You’re not alone. It sucks big time to be diagnosed with a brain tumour of any type or grade. Getting your head around a diagnosis, treatment pathway and prognosis is not easy. You need to seek help in any area you’re struggling, and accept offers of help when given.
I’ve found my GP to be an incredible source of knowledge and support. My GP is my first port of call. I know it’s highly dependent on where you live but their breadth of knowledge is their greatest weapon.
My GP was the person who picked up that something wasn’t right. They have also done the following:
- Reviewed all correspondence from the hospital
- Reviewed and maintained any appropriate medication including emergency medication via electronic prescriptions
- Provided urgent access to CT scans and my one X-Ray
- Diagnosed correctly that I was suffering from pneumonia and influenza simultaneously
- Approved and provided all fit-to-work assessments (sick notes)
- Performed home visits when I was too ill to leave the house
- Provided signposting and access to North Staffordshire Wellbeing
- Supported every scan, referral and test result with follow up, sometimes by telephone in the evening
Use your GP; they don’t profess to know everything but they do know how to access someone who might.
Clinical Nurse Specialist
If you’re already seeing a consultant (or about to see one) then you’ll be provided with a Clinical Nurse Specialist. They provide a communication line to neuro multidisciplinary team (MDT) meetings and can communicate information back to you. They’re available for urgent advice and help. It’s likely they’ll attend any local support groups.
Brain Tumour Support and Local Support Group
The Brain Tumour Support website has useful information and is a great organisation to be in touch with. Here you’ll find details of local support workers and local groups. If you attend the North Staffordshire Group then I may see you there. I can’t make all the meetings but I do try. There are sometimes themed talks, chance to talk to other patients and other carers. It will also get you onto the mailing list to keep you informed of special events and conferences which may be interesting. I’ll be honest; the group meetings don’t have much structure so there isn’t the opportunity to go round the table (as a newbie) and give a thirty second intro. It’s not easy to introduce yourself without the tag line of what tumour you’ve got, and early on in the process I was filled with rage when a guest speaker spoke to me like I was a five year old. It wasn’t their intention, they probably didn’t mean it, but lacked the perspective that people with brain tumours are screaming internally all the time, “Yes, but YOU don’t have a brain tumour!”
I recently attended a wellbeing day in Shrewsbury which was brilliantly organised and full of useful information. My local support worker is very supportive and responds to emails quickly. The group meetings are a chance to talk to other patients and you can also get information from other organisations such as Macmillan.
All meetings can be attended by the patient or anyone else in your life affected by your diagnosis and are actively encouraged to join in where possible. After all, the impact on those around you should never be underestimated and they need just as much support.
The Brain Tumour Charity website is full of useful and high quality information. If you’ve had a diagnosis then there’s almost certainly some specific information for you.
Macmillan isn’t just for cancer.
The terms “benign” and “malignant” are a bit outdated. All tumours grow but some grow very slowly and can be arrested. Somehow Macmillan are inextricably linked to cancer. You’ve definitely heard of them.
But maybe you don’t have cancer so who do you speak to?
My advice would be to check out the websites above and speak to your Clinical Nurse Specialist or Brain Tumour Support worker who will signpost you to the right place. You can get all sorts of advice from financial to counselling and everything in between. I attend the Macmillan events in Shrewsbury when possible. If you’re in the West Midlands area you might find this information about Living Well sessions useful.
Who else might be able to help?
You might be referred to lots of different services which may seem daunting. Here’s a quick overview of everyone I’ve spoken with (apart from those already mentioned above) and how they’ve helped.
My hearing in my left ear was severely damaged during the brain biopsy from nerve damage. This was almost inevitable but still came as a surprise to me in the days following the biopsy. As someone who loves to listen to music this was especially hard to deal with. I had a hearing test to establish what my hearing loss profile was (frequency, volume) and was recommended a hearing aid. Based on my hearing test, the audiologist performed a few more tests and produced a personalised hearing aid for me. She warned me that as it was an “NHS hearing aid it wasn’t the latest and greatest” but I reckon it’s pretty good. It was free of charge, I get free battery replacements for life and has helped me recognise when people are speaking to me even if I can’t always make out what they’re saying. Crucially, it allows natural background sound into my ear, so I don’t feel like it’s blocked up and helps relieve some quite profound tinnitus.
It took around six months after my biopsy to be finally issued with the hearing aid.
A big long word, and a consultant with an even longer title. This department is concerned with cognitive ability assessment. It took an initial consultation of one hour, followed by two sessions, each lasting two hours, which tested my cognitive ability. They’re nothing to be scared of and can reveal if any damage has been done in a particular area. For me, it revealed I sometimes struggle with a lot of information presented verbally and I sometimes struggle with complex mental arithmetic but there was no residual cognitive impairment.
The positive result of doing these tests means I now know my limitations and I can adapt how I work as a result. You might find it useful to know your own limitations as better-informed employers might ask you if there are any reasonable adjustments you need making as you return to work.
Be warned, it is a clinical service so it’s focused on assessing you from what, at first appearance, can seem quite cold. It isn’t. The staff I encountered were lovely, supportive and reassuring, but they’re trying to assess you objectively to ultimately help you.
North Staffordshire Wellbeing Service
You can self-refer to this service if you’re in the North Staffordshire area. After I’d spoken with neuropsychology it was clear that the support I really needed was an emotional and wellbeing therapy but it wasn’t clear exactly who I should be speaking with. After an initial hour-long consultation I was offered a referral to three different services, of which Cancer Psychology seems to be the most appropriate.
I’m still awaiting my first appointment (August 2019) with this service. It was recommended since living long term with a brain tumour is, in many ways, very similar to living with cancer. I’ve been accepted as a patient and I’ll let you know how I get on.
Not all of my mobility issues are caused by the tumour. I’ve lost strength and condition over the last eighteen months and I’m trying to regain my fitness. Steroids, painkillers, excessive appetite and fatigue have all contributed to my current condition and I may be able to help myself feel better. I actually did around thirty minutes of walking almost every day I had radiotherapy. This was exhausting but I really felt the benefit. If you can see a community physiotherapist then take the chance; they can be a great support with recommended strengthening exercises and provide advice on appropriate fitness exercise.
Speech and language therapist
My speech was ok, but the pain in my cheek and jaw, followed by numbness, meant I really struggled to eat. There’s a post on the site about seeing this particular person but essentially she watched me eat and drink. She could then tell me what was happening from a mechanical point of view and then gave me some helpful advice on how to improve my eating technique.
Lots of generous people have shared their stories online. I’ve read quite a few and tried not to copy their styles. They’re all different types of tumours but a lot of the experiences are similar. It’s generous of them to share their stories, some in far more detail than I could ever achieve.
My blog is based on personal experiences and doesn’t contain a huge amount of helpful information. Rather, it’s meant to be chatty and tries to give an insight into life with a tumour. There is a timeline and each post is tagged and categorised if you want to read something with a particular theme. Perhaps I secretly want to be a newspaper columnist.
These are all useful and interesting.
Do you know an awesome resource that should be shared?
I’d love to know if you have a high quality resource that you think should be shared. Leave a comment or email me at firstname.lastname@example.org – I’ll take a look and if it looks good I’ll repost the information here.
In the meantime you might like to read this patient’s story from the BMJ.