Living alone with cancer

Hi Dragonfly. I replied to BigA with my advice for what it was worth. In that reply I forewarned that one of the most painful and draining part of the cancer journey was the dawning realisation that ' friends'  had gone. Between my first major surgery and second major surgery a total of 6 weeks a long-standing friend of 30 years literally vanished a fully qualified counsellor to boot!! 

I hope you do understand your own self worth no good me telling you that you are brave what are the other lines oh yes courageous strong etc etc please do me a favour. Suffice to say yes you are still very much here and truly deserve to be. Well done. 

Take care Dragonfly

Flukka66

Hihi 

This is my 2nd time round with a cancer diagnosis. In 2019 I was diagnosed with womb cancer, had major surgery and given the all clear a few years later. 

Now I've been diagnosed this year with the rare T-LGL leukaemia which is incurable but slow growing. 

I've lived on my own for over 20 years so I was on my own except for a few weeks after my surgery in 2019 when I stayed with friends. 

This time I'm on my own. My symptoms are mainly incessant mouth ulcers but I'm hoping the GCSF I'm taking will keep these at bay. Besides trying to overcome the usual bureaucratic systems, the hardest thing when you're on your own is when you're tired and fed up, there isn't anyone to make you a drink - you either lie there parched or you get up and make it yourself! 

I believe I've had TLGLL for a while but it takes so long to get a diagnosis but now I have a very friendly and helpful CNS and team at the Royal Marsden that is responsive. 

But I find that treatment is very experimental and usually guided by how I feel. 

However, I know that they're busy people and although the literature says they're there for "your emotional, physical, financial and social concerns", so far I've only contacted them for medical needs. Has anyone else developed a relationship with their CNS in for other things? Does anyone chat to their CNS regularly outside the appointments?

Anyhoo, since this is round 2 I'm not as dazed as I was the first time. But a lot of things get left undone, and I try to do the sport I want to do but have long naps afterwards.

I retired 2 years ago and it seems I now have the job of looking after my health! 

I'm going to look into the buddy scheme if anyone will put up with me :-)

Liz 

Pay particular attention to the side effects of drugs that may be prescribed, I was put on cyclosporine and did not pay attention to its side effects, consequently I have suffered with skin cancer and have had two cut out, now have another on the way. I stopped the cyclosporine after the skin cancer diagnosis, much to the disdain of my Haemotologist specialist. I am now five years into my journey with T-LGL. 

Hi Ghengis

Thanks very much for your advice. You're so right. They are talking about methotrexate but I already get mouth ulcers and diarrhea so I will be discussing the method of application as well - as a friend who has rheumatoid arthritis had terrible ulcers and diarrhea using the tablets - but is ok long term on injections. 

However, I did agree to try it next year after travel but that's not a given, my blood markers are good at the moment so I will definitely think long and hard about it. 

I didn't realise that cyclosporine would make your skin more prone to cancers but I thought it made you more hairy, so I will be sure to read up carefully. 

I'm hoping my specialist is more understanding, she already agreed to delay the trial and I will make it clear that if the tablets gives me bad side effects I will stop taking it. 

One of the medicines that was particularly effective for me was Doxycycline but after a few doses my mouth swells and I lose my sense of taste. It was effective, but I'm not happy about those side effects!

It's tough on the mind right? As cancer survivors we are faced with being guinea pigs for drugs with sides effects that run to two pages. I definitely need to make sure my questions are concrete and I need to get rid of the "white coat syndrome"

Liz

Hi Grumpy. 

I know this is a very serious topic but sometimes you do happen to laugh after seeing t he humorous side of things people probably inadvertently write.

lying there parched!!!! I had to make another trip to A/E  yesterday arrived at 1pm  and waited 7 hours , when everyone came and went I approached the desk have I been missed? No I would need to wait til the 9pm shift change the Dr on that shift was the only one who knew anything about my cancer. I actually phoned a very supportive MacMillan nurse because my levels were so high I was hallucinating whilst waiting.

By the time I got home at 1.30 am I went to bed fully dressed not something I normally do but forgive me exhaustion had really grabbed hold. I woke up probably dehydrated from the day before and overheating in bed as you say lying there parched!!! And yes the only option is to find strength and get up .

Reading other people's comments I do believe now that people diagnosed with cancer morph overnight into am I allowed to say an advanced badass  with a honorary doctorate in decoding upside down scan  results whilst in a state of dehydration or something similar . 

Kind regards and take care.

Flukka66

 Hi Flukka66

For some reason I am very often parched and run out of drink. If only I could ring a bell and call my butler! I've taken to bringing a large bottle to the bedside so I can decant when required. 

I recall my ex was always very obliging. Whenever one of us went to the kitchen we would always offer the other a drink (for me non alcoholic as I am teetotal). And he would get me a drink whenever I asked too, without any complaint or comment about "laziness" or "owing him" - he was just such a kind guy. Unlike my two (!) husbands before him who I served hand and foot. It genuinely touched me, I just wasn't used to that kindness. I miss him as he passed away too young of heart failure in 2017, we remained friends after we split up and he left a wife and young family behind.  

Sorry to hear you were at A&E, I hope they were able to resolve your problems. 

And if I inject humour (hoho) it is most definitely maybe on purpose, I am quite dark humoured which I hope doesn't offend, my thinking is, if I can't laugh at myself who else can?

And glad you can decode scans which are inadvertently upside down!

Thanks for commenting and laughing with me.

Liz

Hi Liz . You are most welcome . Please keep laughing and injecting humour it's good that you have incredibly beautiful memories of a kind and generous man .  He would I'm pretty sure want you to continue with your dark humour so that folk like me can  have a good belly laugh now and then. 

Yes I've my follow up with the surgeon on Tuesday after my second surgery in two months and medication problems to boot so anything humorous throw it this way.

Hope you are doing okay on your journey .

Kind regards 

Nicola

David59 said:

Hi I was diagnosed with cancer on the 6th of August 

Hi David59,

Welcome to the Online Community!

Thanks for sharing your news, and I'm sorry to hear about your diagnosis. If you would feel comfortable doing so, perhaps you'd like to share what type of cancer diagnosis you have received? We can then direct you to one of our support forums tailored toward supporting members who have a similar diagnosis.

If you'd rather look for the support group that best suits your needs yourself, you can view our full list of cancer type forums by visiting the link below:

• Cancer type forums

Aside from accessing support via the Online Community, don’t forget our Macmillan Support Line teams are also here for you. They’re available from 8am to 8pm, 7 days a week, on freephone 0808 808 00 00. You can also reach them by email or via live webchat.

I was referred for suspected skin  cancer im just  waiting  for  my  hospital appointment I already  had a appointment with my gp who examined me  and  did two weeks referral 

Hi Eunice77 

It's Steph here from the Community team, I've just been chatting with you here.

We're all here to support you whilst you go through further tests.

Our Support Line is also here if you want to talk, or have questions. Our Support Line teams are available 7 days a week, 8am-8pm on freephone 0808 808 00 00, email or live webchat.