Waiting for results with insomnia and finances

Have I got breast cancer? Appointments and waiting for test results
1

Hi, I’m currently waiting for biopsy results after finding a lump/thickening, 2 clusters of calcifications on mammogram and distortions on ultrasound. I know the waiting is tough, I can’t make it hurry up so trying to remain “it is what it is” about it all.

I’m currently struggling with sleep, both getting to sleep but waking early. This morning I’ve been awake since 4am just thinking about the what ifs. I’m also massively thinking about finances if I do need time off work. I changed jobs this year so sick pay is 1 month full, 2 months half plus SSP. My partner earns too but if I get to the point of only SSP, or none after the amount of weeks, then we literally won’t have enough to pay the bills. At the moment this (aside of the wanting to know what it is) is consuming my thoughts. I’ve been looking at stuff like council tax reduction but our council don’t list illness as a reason to reduce, my partner earns too much for UC I think. To top it off, I have some other health conditions (heart and epilepsy plus historic mental health crisis) which means no insurer would cover me for critical illness or life insurance. I’ve got a ‘light touch’ cover which is for broken bones etc, and payouts for stays in hospital, but that for accidents only in the first 2 years, sickness in hospital is only after 2 years of cover in place. Guess what? I took it out this year so it wouldn’t cover me for time in hospital if I needed it for this.

I’m someone who needs to plan and I’m wondering if anyone can make suggestions, both for the insomnia but also where I could find out about financial support if needed. We have 2 children still at school too so I’m really feeling to worry about providing for them.

1 Like
2

So very sorry for your situation. One of the hardest things about the stage you are at now is the inability to plan anything , the lack of control over your own life and when you have a diagnosis and a plan - something to work towards then psychologically it tends to get better . I’m lucky in that I’m on blood pressure medication that I have to take at night because it makes me sleepy so I didn’t have the insomnia but many people have sought help from their GP . Abdominal breathing mindfulness Somatic Yoga or progressive body relaxation can be helpful if you prefer the holistic route .

Have they given you an indication that it is cancer ? Many of us are told even before results if they think it’s cancer but not everyone. .MacMillan are the people to contact for financial advice but wouldn’t be able to give you more than general advice until you have a confirmed diagnosis. Also cancer and cancer treatments come under the Disabilities Act - you would be entitled to reasonable adjustments and sick time related to cancer treatments may be able to be treated differently from other sickness depending on the length of the treatment plan ( can be classed as a long term condition ) . You don’t say what your job is - some people have been able to work through part of their treatment . One lady I know who works at a GP surgery face to face with patients was able to work from home doing admin whilst she underwent chemo. Some weeks she was able to work for 30 hours other weeks not at all.
In case you weren’t aware if you’re diagnosed with cancer then you are entitled to free prescriptions for 5 years - your surgery should give you a card . My friend who was diagnosed after me told me - I had to ask my surgery for one.
With best wishes going forward xx

3

Thanks for your reply @JoanneN. The consultant said “There is something there, the breast tissue doesn’t look how we’d expect it too. I’m completely on the fence, we don’t know what it is so have to wait for the biopsy results”. I asked if she was worried and she said “no, but that’s because I don’t know what it is…if it is cancer then it’s early and it’s treatable”. I was due to be travelling for work on the date for my results but she was very clear I needed to cancel that travel. Something about her manner made me feel it has a lot of indicators for being cancer and that she wouldn’t be surprised if it was.

I work from home for a government body so it’s not physically demanding, and they are very supportive in terms of leave. I know there’d be no expectation for me to attend in person meetings or courses which is helpful. The business policy is up to a total of 4 weeks for disability reasons but any absences must be between longer periods of attendance. There can be exceptional circumstances to extend this.

I’m already in receipt of free prescriptions because I take medication for epilepsy but thank you for sharing that.

You’re right, it is a very uncertain time. I’m not good at surprises, even nice ones!, so waiting is feeling quite difficult.

My gut feeling is that it is cancer, reading this site there is mention of calcifications with breast changes being highly indicative of malignancy (awful word!). The mammographer showed me the calcifications, they were 2 groups in a cluster and they weren’t smooth edges. I had never heard of ‘distortions’ before so have read about those (scientific sites like NICE) and they are called architectural distortions and found on an ultrasound are ‘highly indicative’ of malignancy.

I know reading/Googling isn’t helpful, but I have always been interested in science, my son has ongoing medical issues and I have always done lots of reading about that - I also love medical documentaries!

My parents went on holiday yesterday and they don’t know I’ve had all this going on, dreading telling them when they’re back. My mum lost her mum to non-Hodgkin’s lymphoma when she was 8 and my dad finds emotive situations difficult to respond to. My dad also lost 2 sisters to cancer, one was breast cancer, in the last 4 years. I feel like I’m going to have to manage their reactions/emotions. I really don’t want them treating me like I’m fragile, I want to retain normality as much as possible.

Have everything crossed it’s nothing to worry about, but I have a feeling of acceptance that is what is coming, more than panic or overwhelming fear. It’s like I’m thinking “ok, so now how do we sort this out?”

Very much hoping that my ramblings don’t become reality, but I’ve always been ‘plan for the worst and hope for the best’.

Thanks again for your reply x

3 Likes
4

Many of us this think this period of uncertainty waiting for results and for a plan and not having any co trolley over your life is the worst part of all of it and rather than trying to think ahead you have to get through it a day at a time and if you can find tiny moments of joy .

You sound as though you know what you’re doing with Google - you need to keep a bit of detachment in your head when you’re doing it - it’s hard as often a rabbit hole opens up in your head and Google can help you to disappear down it if you aren’t careful . As you and your son both have medical issues you’re probably used being able to find reputable sites and input the right words that won’t bring up the worst possible scenario and resist the temptation to delve into all of that. Once I had my diagnosis I did Google as I had choices to make . My Breast Cancer Nurse also sent me a huge pile of information and leaflets from Breast Cancer Now and other organisations and some of those were very helpful and informative.

I was dreading telling my Dad who was 91 at the time especially as we had only lost my Mum a few months previously but he took it relatively well.
You do develop a sort of public face - one of my friends who also had BC said that she had to rescue everyone she told . When Dad started asking me questions I remember telling him that it wasn’t going to kill me it was just going to be a bloody nuisance - the fact that he could see I was angry and able to be a bit flippant seemed to help him and gave him a clue as how to treat me . There were a few " think positive " type comments which made me see red ( practically bit one of my friends head off ) but on the whole people treated me much the same as always. You seem like a very capable person so I think it’s unlikely that people will treat you as though you’re fragile .
The trick is to have someone to spill over to that you don’t have to put on a game face with.
There’s always someone here if you need to vent and you could speak to the Nurses on the helpline as well . Xx

2 Likes
5

I completely agree with you , re the ’ think positive’ thing, I got a lot of that when I had primary breast cancer 20
Years ago. I now have secondary with lymph nodes involvement, I was told this 3 weeks ago. Awaiting results of MRI scan of liver as there was a. Suspicious spot on the CT scan. Big inoperable lump on the muscle across my shoulder, on the edge of my armpit. Appointment with oncologist on two weeks time. I agree re unable to make plans, I feel very out of control of my life, it seems to have suddenly swerved off down a side road that I don’t know. Am trying to think of it as a journey, a mystery tour. ( A magical one would be nice… Ooer, showing my age there). The specialist nurse that I was introduced to at my initial results outpatient results appointment was brilliant and very knowledgeable. It might be worth asking the specialist nurse team if there are any local cancer support charities? In my area, Devon , there is one which has volunteer councellors that you can get free sessions with, to get support with worries and issues and emotions such as you described so eloquently and which are so understandable under the circumstances. It’s a bummer isn’t it, but what can you do … X

1 Like
6

Except take care of yourself. Btw I have been trying CBD oil in the evening to see if it helps with anxiety. Might be worth a try even if it just takes edge off it. I know it doesn’t necessarily work for everybody and I have no idea if it would interact with your epilepsy medication but you are probably an expert about that sort of thing. It’s totally legal , I bought mine at our local whole food shop x

1 Like
7

Just a quick reply as I’ve created a newer post, but it is cancer. Invasive Ductal Carcinoma. Feeling positive but naturally worried. Thank you all for your replies.

1 Like