rescanned. The Immnuo is only 15-20% likely to help but got to try.
she’s tired all the time in pain all the time I took her over to Aviemore for a break but she was sick the whole time. We have been advised to stay in the UK but a good day for us is going to Starbucks for a coffee.
sending my love to you and your husband
I’m sorry to hear that your wife is so unwell. It is a shame that you can’t enjoy the things you used to.
We found out last week my dad has lung, liver and brain cancer. He is deteriorating quickly, sadly. It has all been such a shock to the family but I agree now, a coffee and cake, fish and chips in the park or a trip to the garden centre is a good day for us too. It is the small things now that make such a big difference.
keep at it, it’s so hard… I know x
So sorry to hear about your Dad it’s so horrible how life can be so cruel .
You did give me an idea though and I think trip to the garden centre will be on the cards in a week or so depending how next weeks appointments go.
so glad we have people we can talk go on hear it helps so much as sometimes chatting to my wife worries her that she’s not got long x stay strong x
Whatever cancer throws your way, we’re right there with you.
We’re here to provide physical, financial and emotional support.
© Macmillan Cancer Support 2024 © Macmillan Cancer Support, registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man (604). Also operating in Northern Ireland. A company limited by guarantee, registered in England and Wales company number 2400969. Isle of Man company number 4694F. Registered office: 3rd Floor, Bronze Building, The Forge, 105 Sumner Street, London, SE1 9HZ. VAT no: 668265007